Have a question? Ask it. We’ll do our best. And if we don’t know – we’ll point you in the right direction. Post your questions and the Thinking Moms will pick one or two to answer each week (dependent upon status of the full moon, yeast flares and midnight howlings).
I would avoid tech solutions (pharma, vitamins, etc.). Some people have vouched for simplicity, blended organic greens.
I once had intense GI tract disease following a pollution episode, and found that I could still eat without any problem, raw shredded cabbage, which creates friendly microbes. Eventually, I healed, over several years. The hormonal system reconstructs. Environmental review and abatement of stressors is essential also.
Hi there, I was wondering if anyone out there had any resources on healing “leaky gut” in children. My daughter is now 3 years old but was born 6 weeks prematurely by C-section and has suffered with severe eczema directly following her DTap at 6 months. That was the first and only vaccine she has received. We have been to highly ranked dermatologists and allergists for 2 years now, and they have yet to determine the root cause and only prescribe topical steroid creams which are not effective. We have tried probiotics, vitamins and supplements, and anti-histamines to no avail and I have to watch my daughter itch herself until she bleeds on a daily basis. My daughter also has multiple serious food allergies and sensitivities. She has a very limited diet already and we have tried the Gluten free/Dairy Free diet for a month without success. After doing much research, I think it may be leaky gut, but have not been successful in finding a doctor who will help her. I would be so grateful if anyone on here had similar experiences or could steer me in the right direction! Thanks so much in advance! I am so glad that I stumbled upon this group and keep up the amazing work!
Unfortunately, you’re not going to find too many doctors who can help you with leaky gut, though your chances are probably significantly better with a naturopath. The good news is that there is a lot you can do on your own. There are a number of books that can be very helpful, the first being “Gut and Psychology Syndrome,” by Dr. Natasha Campbell-McBride. Also good would be “Body Ecology,” by Donna Gates, and “Breaking the Vicious Cycle” by Elaine Gotschall, and “Enzymes for Autism and Other Neurological Conditions.” There are a few main problems: 1) digestion is incomplete, allowing large molecules into the bloodstream that cause allergic-type reactions and cause damage to brain cells — digestive enzymes can be a big help; 2) gut flora is off, find out if you can which things are a problem. OAT test (Great Plains Laboratory) or the like can be helpful here. Sometimes you can learn a lot by process of elimination. If child reacts to yeast killers, chances are good it’s an issue. 3) Need to replenish gut bacteria, good probiotics are very helpful with that. That should get you started! When you find something that interests your further, chances are good there is a Facebook group established to discuss it. Join the conversation! Parent networking is the best!
Thanks so much for such a thorough response! I really appreciate your time and will go get those books for sure! Quick question though- what exactly is an OAT test? And when you say yeast killers, would you mind giving some examples? I have lots to learn!
OAT is organic acids test. Checks to see what markers are in the stool for different kinds of gut bugs. Google the tests, there are two others (can’t remember them offhand) that some people claim are more useful for their children. It depends on which part of the gut is most compromised in your child. There’s a good list of yeast killers on this page: http://www.enzymestuff.com/conditionbacteria.htm. Be careful. Go low and slow! Die-off can be very uncomfortable.
I don’t have any personal experience with low histamine diets, but I know there are a lot of folks who do. Search Facebook for groups on low histamine diet or mast cell disorders.
I should also add, my daughter is very sensitive to high histamine foods (beans, avocados, tomatoes, etc), so we have been trying to figure out a nutrient dense diet with low histamine foods. Any chance you have any experience with that too? Thanks again!!
Thanks!
Why the warning?
It wasn’t a warning. It was a reassurance about the comment “trolls invading.” There’s only so far we allow them. If they are nasty, they’re gone.
I am researching prenatal ultrasound and vaccines, now for almost 2 years. I have notoriety, having brought the concept of pesticides=polio to the modern era. http://www.harvoa.org
Main Causations for the epidemics of a wide variety of infant diseases:
Vaccines seem obvious
Ultrasound seems obvious.
I find causation is either or both, in the main.
I understand the methods and degrees of scientific repression. I see the game. Causation is a ‘mystery’ and never pragmatically determined.
Your forums have real information from real people.
Can people volunteer their experiences on these two causation suspects? Before the trolls invade?
Symptoms observed?
Ultrasound histories?
Vaccine histories?
Don’t worry, Jim. We have comment approval. If people come to disagree, that’s fine, but outright insults, etc. get deleted immediately.
Hi. My book is published!
Two years of intense research into ultrasound disease causation; I have compiled an unprecedented Bibliography of 50 Human Studies! Empirical, dose/response studies.
It can be said with strong support that ultrasound is the primary initiator of vulnerabilities, or the direct cause, leading to childhood diseases.
Detailed article:
http://harvoa.org/chs/pr
Can this topic be discussed or brought into focus on TMR?
We’ve done some discussion on ultrasound as part of the etiology of autism, but have not delved deeply into it. If you’d like to send us a blog on the subject, we’ll take a look. You can send it to [email protected].
Hi there!
I have a story like so many of yours as the path of my life was abruptly changed when I had my first child, now 15 months old. First it was colic, then GERD, then she stopped eating at 4 months of age, along with severe food/chemical sensitivities, and then the self-injurious behavioral anomalies began to surface. Thanks to mom’s like you, I saw the writing on the wall and I slammed on the brakes and did a 180. I’m happy to report that she’s doing much better now, and I’ve found some fantastic local holistic medical resources who ‘get it’. And like you, I feel compelled to shout my experiences from the mountaintops in the hopes that just ONE other child might be saved.
Early on, I started a FB group with nearly 1000 members now and I’ve also begun blogging @ http://www.healourlittleones.com. At this juncture of my journey, I struggle most with the loneliness. I’m a very social person and my friendships and family relationships have all been compromised and/or affected in some way by this profound experience. I’m truly grateful that my husband and my mom are so supportive and implicitly trust my judgements. My heart breaks when I think about the mom’s who face the challenges I have (or worse), without any support.
I really feel the need for an in-person, local representation of this effort, and I would like to help. Perhaps we can add some functionality to this site which will allow individuals to find other mom’s in their area, and/or allow mom’s like me who are willing to organize and host TMR gatherings to reach other members. I’m an accomplished and very experienced software developer, and I would be happy to help in any way I can.
Thanks for everything you’ve done and please keep up the great work!
Hi Tracy! At the moment that is beyond our technical capabilities (we’re pretty much mom volunteers), but it IS a great idea and something we should consider. I might have to get some techie friends to help us out…
Sorry, I should have been more clear. I am a techie! Nearly all of my software development experience is with websites, and I even dabble in website design (the aesthetics). I’ve done predominantly Microsoft technologies as of late, but I’ve also worked with a number of agnostic platforms.
I can help both with this effort and potentially with other facets of your site if needed. You can contact me directly if you would like references and a link to my professional blog.
Cheers! 🙂
You BET you’ll hear from us! Thanks, Tracy!
A recent post was removed about children, vaccines and cancer.. I’m interested in reading it, any way getting an opportunity?? Thk you
Hi, Wade! So glad you’re interested. Unfortunately, the site has had more traffic than the server can handle lately and we had to sideline that post till the site is stabilized. It will be back soon, though! Stay tuned . . .
I’m looking for some information about the flu shot. It seems to be less effective each year but all I hear is that everyone should get the shot. I never hear anyone discuss that we’re potentially reducing our resistance to the flu. Love to get more information on the subject.
You can start here, Mark: https://thinkingmomsrevolution.com/flu-shot-clinic/
There’s a great question in what you’re asking, and it’s occurring to others. Many of the people who have died of the flu this year are people who HAD flu shots. I think I’ve only heard of one who HADN’T. In addition, they are just beginning to study the effects of multiple year flu shots, and they found that people who had the flu shot two years in a row were NOT as “protected” as those who had had it ONCE. http://www.cidrap.umn.edu/news-perspective/2014/11/study-adds-more-data-effects-consecutive-year-flu-shots
Hi there, I was just wondering if anyone knew which vaccine insert if any listed autism or autism like symptoms as a possible adverse reaction. I cant seem to find the word autism listed but I’m sure they list it, perhaps with a different name. Cheers, Pam
In the official controlled studies, they don’t follow the outcomes anywhere near long enough to allow for autism diagnosis following vaccination, but in the section on adverse events in the post-approval period you will find things like this:
“Additional Adverse Reactions:
. . .
Adverse events reported during post-approval use of Tripedia vaccine include idiopathic thrombocytopenic purpura, SIDS, anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea. Events were included in this list because of the seriousness or frequency of reporting. Because these events are reported voluntarily from a population of uncertain size, it is not always possible to reliably estimate their frequencies or to establish a causal relationship to components of Tripedia vaccine.”
Tripedia DTaP vaccine insert: http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM101580.pdf
I have a question. How or what is the best way for me to confirm whether or not my daughter has SPD? My feeling is that she does, but since I’m not familiar or too educated on it I don’t know how to tell. She’s a picky eater, late talker, mover, climber, very curious….compared to some children she is definitely more into exploring and daring. To some she seems a little hyper. She’s also sensitive, and soft and extremely intelligent. She also can get overwhelmed at times when too much is going on. I know she’s not autistic, but I just cannot pin point what’s special about her. Or maybe its just me taking in what other people are saying about her? I’m a little lost, where do I even start?
Hi Christina! Frankly, if you see issues it may be far less important to get an outside diagnosis than it is to jump on the issues that you see. Partly, this is because most of the issues have common biological cores, especially with regard to gastrointestinal issues. I would dive into some books on the subject, starting with Kenneth Bock’s book Healing the New Childhood Epidemics and Enzymes for Autism and Other Neurological Conditions (the author’s sons had SPD), and The Late Talker. Then start where it makes sense to you to start. You might want to find a doctor to support your efforts, but much can be done without it. Anything you want to try or investigate, I promise you there is a Facebook group for it. Go, get as much information as you can. It will help. Hang out on our Facebook page and ask questions. ~ Professor
I have recently made the decision to not vaccinated my 2 month old son and when I told his pediatrician, she had told my husband that she can no longer see my son because it’s their policy. We are currently seeking another pediatrician but it’s seems that most have the same policy. I am hoping that you may have a referral for pediatricians that accept unvaccinated children. I am located in the San Francisco Bay Area in California.
Hi Deanna,
While I cannot give you advice on finding an MD who shares your (valid) concerns about immunization, I can tell you what I did for my sister when she lived in North Carolina. I asked around at all the local health food stores, yoga studios, and complementary health clinics for names of all-round well-recommended health professionals, and created a short-list for her with the names which had come up 3x or more.
From that list, there was an osteopathic doctor, a naturopathic doctor, and a traditional chinese medicine doctor, only one of which was covered by her insurance. She sees that osteopath every time she goes back, even though she’s moved overseas.
Another thing to be aware of is homeopathic nosodes, from which you can acquire immunity safely, inexpensively, and in a way your body is better-designed to both handle and benefit from (most disease vectors don’t land directly in the bloodstream). The vaccination proponents like to diatribe about epidemics as the only alternative… mistakenly.
In addition, there are homeopathic preparations such as VaccinAide (no, I don’t get kickbacks, it just works) which, if you end up with your child rounded up in a school vaccination program despite signed papers to the contrary, or cannot travel without injections, you can administer ASAP to help minimize the damage to your child.
FYI, I have autism, have worked in the complementary health field for 20 years, and spend my spare time collating data on successful autism recovery strategies and techniques. You can get excellent health care for your children, but it may not be through a western-trained allopathic MD because it takes them years to un-brainwash themselves, poor folks.
You’re asking good questions… don’t stop!
Blessings, Jackie
My question….
My son has sudden urinary incontinence and frequency issues. His urine was tested for bacteria and it was negative. We tried Ditropan and it didn’t help. An x-ray of bowels showed no constipation. A cystoscopy showed no damage in bladder or otherwise. My son is currently on Diflucan based on the possibility of a fungal infection and after 7 days has not shown much improvement. Prior to this my 11 year old son was completely potty trained with no accidents ever. A throat culture was positive for Group A strep. He was given a 7 day course of Zithromax. Still no improvement. Any suggestions on what else to test for? One physician suggested an anti anxiety med, do you think that is what is happening? He has obvious abdominal discomfort and this leaking is taking over his life. Has anyone had this, and how was it resolved?
Rani, it might be one of the reflexes; have you read https://thinkingmomsrevolution.com/autism-reflex-integration-and-the-brain-building-new-connections-with-mnri/?
If he does seem high-stress, the Holosync-type binaural frequencies can help him access meditative states while he listens to stories and music, and these states back down stress dramatically over time.
Finally, your boy’s gut is likely missing some of the healthy critters that are supposed to be there, after the waves of internal genocide from the antibiotics. If you don’t yet make or eat lacto-fermented pickles, look up what Dr. Joseph Mercola has to say about them and their effectiveness at re-seeding the gut with dramatically more and more diverse pro-biotics than you can get from any pill (especially if you make them the traditional way).
Best Wishes, Jackie
I absolutely love all the amazing, heartbreaking, bittersweet blogs and posts I have read over some time now and with my own research I am starting to see the truth about vaccinations. I am just curious about the schools that require you to have this and this vaccine and will not allow your child to attend if they are not vaccinated, and how do you overcome this? I know homeschooling is one option, but not necessarily a great option for me.. religious beliefs, maybe? I am no where near putting a child in school, but the information and advice will be very beneficial for when I am ready. I love spreading the word about vaccinations and how it can truly harm a precious human being! Thank you so much for touching my heart!
contact rita palma at mykid mychoice online
she’s great and knows this system
best luck
and remember it’s your child and s/he is not government property
Any chances of coming out with a paperback version of your amazing book — I’d love to give the book to many people, but the affordability of a paperback would help.
Thanks for your reply. It would be great to be able to form local groups of people that are subscribed to TMR. TMR has so many people subscribed but locally the numbers feel small. I would love to be able to meet others in my area that are on the same page!
Thanks!!!
Hi moms and dad.
I started listening to the audio version of your book 3 days ago and wow, you guys rock!
My step son (soon to be 15) was diagnosed with ADD about a year ago and put on “Medikinet” (ritalin family) a few months later. He also had about a years worth of neurofeedback treatment (with not so great results).
The latest development is a suspected Aspergers syndrome, not yet officially diagnosed. I am starting to believe that the original ADD diagnosis was incorrect.
Personally I have seen the most promising way in a change of diet for quite some time. Years ago I read all the available books about the “blood type diet” by Dr. D’Amato and it all made sense to me then, and still does.
Over the last couple days I also started reading everything I could about GFCF diets and their promising effect on all your kids.
My question:
Has anybody got knowledge or experience in combining the GFCF and blood type diets (for an 0-Type like my step-son this isn’t very hard at all), or knows about any kind of studies that have been made about the issue?
Has anybody ever looked into a relation between blood type and autism (I mean not as a cause, but as a kind of higher risk factor) ?
Thank you so much. You are all so very inspiring!
I don’t know anyone who is specifically doing that, Roman, but I do know that the O-type diet is similar to a diet that a lot of people have been doing called GAPS from Gut and Psychology Syndrome by Dr. Natasha Campbell McBride. It is essentially the same diet as The Specific Carbohydrate diet described by Elaine Gottschall in Breaking the Vicious Cycle. For many of them it has been wonderful. I’m not aware of any studies on the subject. Personally, the O-type diet doesn’t work at all for me. I think many people are what Dr. Mercola calls “protein types,” because they do well on high-protein diets, but I’m not convinced it’s correlated to blood type, since I’m O positive and any attempt at one of those diets has made me feel like a bus ran over me. Thanks for writing! ~ Professor
Thank you very much Professor for your reply.
I will look into GAPS and listen to all the interviews Dr. Mercola made with Dr. Campbell McBride.
I took Dr. Mercola’s diet type test yesterday. It tells me I am a “protein type” and I am an A-type, really struggling with digesting red meat.
My step-son is a very picky eater, calling all the foods he doesn’t know “disgusting”. And of course, we are horrible parents serving him food he doesn’t like. He thinks we are freaks, because we try to find the type of diet that would help him AND he would accept.
Kind regards from Switzerland.
Roman
Been there, done that with the picky eaters. *sigh* One thing that I keep hearing, but haven’t REALLY experienced yet is that with gut healing comes a lesser sensitivity to textures that renders a lot fewer foods “disgusting.” I look forward to the day. If you’re truly a protein type and you’re having trouble digesting meat (which tends to be crucial for protein types), you might want to add in a good digestive enzyme (at least temporarily) that contains protease. Protease aids in the digestion of proteins. In addition, you might be low in stomach acid, which can be helped by taking Betaine HCl. Good luck!
Hi Roman,
I have autism, and you’re on the right track. Diet is huge, and in turning myself into a human guinea pig for the sake of health gains (and following what works for others with my symptoms and diagnoses), I’ve tried just about everything popular.
The blood type diet was nowhere near as helpful as being all-whole-foods and mostly-vegetarian, which in turn was nowhere near as helpful as going GF-CF (still all whole foods, no flour or flour products), which in turn has been blatantly outshone by the results of the GAPS diet.
Its combination of 95% plant foods, really high quality proteins, and lacto-fermented vegetables has been dramatic, and I’m finding homeopathic gut nosodes are speeding the die-off of the nasty gut bugs, and the recovery of the healthy ones. Believe me, it’s nowhere near as expensive as being unhealthy, and if you start adding wild foods for hypernourishment, it gets better.
Cheers, Jackie
Oh, just saw the comments about him being a picky eater. Several things:
1) Could be his reflexes (e.g. fear paralysis) that haven’t resolved
2) Go on an organized wilderness adventure trip with other families, where they plan their meals carefully and there’s nothing else to eat. Keep a chart recording his symptoms, then let him eat whatever he wants, no limits, in the first two days he gets back… and record his symptoms. Show him the result.
3) Tell him he can eat with you for free. Or he can buy himself a microfridge etc. to put in a basement corner, and cook for himself. He’s 15, and if he’s motivated, he’ll figure out how to feed himself what he wants and discover it’s not worth it, one way or another (e.g. it’s really hard to keep up the brain and motivation to work, even cutting lawns, when your body is in full rebellion).
It’s not harsh.
I’ve autism, and was financially independent apart from food, shelter and clothes starting at 13, and completely independent by 18. That’s neither a challenge nor a boast… it’s just to let you know it’s possible.
Blessings, Jackie
Dear Jackie, thanks so much for your input. The problem is so far off MY shoulders, as one day after we had a fight, he refused coming home as long as I would be in the house.
He’s now at a boarding school not far away where 6 – 8 kids live in a house with adults on rotation and they have to cook for themselves. His diet is now completely out of my influence, but I am also no longer directly affected by his anger outbursts and him not doing his homework. Positive thing is, that school is specialized in treating kids with special needs and does outings, camps in the wild and stuff like that. They haven’t officially diagnosed him yet (they have a whole team of psychologists and psychiatrists there) but his main teacher has been pretty clear: he is pretty sure we are dealing with autism somewhere on the spectrum.
Of course, I am now the one being blamed by my wife for not being able to have her son with her; even tho it was the plan already for a while to get him exactly into that school.
RE your remark about costs of healthy food:
I changed my food related shopping habits a long time ago and even tho organic, healthy produce are more expensive than the chemically or genetically modified alternatives, it never would cross my mind not to buy the good stuff just because it costs a little more.
You are absolutely right: the costs of being unhealthy are much higher.
Thanks again for all your suggestions.
Roman
Question: I have a 12 yr old who has not received the chicken pox vaccine. I’m wondering if and when I should do it, I’m hoping you can share some pros and cons. I have already read the vaccine insert. Also, if he gets the vaccine, will my other children be exposed to chicken pox via him, i.e. will he “shed” the virus? My husband is also not sure if he ever had chicken pox as a child. Thank you.
Why don’t you go listen to drpalevsky.com this doctor talks about all the damage he did to children with vaccines you can read the interview it on dr mercola .com
It just takes one shot to cause autism or a future cancer etc
check out the webs sites vacthruth, vaxthruth, nvic the founders of these sites have vaccine injured children like me——those vaccines destroyed our lives
learn how to naturally prevent disease or you may join our hell
Hi, Angela!
I can see arguments for a lot of vaccines, but chicken pox just isn’t one of them. Complications of chicken pox are rare, while the prevalence of chicken pox vaccine seems to be responsible for a wave of shingles cases in children. Shingles used to be an illness reserved for the elderly and the severely immunocompromised. Most people got an immune boost from periodic exposure to chicken pox. When I was young I never heard of shingles, and didn’t know anyone who had it. Now, in my early 50s, I’ve already had it and I know many, many others who were considerably younger the first time they got it.
Yes, the chicken pox vaccine is a live-virus vaccine and it CAN shed to others; be careful around those with a compromised immune system if you choose to vaccinate. Your husband may have acquired immunity without actually having had the disease, but, if he hasn’t, he is likely to have the hardest time with it.
My biggest problems with the live-virus vaccines is the long-term effect they have on the immune system. Good luck with your decision! ~ Professor
A new family moved into the neighborhood with an Autistic daughter whose behavioral age is the same as my daughter’s actual age. As we navigate and walk this path with our new friends we are trying to gain wisdom on how to handle the delicacy of the differences and challenges. We would really appreciate advice, information and the like. We are brand new to learning but have purchased some books so we are gaining a better understanding of why she repeats, why exact time matters… Etc. Please help.
Dear Anne –
We posted your question on our TMR Facebook page and got a number of great, heartfelt responses. It was posted on November 8, and everything on that page is in chronological order, so just scroll through the page.
Thank you for your wonderful question.
~LuvBug
I meant to post the website for the facebook page just in case:
https://www.facebook.com/thinkingmomsrevolution
I’ve heard fresh olive oil chelates arsenic. You might see how you can get 1 T in your kiddo per day. Maybe try this? It’s actually pretty tasty. I’ll use a lime instead sometimes and add coconut milk to it… http://thebarefootcook.com/recipes/lemon-liver-flush/
Mary Coyle is awesome… if you are using her, she’ll get things rolling for your child. Then when you are finished with her protocol, your child should be better able to handle CEASE or Heilkunst homeopathy. I’ve heard great things about Angelica…
TACA is a great place to get started!
Also go to Julie Matthews Nourishing Hope website and read it! Fabulous info on there about healing diets for your child.
There are tons of great FB groups to join… start typing in keywords and see what looks like a good fit for you.
Remember this is a marathon, not a sprint. Take care of yourself, too. Big hugs!
Hi everyone! My son, who turned two on June 10, was diagnosed with PDD-NOS on June 25. His most prominent weaknesses were eye contact (which was great with family, ok with other adults), not responding to his name, and lack of receptive communication skills. He literally understood nothing, could not follow simple commands, etc. Since his diagnosis (almost 4 months ago), he has learned about 40 words, which are mostly animals in picture books. He has developed an obsession with letters and numbers also. He has learned the whole alphabet and counts to 20. He recognizes each individual letter in words, but not reading yet. He has also learned a few shapes and is pointing a lot more than he used to to request things, but does not use words to communicate or gestures other than pointing (waving, shaking head for yes/no). He is showing great ability to learn, but his condition is rapidly worsening. At the time of his diagnosis, he had NO stims of any kind. Today, he flaps his hands and verbally stims. He will recite the alphabet or count over and over again, even when he isn’t looking at letters or numbers. This triggers some hyperactivity and intense focus that can make it difficult to redirect him. He hums, squeals, grunts throughout the day, something he never used to do. He also has tactile sensory issues, doesn’t care for sticky/gooey things, but is getting better with OT. He also seems under-sensitive or may have numbness in his extremities. He shakes/clenches his muscles when excited, his body locks up for a few seconds. He has recently started rubbing and smacking his lips/cheeks/chin area. He does it frequently and drools a lot, which makes me question numbness. The only medical test we have had done so far is a hair analysis. His aluminum and lead levels are moderately elevated, but his arsenic levels are through the roof (reference level being 0.08, his level being 0.46, almost 6x higher than is considered average). We have seen a local DAN, who started him on probiotics and diflucan for yeast. My son didn’t respond to the yeast treatment, which I thought was odd, because he does exhibit symptoms of yeast overgrowth – hyperactivity, silliness, inappropriate/out of place laughter/crying, seems bipolar, constantly constipated, gassy, distended abdomen. I am very interested in starting frequent, low-dose chelation to address his heavy metal toxicity. Can anyone suggest a doctor relatively close to me? I am in Northwest Pennsylvania, so NY, NJ, OH, PA area? I had an appointment with Dr. Kenneth Bock, but I could not come up with the money for the consultation fee, so I cancelled it. Many have suggested Mary Coyle in NY, so I have an appointment with her on October 23. A few other names that have come up are Angelica Lemke, Pierre Fontaine and Amy Yasko. I am also wanting to use homeopathy and wonder if anyone has experience, good or bad, with any treatment or doctors I’ve mentioned. Sorry for the lengthy comment. I just wanted to include the basics about my son in case anyone has dealt with the obsession with letters and numbers or the high arsenic levels. Another very odd thing that I can’t figure out – His iodine levels are about 5x what is considered average. I know low iodine can signal thyroid issues and people are prescribed iodine supplements to treat hypothyroidism, but I can’t find anything about extremely high iodine or if it could mean anything. I guess I am looking for basic suggestions and definitely doctor recommendations!
My beautiful and precious 16 month old grand-daughter is about to have her evaluation.
She has most of the classic autism symptoms: little eye contact, doesn’t respond to calling her name, no speech, no pointing or reaching, etc. But she is an innocent, loving little angel! I am desperate to help her while she is young!
Can anyone recommend a good doctor in Phoenix, Arizona? I am so convinced that biomedical is the way to go. If you have heard really positive things about someone or have first hand knowledge, please share!
Thinking Moms Revolution, thank you so much for this wonderful website. You are the shred of hope I’m holding on to right now! Way to buck the system, girls. I’m with you 100%!!!
we can put this on the FB page for you – none of us are from that area. Check FB a little later and maybe some of our readers can help.
there is definitely hope – some of our kids are already recovered and some are so so so close.
Look at gluten free/casein free / soy free diet first. Read Healing the New Chilrhood Epidemics: Autism, ADHD, Allergies and Asthma by Kenneth Bock.
SPD is not an a true diagnosis. Although it exists, the DSM IV & V do not recognize it as such. It also depends upon your insurance carrier & specific plan. Some plans will only pay for rehabilitative care not habilitative care. Typically if there are underling SPD deficits chances are there are alsootor deficits and/or dyspraxia (motor planning issues). Your therapists need to use 700 codes & not any codes that are in the 300’s as those codes are developmental ( meaning your child will eventually catch up). Check with your plan & ask for a copy of it so you ( they) will know how to code it
We are looking for advice and/or guidance on how to deal with insurance companies. Our son’s speech and occupational therapy requests continue to be denied with a “not medically necessary” explanation. Does anyone have a good resource on what is medically necessary for a 5 year old. He has sensory processing disorder. Thank you
Question. Has any family used Infared Sauna Treatment and if so can you please tell me the benefits you saw? We are considering trying this but I really would love to hear responses from parents who HAVE tried it. Also, what should one look for while doing the treatment?
Thanks so much for helping!
I just heard of this for the first time on Friday evening. The parent who mentioned it seemed to think it had done good things.
Hi Joyce,
I’ve used infrared saunas, but much prefer gardening in hot weather, sweat lodges, and wood-fired saunas, in that order. This is why:
– Most infrared saunas are made with some components that are plastic, resin, or otherwise off-gasing, and that leaves me toxic and hung-over (I have autism and therefore have impaired detox, and the airways are the fastest pathway into the bloodstream).
– Infrared saunas take a while to heat up. By the time I’ve built up a full sweat, my time limit is up. This isn’t useful when I’m in there to release fat soluble toxins through the sweat glands.
– gardening can be fun, and you can build play therapy into it for kids, but it’s work, and it can be hard to get a child started on it unless you begin really young… though it’s a brilliant way to get kids to eat more vegetables, right off the plant, sensory sensitivities or no (as long as it’s their choice, when and how and how much).
– Sweat lodges are often very hot, and while you sweat a ton and feel brilliant afterwards, and while they’re great for bringing everyone else into that deep energy-awareness which autistics are really good at but which the rest of the population has to work hard to reach, if you have high inflammation (which is most autistics), they are brutally uncomfortable.
– Wood-fired saunas are easy to build, easy to maintain, and easy to moderate the temperature in. When I work with kids with high inflammation like mine, I set us up with a bunch of wooden puzzles and games, keep the fire quite low (just on the edge of sweating), and we take bucket breaks outside to slosh water on ourselves (and often each other, but it depends on the child). When we’re in there for a few hours or an afternoon, all they notice is how hungry they are, how much fun they had, and how well they sleep that night. After a sauna like that is a really good time for an organic bone-broth soup chock-full of organic vegetables, with a side of lacto-fermented pickles, and picky kids are so relaxed, sensory sensitivities are a lot less of an issue.
i am a student at heald college and I was wondering if I can do an interview with one of the moms for my paper for my english class so if anyone would like to have an interview let me know
thank you
megan green
HI everyone,
I am been reading TMR for a while now, and cannot believe there are so many other people who think like me…how refreshing! I have an 11 year old son with a dx of Apergers/HFA/highly academically gifted and have been working hard with him since he was brought home from the hospital with severe reflux and colic in 2001. Our struggle continues today mainly with him just not fitting in with his peers and being ostracized. He ALMOST fits in but makes so many social mistakes and gets very frustrated and sometimes aggressive as a result when he does which ostracizes him further. The aggression over the years has definitely improved (but still present when he get very frustrated) but has always been what ostracizes him (and us as parents) the most. I have felt so alone in this journey and the more I learn and intervene with my son, the less I feel I can relate to those around me so often feel so lonely. We have three other NT children, but I often feel like I can no longer relate to their friend’s parents either (except on a superficial level) because of the things we have learned about diet, vaccines, etc. We have burned our extended families out in a desperate attempt to help our son and they don’t believe in anything alternative so those are impossible relationships these days. We are just so different now in our thinking (don’t vaccinate, don’t give antibiotics, use homeopathy for almost everything, eat organically mostly) and really need to find some other families to relate to. We are in Chapel Hill, NC which is a highly educated and liberal area but very homogenous when it comes to healthcare since there are SO many doctors trained similarly. Does anyone know a support group for families that are more like the TMR that I could get involved with and not feel so isolated? I am an extreme extrovert and this isolation over the years has left me clinically depressed for years and I am at breaking point.
Thank you for any help you can provide.
Natalie,
I’m sorry it’s taken so long for anyone to respond. We’re not disciplined about this questions page, unfortunately. We tend to forget it’s here. (We’ve been better about our Facebook page lately, if that helps.) We don’t know of support groups in Chapel Hill, NC, but we can put your question on the Facebook page and see who is in the area that might want to meet up with you. I know a number of people in NC and I am SURE you can find some like-minded souls. In addition, you and some others could start up a Facebook group where you can get together “virtually” even if you can’t do it in real life. (That’s actually how we started TMR. 🙂 ) In addition, you might want to consider attending the Autism One conference in Chicago in May, or the National Autism Association’s conference in November. http://nationalautismassociation.org/about-naa/naas-national-autism-conference/ You will find a lot of like-minded people there. Good luck!
Hi Natalie,
I just found this website, and am so sorry you’ve felt so isolated. I highly encourage you to check out the local home-schooler association (if there is one), the local health food stores and food buying clubs for message boards (put up a “Looking for friends who…” posting), the local yoga studios (especially if there are any that do family yoga programs), and any wilderness skills clubs/businesses/associations in the area. You’d be surprised at how many people are living your kind of alternative lifestyle under the veneer of “Don’t look too hard, I fit in here”.
I have autism, and have worked really hard to find the social “edges” where it’s not only ok to be as I am, but where people really enjoy my detail-awareness and encyclopedic brain. You can find these places too, and what it will mean is that your kids won’t ever have to be as lonely as you and I have been.
Blessings, Jackie
Hi
Just curious has anyone found/considered a link between autism and colic symptoms suffered as a baby?
Also whether vaccinations/antibiotics/food intolerances of the mother in pregnancy have any link?
Would appreciate your personal experiences and views on this.
Colic is an early indicator of gut dysbiosis, one of the five kinds of health problems that cause autistic symptoms. And any health issues in the mother during pregnancy, including a lack of sufficient exercise (causing neurological challenges such as an ongoing fear-paralysis reflex), can affect the baby.
However, I’d encourage you not to dwell on that. No child tumbles into autistic challenges from a single choice or accident. Asking what causes autism is like asking a camel which straw broke its back. Instead, focus on what your child’s symptoms are telling you about what’s needed, to heal.
Every single one of these five root causes of autistic challenges is treatable. And even though the brain develops differently when under high stress during key developmental stages, there are adaptive advantages to this differential development (or neurodiversity, as the self-help lingo now frames it). We autistics can’t always recover full health or function, but you’d better believe that we can recover enough to live fulfilling lives!
Blessings, Jackie
Thank you! Going to reach out to Dr. Buckley today.
Tell her Harry’s mom in Pensacola says “Hi”…we love her & her staff…she has helped us tremendously!…you are in good hands…:-)
Dr. Rossignol has an office in Melbourn, Fl and Dr. Julie Buckley has an office in Ponte Vedre, Fl. She is closest to you…
I just finished reading TMR and am in love with all of you 🙂 Anyway, I am located near Jacksonville, Florida and am looking for recommendations on a DAN! doctor and homeopathy experts in the area. My 9 year old was diagnosed with Aspergers, ADHD and Tourette’s years ago but we’ve never done any bio-medical interventions at all. I now have a 13 month old baby girl who is starting to display some areas of concern. IT’S TIME we address the root causes instead of treating the symptoms. Thanks in advance for any guidance.
My son was just diagnosed with a heavy chemical load on his little 6 yr old body. I believe it’s from the Lysol they spray in the classroom at school. I have gotten some information on the dangers of Lysol and aerosol disinfectants online, but was wondering if you have any further information. (Studies, facts, etc) I would like to provide it to the school.
Thanks so much!
Kay
Just finished your book ! Thank you enjoyed each end every story and with 2 DD s with ASD I have parts of my story in each of their stories !
I’m hoping you might have some idea or direction for me – it is regarding poop – go figure my 7 yr old still in diapers has not had a normal or at least formed poop for weeks something must be up in her gut : ( we do mag and probiotics she has limited diet high protein no milk no soy no dyes drinks only green tea . Wish I had doctor that I felt would take this as a issue vs it will pass . I’m in the Minneapolis metro area . Thank you so much for your strong voices !
Hi TMRs 🙂
We live in MA and i am hoping to get more info on vac exemptions. I have two boysone of them is on the spectrum, and vaccinating is no longer an option in my opinion. Anyone has some usefull info?
Thx
Hi Ally,
I hope you have already gotten exemptions for your sons. But, just in case you haven’t, the first and best place to go for exemption information by state is NVIC.org. We have a couple of members in MA, so I will check with them. ~ Professor
What do recovered people say about their time w autism? Their sensations, memories, emotions, struggles, etc.
Crystal, that’s a terrific question. I’m sorry it’s taken so long for anyone to answer it. Every child is different. The experience doesn’t seem to be the same, but there do seem to be some common themes. The thing that I’ve seen the most is that children remember details that their parents had no idea they were absorbing. They’ll say something like “Remember when we went to that pet store and that puppy was whining?” And the parent will figure out that that occurred when the child was seemingly oblivious to the world and completely non-verbal, but the child will remember a host of tiny details, including what everyone said and exactly how he or she felt at the time. Unfortunately, another common thing is talking about the pain they used to feel. 🙁 ~ Professor
Hi Crystal,
I’m just finding this site for the first time, or I would have replied earlier. I have autism, and used to have symptoms a lot worse than I do today.
Since I was 11 (and discovered from a month at a wilderness canoeing camp that my quality of life could be a LOT better than I’d previously experienced), I’ve turned my life into a science project, doing trial and error, hitting the medical journals in high school, leaving premed studies after 2nd year because they wouldn’t talk about anything but diagnosis and drugs, and then discovering environmental medicine and complementary health.
It wasn’t until I was 23 (over half my lifetime ago) that I realized I had autism. The symptoms were all bang-on, but the “treatments” in the medical journals at that time were a horror show left over from Nazi Germany. While things have improved, there are still places calling that stuff “treatment”, scarring up a perfectly good word.
Anyway, if you want a brief window into autism, think inflammation.
– Have you ever had a really bad fever, where your head felt like glass, every little jar sending heat and pain bouncing around? That’s inflammation and/or compaction of the skull plates.
– Have you ever had muscle aches after an unfamiliar activity, because your body wasn’t prepared to remove the waste products fast enough? That’s inflammation.
– Have you ever had brain fog, when you couldn’t find the right word no matter how hard you hunted for it? That’s toxins from immune dysfunction, gut dysbiosis, and impaired detoxification.
– Have you ever been so tired, or so doped with some medicine, that by the time you could think of an answer, the opportunity was well-and-truly past? That’s intoxication and hangover from the above sources of toxins.
– Have you ever had stomach pain so bad you could trace where the gut linings were throughout your digestive system? That’s gut dysbiosis and impaired detoxification.
– Have you ever cleared a public bathroom because your bowel movements were so explosive and had such a nauseating stench? And had people tease you about it afterwards like that much awfulness had no impact on you? That’s unresolved trauma and gut dysbiosis.
– Have you ever felt like your skull was five sizes too small for your head, as though someone’s cramped climbing shoes were clamped on your head instead of their feet? That’s unresolved trauma (stress gone mad), toxins, and often, compressed skull plates.
– Have you ever sneezed, wept, and itched your way through a pollen storm or a visit with a cat? That’s immune dysfunction.
– Have you ever tried to make a wart, fungal infection, or skin rash go away for over 20 years? That’s immune dysfunction.
– Have you ever been so traumatized that you’d get triggered by comments and looks that (amazingly) weren’t actually intended to harm? Yep, you guessed it, unresolved trauma.
Bringing together the EXPERIENCES of autism with the science that makes SENSE of these experiences has been my life’s work so far. If you’ve got specifics in mind, rather than just this general question, get in touch with me at thrivewithautism.ca.
Best Wishes, Jackie
Here is my question. What’s the scoop on the coconut oil? I’m hearing that is is amazing and can help with gut issues, so I got some for my 27 year old son who has had GI issues on and off since his MMR vaccine at 16months. I started him on 3 caps a day of the Source Naturals extra virgin coconut oil, then worked up to 5 caps a day. Within days he started to have some issues. He was irritable and started biting his hand, something that had dropped way off prior to the coconut oil. I’ve dropped him back to 4 caps a day and he seems better. So what I really want to know is what if any success you ‘ve had with coconut oil and negative reactions, are they commone and if so why?
THANKS in advance!
Hi Jan,
From what I’ve been able to read on the subject–coconut oil is a very powerful yeast killer. You have to start out very slow and increase gradually or the die off may be too fast. You may have to start with only 1 cap and stay at that dose for awhile. Stick with a dose he is comfortable with and go from there. For me personally, the coconut oil is helping my son’s seizures and motor tics. I’ve been going low and slow and haven’t had any negative reactions so far.
thank you so much!! I had spoken to the mom of a 33 year old and said her daughter’s diarrhea which she had most of her life went away on 3 coconut oil a day. Since my son is a moose (6′ 2″ and 308 pounds) I figured 4 a day would be a good place to start. I am putting him back to 3 a day (am, pm and bedtime) and I’ll see how he does.
thanks again. Can’t tell you how much I appreciate your 2 cents ; )
Merry Christmas Thinking Moms…I have a question. My son Harry has improved so much in 2012. Last February, we introduced GFCF, hyperbarics & supplements; we can no longer call this kid non-verbal and we are so thankful. We need to work on handwriting & appropriate language (for example answering/asking questions) in 2013. Any suggestions on how to improve these areas? We do OT & Speech but we have made little progress if any. Thank you, Dee H
Hi,
Dont know if this has been answered as yet.
ABA therapy worked wonders for my daughter. The wonderful best therapist we ever had with early intervention introduced ‘W’ easy questions, which come later on as another skill set, like ‘What’ and ‘Which’, easy to answer which require only pointing, and answering objectively (my daughter started with that) and then verbalizing slowly which your son already has. She went on to introduce patterns and sequences which she got very easily. She was really aggressive and very much anxious but ABA got her to focus and learn a lot
Try a few sessions and see if that works. All the best.
Thinking Moms. This petition needs a boost. Share it, link to it!
https://petitions.whitehouse.gov/petition/prohibit-mandatory-vaccination/yQxkgyd1
Thanks for the advice! My husband and I did tell my OB that we do not want our baby to have any shots. She said that’s fine, and at the hospital I’ll be delivering at, I’d have to sign a release for her to get any shots anyway. I already plan to keep our baby with us at all times anyway, unless an emergency arises. Also, we know our pediatrician will grudgingly allow us not to vaccinate. My husband can debate with the best of them, so I feel confident there. Thanks again for the info!
U may want to keep baby by u the whole time. I have strong suspicion our ds was given hepB at birth against our wishes.
To: PittmanOfLaMancha
I would only tell the OB that you don’t want your baby to receive the HepB and maybe the Vitamin K in the hospital. He/She does not have to know anything else.
Be vigilant in the hospital and make sure the nurses know that too and don’t end up giving your baby the shots anyway.
Look for a pediatrician, if you haven’t done that, and discuss your plan not to vaccinate in advance. Depending on where you live it may take some time to find a pediatrician who will agree with your plan.
Good luck and get all the sleep you can get now!
I am a thinking mom to be, in about 6 short weeks. I found this site through my friend Y, who has also given me other information that has proven instrumental in my husband and my decision not to vaccinate our baby. (Oh look, here’s a brand new baby with an itsy-bitsy body and an itsy-bitsy immune system. Let’s make her first day outside the womb just spiffy by giving her Hep B to fight!)
Our mutual friend A has a one-year-old who has not been vaccinated. In her birth plan, A was clear that her son was not to receive any shots without her consent. Is a birth plan and vigilance all I need in the hospital? Is our decision not to vaccinate our daughter something I need to discuss with my OB now? I would appreciate any information you could give me. Thanks!
you better talk with the ob to be sure and have all in writing watch out for the vac nazi nuses they can shoot your kid up without prermission or liability
make sure a family member is with the baby at all times
get legal protection such as a religious waiver. you can be busted on medical neglect for not vaccinating and there have been cases of children stolen out of the hospital by cps
websites:
nvic
vac thruth
fight cps
massoutrage
book : vacine epidemic
I wanted to know if anyone has tried HBOT and if any of you are in Miami, FL.
I would love to have a real asd mom to talk to locally. Perhaps you guys can setup like a support section where women who would like to meet others like them can put their email and list by city or something like that. It is so hard to find that here in Miami. Everyone is too busy to care about anyone else but if you are on this site, I think it is because you are a real warrior and we all need to support each other.
I’m not local, but we did 11 hours of HBOT when we visited our specialist this past September and we saw an improvement in my son’s stool from that short amount of time. When we are able to afford it, we plan to do a minimum of 40 hours. We don’t have a good option locally so we’ll have to rent a machine or buy one… but it was great for us. If you are interested in hearing more parent’s talk about HBOT, you can go to Dr. Neubrander’s site and watch video testimonials of parents talking about different therapies, how they worked, if they worked, and what side effects they might have seen. Side note: Dr. Neubrander is not our physician but he has greta videos online with parents being totally open about their experiences good, bad, or indifferent.
Yes Yes Yes…We have been lucky enough to rent one. We have done 1 hour every day as of October 1st. LOVE IT!. We were told 40 sessions was the “magic” number but we are going to keep going through December so we will ultimately do around 90 if we continue to do atleast 1 hour everyday. My son asks to get into it…he just loves it. We call it his “rocketship”. Next to the GF/CF diet, we have seen the most improvement thanks to Hbot. His language has really improved and he is asking questions (which he never did before). I get in it with him and I feel great as well. Honestly, I would invest in an Hbot instead of a swimming pool. If you want to email me any questions, my email is [email protected]. I don’t sell them or work for someone who does or anything. I really have been pleased with our experience and the results. God Bless…:-)
I just read Mama Mac’s “why I don’t” blog and at the end she mentions antibiotic injury. It is the first direct mention I’ve seen like it, autism and antibiotics. I would love to contact her to ask a few questions. My son is now seven, unvaccinated, but started showing autism symptoms after antibiotics at 15 months. I really want to hear her story regarding this, hopefully she can point me to info to help me research the link. What I have is limited, most vague or inaccurate. And, like all moms trying to kick autism’s ass, I am desperate for answers and truth. Could you help me? Or have her contact me?
Mama Mac here, happy to chat about anti-biotics although for a much more scientific conversation look at Martha Herbert’s stuff. She is really concerned about the autism/antibiotic possible link and also the accumulative damage of abx and vaccines together. You may also want to look at Tinus Smits Cease homeopathy if you haven’t already. Lots of parents having good responses from homeopathically clearing the vaccines their child regressed most closely to. Send me a private message on facebook and we can connect. Happy to.
A little off topic but I have a friend whose daughter Type 1 Diabetes (the autoimmune disorder) was triggered by antibiotics at age 4. Within 24 hours of starting that course of antibiotics, her daughter became abnormally thirsty and started to urinate a lot so she called the doctor to see if this was a normal reaction, the doctor had her come right in to test for diabetes and yes she had developed it. I haven’t looked into but apparently the doctor had heard of antibiotics triggering diabetes before. Interesting, altho her daughter had no autism symptoms before or since (age 9 now) but was like my son in that she was constantly sick with colds, flu, ear infections. Now has also been dx with Celiacs too which is often linked to Type 1. But I always had this feeling that they had similar immune issues as young children.
If you’re not doing the GAPS diet and incorporating lacto-fermented foods into his diet, that’s the fastest path short of a fecal transplant (which doesn’t always work for really bad gut dysbiosis), start now. It helps the gut ecosystem shift back to a climate that probiotic bacteria can actually live and reproduce in, and stops feeding the undesirable species.
Hi,
I just learned about this website and wanted to know if any of you moms have had experience working with Scott Smith at the Full Potential Wellness Center. I am currently seeing a different Bio-med doc and was thinking about making a switch. Can anyone help me with making a decision. Any information would be most helpful.
Thanks!
Stacey mom to Will 5yrs old with mild ASD
Everyone only has positive things to say about him. I hope this helps!
Heyyyy . . . so is there a glossary of terms for this site (or at another site that any of you know of)? I’m running into so many unknown acronyms and terms it’s getting a bit confusing keeping them straight, and knowing if I’m getting the correct answer from Google. NT? CDSA? RBC? CBC? MCV? Vaccine titers? PANDAS?
Say what??
Also, does anyone know of a list or site where we can look up GOOD doctors in our area? We were referred to a Dr. Timothy Culbert at Ridgeview Integrative Medicine in Chaska, MN (within 40 miles of me), and was just curious about whether there were other good docs around.
Thanks in advance,
Allie
A search for “NT” yielded: Northern Territory, No Thanks, New Technology, Nice Try, Nuchal Translucency, Nose Tackle . . . I could go on! LOL!! Obviously I want to throw out all but medical terms, but still. Any suggestions would be GREATLY appreciated!
We’re still waiting for paperwork to be processed before we can get in with Dr. C (son hasn’t been diagnosed yet, but I strongly suspect some form of high-functioning autism), just wondered if anybody knows someone in MN?
Thanks!
Thanks much!
Try this website: http://www.medilexicon.com/medicalabbreviations.php
NT=Neurotypical
RBC=Red blood cells.
WBC=White blood cells
CBC=Complete blood count
PANDAS=Paediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection
I just found out about this site and the comments I’ve read are very encouraging. I’m the Mother of a 19 yr. old daughter with Autism. Deonna just graduated from High School. Here in El Paso we have MHMR which has a 10 yr.waiting list of which we have been on for 5 yrs. There is just nothing available for adults with the disorder. There are indepent NPO but all are geared towards (children) and not adults. I’m still calling and searching for information to further our cause. There just has to be a program somewhere that she can get involved in so that she can be productive and contribute to society. Can’t stop won’t stop ! If anyone has any suggestions please let me know.
Specialisterne positive traits advert: http://www.youtube.com/watch?v=QmuxKMamuaI in Canada: http://www.thestar.com/news/world/2013/11/04/danish_firm_that_helps_those_with_autism_find_tech_jobs_is_setting_up_in_canada.html
Farm Respite for Adults: http://www.thenorthernecho.co.uk/news/10765213.Lodges_to_offer_respite_care_for_autistic_adults/
Best Practices Supported Living: http://www.nytimes.com/2013/10/10/garden/the-architecture-of-autism.html?_r=0
Bay Area Employment Rises for Autistics: http://www.mercurynews.com/news/ci_24198513/new-ventures-train-high-functioning-autistic-adults-high
Residential Living Course: http://houltoninstitute.com/programs/agi-residential-daily-living-support-course/
More Trusting: http://www.sciencedirect.com/science/article/pii/S0022096513000994
Work: http://abclocal.go.com/kgo/story?section=news%2Flocal%2Fsan_francisco&id=9111658
Autism Grunt Work: http://www.disabilityscoop.com/2013/04/09/business-workers-autism/17682/
Workplace Readiness Conference: http://www.calgaryherald.com/business/Conference+looks+creating+employment+people+with+Autism/8476672/story.html
Firm (Auticon, Elke Seng) Supports Autistics: http://www.news.com.au/business/companies/german-software-company-sap-recruits-autistic-staff/story-fnda1bsz-1226661672010
Competitive Advantage vs. Challenge: http://blogs.hbr.org/schrage/2013/05/autisms-competitive-advantage.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+harvardbusiness+%28HBR.org%29
High-Tech Work: http://www.cbc.ca/news/business/story/2013/05/22/business-autism-sap.html
Respite for Adults with Disabilities: http://www.heartfitrespite.com/
Children Film-makers: http://globalnews.ca/video/523083/children-with-autism-and-filmmaking
Jobs: http://www.cnn.com/2013/04/30/health/irpt-autism-in-the-workplace/index.html
Workplace Accommodation: http://www.autism.com/index.php/adults_accommodations2
Work: http://www.inc.com/margaret-heffernan/hire-autistic-people-heres-why.html
Entrepreneurial Training: http://autismcollege.com/blog/2013/01/10/together-we-can-create-the-future-we-want-to-see/?utm_medium=email&utm_campaign=Practical+Autism+News+You+Can+Use+from+Chantal+Sicile-Kira+January+2013&utm_content=Practical+Autism+News+You+Can+Use+from+Chantal+Sicile-Kira+January+2013+CID_541150e1662a6b4a8009c85d3bb66785&utm_source=Email%20campaign&utm_term=The%20Autism%20Entrepreneurs%20Center
Self-Employment Workbook: http://autismcollege.com/store/self-employment-workbook-a-beginners-guide-to-self-employment/?utm_medium=email&utm_campaign=Practical+Autism+News+You+Can+Use+from+Chantal+Sicile-Kira+January+2013&utm_content=Practical+Autism+News+You+Can+Use+from+Chantal+Sicile-Kira+January+2013+CID_541150e1662a6b4a8009c85d3bb66785&utm_source=Email%20campaign&utm_term=Self-Employment
Mentorship: http://www.thestar.com/news/gta/article/1289299–the-autism-project-york-university-students-with-asperger-s-thrive-in-mentorship-program
Guidelines to Accommodate Environmental Sensitivities: http://www.casle.ca/LinkClick.aspx?fileticket=zqVxOkSb5a0%3d&tabid=56
iPod Helps Autistics Keep Work: http://www.latimes.com/health/boostershots/la-heb-ipod-touch-autism-20120904,0,6057045.story
Jobs & Work: http://www.reuters.com/article/2012/08/27/us-job-programs-autistic-idUSBRE87Q0Z820120827 http://www.thestar.com/news/gta/article/1289419–the-autism-project-a-worker-with-autism-may-be-your-best-employee
Employment Training: http://www.jvstoronto.org/index.php?page=employment-for-people-with-asperger-syndrome
Benefits of autism article in Globe:
http://www.theglobeandmail.com/life/health/new-health/health-news/the-autistic-advantage-montreal-team-taps-researchers-potential/article2223348/
Autism & Work http://www.wired.com/techbiz/people/magazine/17-10/ff_smartlist_sonne#Replay http://www.nytimes.com/2012/12/02/magazine/the-autism-advantage.html?hp&_r=0
Living at home without work: http://drexel.edu/now/news-media/releases/archive/2013/September/Autism-Spectrum-Young-Adult-Transition-Studies/
End of Schooling Transition Support: http://foa.sagepub.com/content/27/1/42.full.pdf+html
84% of Autistic Adults Live With Parents: http://www.autismspeaks.org/sites/default/files/docs/2013_national_housing_survey.pdf
Calgary Training & Employment: http://www.newswire.ca/en/story/1266925/government-of-canada-supports-social-enterprise-initiative-in-calgary-that-will-benefit-canadians-with-autism-spectrum-disorder
Autistics Growing Good Food: http://www.indiegogo.com/projects/green-bridge-growers-an-urban-farm-with-a-difference http://foodtank.org/news/2013/12/food-as-a-bridge-to-jobs-and-hope-green-bridge-growers
Unemployment Rates: http://www.cbsnews.com/news/one-in-three-adults-with-autism-lack-professional-experience-worrying-experts/
Medical Internships Lead to Work: http://news.vcu.edu/article/VCU_Study_Job_Training_Improves_Employment_Chances_For_Youth
Able Advisor, Resource on Inclusion in the Workplace: http://www.AbleAdvisor.com/
Autistics’ Best Practices for Work: http://my-inner-voice.blogspot.ca/2013/12/must-read-new-improved-new-dandelion.html http://www.quora.com/Autism/Can-we-successfully-employ-long-term-highly-functional-and-asperger-young-adults-in-mainstream-corporations-How-can-we-supplement-the-HR-departments-of-any-organization-with-all-services-needed-to-achieve-this-goal
TV Ontario Documentary about ASD Adults & Work: http://tvo.org/video/201894/autism-grows
Parent-led Housing Creation: http://articles.chicagotribune.com/2013-01-23/health/ct-met-disabled-housing-0123-20130123_1_young-adults-autism-family-group
Stigma in the Workplace: http://blog.changeboard.com/2012/07/asperger-leaders-removing-the-stigma/
Autism Job Board: http://www.huffingtonpost.com/2014/06/02/autism-job-board_n_5418880.html
Hope those help…
Best Wishes, Jackie
I am desperate for help. My son Ryan is 6 years old. He is on the severe end of the spectrum – non-verbal, aggressive, self-injurious, almost constant meltdowns, rarely sleeps… We have been doing biomed, and have had him on a gf/cf/sf diet for 3 years, with no real improvements. Out of sheer desperation, we recently have put him on Risperdal, hoping it would decrease the aggression, self-injury and constant sleepless nights. There was initial improvement for about 2 months, but now, 4 months in, all of the behaviors are back. Even with a slight increase in dosage, these behaviors have not decreased.
I’m afraid to keep increasing the Risperdal. I want to try something different, but my husband is not open-minded about alternative therapies (like CEASE, NAET, etc…). We also have financial limitations, but not “enough” to qualify for scholarships. My greatest fear, though, is losing my son. It’s already been suggested that he may need to be institutionalized at a later time. I will NOT let that happen. Ryan is a triplet. One of his triplet sisters passed away at 6 months old, due to a congenital heart defect. I will NOT lose another child. But things have to change around here. He injures himself and me. I fear that he will injure his surviving triplet sister. This has to stop. Our family can’t continue like this.
Does anyone have any suggestions for diets, treatments, or anything else that I can look into? Please… we are desperate.
Thank-you,
Karen
Hi Karen,
First of all, my heart goes out to you. You have been through the wringer and so has your little guy. Who is your biomed doctor? Sad to say not all doctors etc or biomes programs are created equal.
What vitamins/supplements is your child on?
Has the person you are working with done a CDSA on stool, and done RBC w Trace Minerals and CBC and looked at MCV and vaccine titers etc?
What is he taking to support his liver? What is he taking to methylate? What is he taking to help support his body as a base mineral (form of magnesium?)?
Is he taking lecithin (nonGMO like Premier Research Labs)?
Is he on an anti yeast diet and has he been tested for candida? (a sensitive test not a run of the mill one…)
Depending on your propensity for reading, a reader friendly anti yeast diet is Breaking the Vicious Cycle by Elaine Gotschall. A more elegant, deep, and medically minded book would be Gut and Psychology Syndrome by Natasha Campbell McBride (neurosurgeon and nutritionist)
Another good couple of books about treating autism is
Healing Our Autistic Children by Dr. Julie Buckley
Healing Our New Childhood Epidemics by Dr. Kenneth Bock
I will put your family in my prayers. Feel free to ask further questions…
Best,
Lindsey
In addition to Lindsey’s comments, which I couldn’t agree with more, I’d recommend you look at a homeopath familiar with drainage remedies such as Unda or Reckeweg.
He wouldn’t be so aggressive if he weren’t experiencing a very high degree of inflammation, and these are the absolute fastest way I know to get my own level of inflammation and irritation down (I have autism, too).
If your husband is open to the science, I have a collection of highly regarded studies on the efficacy of homeopathy… I actually bumped into homeopathy in the medical literature first, having taken pre-meds and not realized the ugly history behind their “little sugar pills” joke.
Best Wishes, Jackie
ThriveWithAutism.ca
I don’t know where you live but the Dr. we are using here is Florida has helped us tremendously. Her name is Dr. Julie Buckley (http://www.juliebuckley.com/). When we started bio medical intervention with her, she suggested we start with GF/CF diet but, if we did not see improvement, try removing Soy, or other allergens one by one. She said while most kids will improve with GF/CF diet, not all will. Also, has your child had blood work done? That will get you tons of insight into what is going on with deficiencies, and allergies. We found out our son had high levels of lead in his body and needed vit. D. We have also introduced Naltrexone with great improvement. Dr. Buckley also suggested in her seminar (which is on youtube in 15 parts) that self-injurious behavior could be severe acid reflux. I will pray for you and your family…that you will find the right combination to heal your child. Dee
My son is about to turn 8. We went through the same thing. We have used a slew of medicines to calm him down as we do not have access to holistic opportunities. We contacted a well known public health services building. He has recieved both medical and therapy services from them. It’s still a struggle but we have gotten him more calm with Abilify and Zoloft at bedtime to calm his anxiety and aggression. He is trying Focalin in the mornings for school to help him focus. He is in a contained classroom at school also. This place were he recieves care also has their own inpatient facility. The on site doctor was able to give him a full diagnosis at the time we took him there. It was so helpful. It was only a week and he actually liked his time there. He has an in-home therapist twice a week. They even offer a program where a caregiver can live with you and help out. we have never done that one. There are alot of services out there but unfortunately you have to research it or hear about it. I am still amazed at how much I don’t know. I stumbled upon this website by accident too. I”m sorry about your loss of his sister. I hope you are able to find some resources soon. Feel free to email me and I’d be happy to help you research. [email protected]
Hi Thinking Moms,
Have you thought of widening your group to Moms of kids with other chronic illnesses:
ADD/ADHD, Type 1 diabetes or other autoimmune diseases, asthma, allergies, etc?
There is strength in numbers and your kids and theirs have a lot in common.
Apple
Hi Apple,
Although autism was the common factor which originally brought our group together, many of us also have children suffering from other autoimmune disorders. I would hope all would feel welcome at TMR. However, I do appreciate that we’ve been concentrating our efforts on the autism issue up until now. Perhaps this is something we should address, as we are all aware that the autoimmune illnesses you’ve mentioned are probably related to the environmental exposures which triggered our kid’s autism in the first place. We’ll get our heads together asap and see how we can create a more inclusive community.
Hi Moms,
My son Harry has just started taking Naltrexone. One ML before bedtime for one week then 2ML for one week up to 3ML daily BID. Anyone else used this? I am wondering what to expect as far as behavior. What I read online said you should see a change in behavior shortly after taking it but our Dr. has us taking it at bedtime. Thank you, Dee 🙂
Allie,
It sounds like you have several factors going on here. Just because a RAST comes back neg, it does not mean your child does not have intolerances. You can see that he has a reaction to corn even if he is not allergic to it. It sounds like he is very sensitive to chemicals as well.
I highly recommend you read the GAPS book as well as the book Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies by Dr. Kenneth Bock. I really do think they will get you on the path to deciphering your son’s intestinal health and development.
You said your physician gave you the brush off on getting your child tested. If he is 3, there should be some strong baselines you can look at… can you have decent back and forth conversations with him on subjects that are not high interest? Does he relate to you emotionally (positive and negative) or just knowledge based interactions? Does he use his own sentences all the time or does he script? (Like using phrases from a cartoon in the right context in other everyday situations…) Does he have OCD like tendencies or strong preferences to colors, toys, etc? Does he interact with other children appropriately? Or is he the little boy playing in the sand by himself when the other little boys are doing parallel play with their cars? These are by no means a comprehensive list of questions at all… and if you’ve met one person on the spectrum, you’ve met one person on the spectrum. However, if you find the answer to many of these questions is yes, then I would push forward and get him evaluated. My concerns for my kiddo were blown off, too.
Also, a lot of folks with food allergies have issues with motor skills and balance etc. Although, not all kiddos with allergies have these issues. If your child is the one who is falling a lot or is low on energy and does not “seem athletic,” you might consider getting him evaluated by an OT for his motor skills and balance.
Hi Lindsey,
Thank you so much for taking the time to answer my questions! It’s so helpful to have someone thinking alongside me, especially when I have very little idea what questions to ask and what to look for in my son.
You asked a few questions that took me a few days to digest: I needed to observe my guy for a while before I could answer.
You said (regarding baselines)
Q:… can you have decent back and forth conversations with him on subjects that are not high interest? A: Most of the time I think we can, but he’s a bit hard to understand sometimes, even for me, the momma. He doesn’t like to have long conversations, he’s just too darn busy.
Q:Does he relate to you emotionally (positive and negative) or just knowledge based interactions? A: Oh my, yes, he can be VERY emotional. Sometimes with no known (to me) triggers. If he seems to be feeling good, he’s affectionate and mellow. If he’s tired, hungry, not getting his way, or has had corn or gluten, he’s a nightmare. Tantrums, slamming his head on the floor, screaming, throwing himself on the floor. He responds okay to some sensory integration techniques, mostly just bear hugs when he’s wild: helps calm down the hyperventilation and mellows him out.
Q:Does he use his own sentences all the time or does he script? (Like using phrases from a cartoon in the right context in other everyday situations…) A: He does both. I notice that he scripts when he tries to talk on the phone (and mostly babbles, not much real intelligible talking when conversing with grandma or auntie), but if he wants something (food, drink, ANOTHER apple) he’s pretty clear and can ask me directly.
Q:Does he have OCD like tendencies or strong preferences to colors, toys, etc? A: Loves anything with wheels, mostly cars or trains. Lies on the floor to watch the wheels turn, or clears off shelves and table tops so he can look at the wheels turn.
Q:Does he interact with other children appropriately? Or is he the little boy playing in the sand by himself when the other little boys are doing parallel play with their cars? A: It’s hard to say. He plays okay with his siblings, of course they fight over toys occasionally, but I don’t see him with other kids much. I’m home with my littles, and being pregnant makes it hard to drag everybody to the park. He goes willingly to the nursery at church, loves to play with the toys, refuses to sit with other kids for story time, but is RIGHT THERE for snack time.
Stuff I’ve noticed lately: he has a hard time in big grocery stores, and big box stores like Target and WalMart. We get in there and he just has a melt down, but can’t tell me why and I can’t get him calmed down.
We’re scheduled for the allergist today, yesterday I got a book on celiac, and I’m going to talk to my MD about a referral to a peds GI doc. Of course at this point we’re still just trying to rule out ‘treatable’ conditions, but there is still this little nagging thing at the back of my brain, know what I mean? In the times when he’s clear of corn/gluten/colors/chemicals, he’s present and my sweet little boy. When he’s had any of the above, he turns almost demonic and I don’t know what to do.
It’s like I told my nurse: none of his symptoms ‘scream’ any one condition, at least not from what I’ve read. But what else do I read? Where else do I go and what do I look at? I KNOW something isn’t right, I just can’t tell what it is. When he doesn’t feel good, he switches off somehow, where my other two kids come to me for comfort. I don’t get it.
And I am really starting to HATE insurance companies.
Allie – Starting this with I’m a mom not a professional… however, this all sounds very familiar to me as a mom of a child who was thigh functioning enough to throw everyone for a loop but once we really paid attention to all the details that made up the whole picture, I knew he had autism. This was after getting diagnosed with SPD and Food Sensory Aversion.
Here are my two suggestions outside of the books I suggested you read which I suggest even more after hearing your answers…
1. Get him evaluated for SPD. It sounds like he gets overwhelmed with too much stimulation – ie. grocery store meltdowns. I remember my child screaming like a banshee at Whole Foods and getting dirty looks from people like I was a bad parent. My kid was in distress…
2. Do major research before getting him evaluated for an Autism Spectrum disorder. If you get the wrong doctor, they will just send you out the door with a diagnosis and suggestion to choose a therapy. Are you comfortable sharing what state you live in? And how far are you willing to drive to find someone who can really help your kiddo? I bet we could brainstorm with some other moms or I can ask our son’s specialist in Florida about doctors in your state or nearby states. But it sounds like he needs an evaluation and it sounds like that is what your gut says as well. The earlier you intervene and get blood work to understand biochemistry issues as well get getting OT started, the faster/better the chances for a strong recovery. He’s developing a lot of white matter and neuronal pathways right now. This is the age to really make an impact.
And I feel you on insurance companies. But keep reminding yourself your son is worth fighting for… and take care of you, too. Find an outlet… yoga, working out, a support group, an hour or two reading at the library or coffee shop once a week. Something to give you respite.
Lindsey, can you email me directly? I’m in MN.
allie(dot)sings(dot)his(dot)praise(at)gmail.com
At this point I’m honestly not expecting a diagnosis any longer. I figured that allergies that celiac would be the easiest things to treat and/or rule out. Now that they *have* been ruled out, I feel like I can move on to other things. Our last allergist visit resulted in a referral to a behavioral health specialist. Suspicions are being slowly but surely cemented, if not yet confirmed.
Thanks so much for taking the time to answer my questions!! I would love to hear more. At this point I’m not denying any possibilities.
Hey folks,
First of all, thanks so much for all you do! What a fantastic group of writers you have here.
My question is about the Vitamin K shot–anybody know much about the toxicity of it, or where I can get good information (i.e. not just from the CDC or FDA)? None of my children are vaccinated, but they DID all have the Vit. K shot.
My 3 year old son has multiple food sensitivities and we’re having trouble getting real help from doctors. He has crazy hyper/violent tantrums and facial swelling when he eats corn (or derivatives), facial swelling and hives/blisters from wheat (or maybe just ALL gluten?), and we think he’s also sensitive to dairy and possibly nightshades–white potatoes, tomatoes, peppers, eggplant. He’s also got moderate eczema that started when he was 6 months old. He’s had some allergy testing, all came back negative, but I’m pushing for further testing. My chiro suggested that if we HAD vaccinated, his ‘allergies’ (no official diagnosis yet) would likely be worse.
So here’s my conundrum: do we know much about the Vit K shot? How much was my child’s immune system compromised by that shot? I’m not sure where to look for this information. Any ideas or personal experience would be helpful!
Blessings,
Allie
Also forgot to mention . . . the information I’ve read on the Vit K shot states that there “could possibly be” toxins used in the production of these shots (stabilizers? preservatives?), but nothing was stated for sure. I read a bit on Mercola’s site, as well as a natural birthing site or two, but would love more info if anyone has some!
If he has this many food allergies, how is his stool? Loose or constipated? And if that’s an issue, you want to look at intestinal healing.
If so – look at Gut and Psychology Symptoms by Dr. Natasha Campbell McBride and of course, don’t feed him any of the foods he’s allergic to… like dairy etc.
Are the tantrums/violence only when he gets foods he’s allergic to or are they on a regular basis? Is he on the spectrum?
Thanks for your reply Lindsey!
I had to think a bit about his diapers (he is fighting like MAD against toilet training!) . . . he goes between normal and loose, I guess. The more grains we have–and right now we’re trying to limit the kids to brown rice and GF oats–the looser his stool. He’d eat apples all day long if I let him, and doesn’t get constipated.
I’m not totally sure he’s actually ‘officially’ allergic to *anything*: we’ve had two RAST blood serum tests and one series of scratch tests, and everything came back negative. That allergist said he didn’t believe that the ezcema and behavioral issues are due to food allergies: I disagree, which is why I’m pushing for more testing.
We eliminated some things from his diet for a time and then reintroduced them, and noted the reactions. It’s hard to do this, though, because I can’t always be sure just what he’s reacting to. So, because I know that eczema can be aggravated by wheat/gluten and dairy, I try to limit those foods as much as I can (though sometimes he gets something accidentally at church from folks not paying attention). I know he reacts strongly to artificial colors and chemical salts and sweeteners, so we do what we can to avoid processed stuff all together. I’m POSITIVE that he reacts to corn, though: last time I gave him some, he had horrible, violent tantrums, hit his head on the floor, screamed (not high-pitched keening, just tantrum-y screaming). That went on for about two days, then it was like a switch was flipped in his brain and he was back to his happy, mellow, affectionate self.
So I’m 100% certain there are multiple food sensitivities, but I’m having trouble pin-pointing them all, and the first allergist wasn’t much of a help, IMO.
I’ve talked to our Dr. about getting him tested for autism–mostly due to the food reactions, but also his speech was a little delayed–and she didn’t think it was necessary. A friend recommended I check into sensory-integration techniques to help him through tantrums, but he only gets really violent when he’s had a suspect food: otherwise, it’s more like he has these “I’m not getting my way” whiny tantrums that last less than 2 minutes. It used to be that he’d have 15-45 minute long violent screaming fits 5-6 times a day or more, depending on what we ate . . . until I started taking out potential allergens.
So, I guess that’s why I was wondering about the Vitamin K shot, and the possibility of injury from any chemicals contained in that shot. As I’d mentioned he is also very sensitive to chemical food additives. MSG makes us all ill–headaches, diarrhea–and once he was given frozen yogurt sweetened with Splenda (without my knowledge or permission). That was the only ‘new’ food he’d had for a while, and he ended up with a bumpy, flesh-colored rash that started on his trunk and spread outward over his arms/legs, hands/feet, and face over about 4 days. After the rash he peeled like crazy for a few more days. Dr said, basically, that kids get rashes sometimes. Keep him clean, give him some Benadryl, call us if he gets worse. :-/ My daughter got a sick headache from the same frozen yogurt, but no rash.
So, like I said, I KNOW that we have multiple food issues. But, since he’s not testing positive for allergies (so far), and doesn’t have severe enough behavior issues that anyone wants to test him for any spectrum disorders, I’m sort of stuck. Because I know he’s extremely sensitive to chemicals I really wonder if he was injured by that Vit K shot, but I’m not really sure where to look for more information. All the docs we’ve been to–except our family practice GP–have told me that there’s nothing wrong. But you know how your mommy-senses kick in, and you just have this feeling? If he was perfectly healthy with no food allergies, why all these reactions to foods?
I just re-read the blog by Blaze “letter to the parents of my sons class” and it got me thinking. My 5 yr old son doesn’t have autism, but has a friend whose older brother has autism. I was wondering if any of you can give some more ideas on how to talk with our non-autism children about children with autism. I think this would be VERY helpful. Or if you could refer me to a good website, it would be much appreciated.
Thanks so much!
Kay
I was reading for hours last night, lost in blog land, trying to catch up on my TMR posts that I had gotten behind on!!! I laughed, I cried, I cheered with excitement and I was furious with anger and everything else in between!! Every single one I read was one I wanted to post and/or send to a friend!! And I did LOTS of them!! You guys ROCK!! There was one that I read and it talked about adding Hope Talk to your “to do” list! Loved it, I went back today to try to find it to “share” it with a friend and I can’t find it?? I’m not sure if I clicked on a link within another post or what but I have been unable to locate it today after going over the articles numerous times!! I would love it if someone could help to point me in the right direction so I can share this one!! It definitely needs to be added to many many more families “To Do” lists!!
Thank you for all your words and for sharing your stories!! I am proud to stand along side “The Thinking Moms’ Revolution”
I’m an ABA therapist (six years in the field) and a hopeful future mom. I want to do everything I can during pregnancy to have a healthy child. Any tips for prenatal nutrition that you can share? Anything you wish you would have known/done? I’ve been taking a good prental and probiotics, I am almost 100% organic (and have been for years) and I don’t use chemicals in my house or in my personal care and beauty products. What else can I do?
There is an entire medical abstract on this subject in the fully updated version of Cutting Edge Therapies for Autism. It also talks about certain ingredients in some prenatals that might be connected to autism, so I’d really recommend reading that article.
Make sure your intestines are healthy as the health of your intestines is passed onto your children. So going sugar free and cutting out disaccharides to make sure you don’t have yeast overgrowth for a few months wouldn’t hurt…
Blessings and health to you and yours.
I love your blog. Love it. So much, that in my new book that I just wrote about my autism journey, called “One of the 88: A Guidebook for Parents of Children with Autism,” I cited the blog and quoted and referenced a post from Tex “Facebook is important!”
I would love to send the e-book free to you guys, and would be thrilled if you would review it. I think it provides a lot of hope and empowerment to parents who are addressing autism–and who doesn’t need that?!?
Please let me know–and keep up the great work. I look forward to seeing your posts in my mailbox.
Sincerely,
Lisa
I want TMR gear… where can I get it? At a minimum, I want a bumper sticker…
Hello!
I am trying to join this blog, but am unsuccessful. I am also wanting to ask any moms out there that have tried MMS. I have so many questions. …..just got back from Autism1/GR conference with SO much on my mind!!! 🙂
hi all,
I know u guys are mainly based in U.S.A, but I wondered if anyone knew of any good paeds in Great Britain?
luv this blog xx
Dr. Natasha Campbell-McBride is a medical Dr. in Great Britain where she specializes in autism. Her own son had it and so she researched it and came up with a cure for her son with a nutritional program. Search her name on the website http://www.mercola.com and read about her and listen to an interview with her.
I was lead to this blog after looking at Dr. Bradstreets website. My son is 19 now. Sometimes it seems like we haven’t gone through 17 years of this. I don’t know what I am looking for. I THINK IT MAY JUST BE SOME HOPE. I haven’t stopped trying. When Marley was diagnosed in 95 there wasn’t much out there. When I started him on a GFCF diet you would of thought I was making him drink live chicken blood with the way every treated my decision. The first “miracle thing” that came out then was secretin (remember that) I have had home therapy, ABA, discreet trial training for 14 years. I have done over 200 NAET treatments,(here in Las Vegas and California) drove to California every 6 weeks to see Dr. Goldberg, for 6 years. I have spent over 20,000 in 2 years on urine, fecal, blood and spit tests and Dr. Yasko’s protocol. I went through 6 months of raging, 5 split lips, cracked nose, bruises, before I found help thorugh the clinical director at UCLA psychiatric unit. I had to medicate him but life had become unbearable, not to metion I had to hire a young adult male hourly, 24 hours a day to stay at my house so that Marley’s rage would not get so out of hand that I would be seriously injured. I have taken Marley to Panama 3 times for stem cell therapy. My wonderful mother has taken a job out of state after 2 years of retirement to help save for whatever else we can try and to pay back our retirements and debts.
Now I am looking in to Dr Bradstreet, low dose naltrexone, and ganoderma extract supplements. I have begun working with a homeopathic Dr. who thinks Marley needs to have his testosterone lowered and his methyl pathway cleared. Also something for his virus’ that I know he has.
Problem is, I have fallen into such a pit of despair. I am weary in that bone weary sense that it seems you can’t find your way out. I work two jobs. His father has stopped any financial help when Marley turned 18 (boy that 350.00 a month would come in handy now)
Marley has going through something. Yelling all the time, agitated. He got up at 3am and stayed up until our alarm went off at 530am. I won’t give up on him, I keep searching. I try not to get disappointed when I read how miraculous all these treatments are for other children but when I try them it just doesn’t seem to make much difference.
Am I the only one who this happens to? Can someone give me something new to paste on my fridge to keep me going 🙂
I love your blog by the way,
Thanks
Kristine
Keep it up. That you have fought so long for your child is a testament to your love. This Bible verse helps me as I am a believer… I’m a big believer in prayer.
Let us come boldly to the throne of grace that we might receive mercy and grace in our time of need. Hebrews 4:16
Is he GFCF and on a nutrient dense diet?
Do you give him lecithin to help his liver and brain? For some children, giving them a high quality source of non GMO lecithin daily, helps their liver work and in turn helps them detox which lowers their aggression.
Have you tested his trace minerals to check his copper loads and manganese levels? If he’s high on copper, you can give him a high quality zinc to bring them down. It also helps with methylation and cognition according to Dr. Kenneth Bock author of Healing Our Childhood Epidemics: Autism, ADHD, Asthma, and Allergies. I believe the lecithin helps the liver filter the manganese which decreases the aggression. High levels of manganese are typically found in aggressive kids.
Can we change the autism symbol?…a puzzle piece really? People keep giving me t-shirts and coffee mugs with this symbol on it…I hate it…Is it just me? I am not ashamed at all that my son has this diagnosis…but it’s a lie…it’s not a puzzle, there is hope & we know a lot. What does sporting this symbol in public say to the world? “No clue…sorry” It’s like making the symbol for autism a question mark…I saw a puzzle piece with a skeleton key attached to it. That’s better…there is a key to this puzzle…there is hope.
Goddess…My boy is also named Harry. He is 5…almost 6! He is gorgeous!…and, now that he is starting to talk, really funny and articulate. For some reason, I thought when he did finally start talking it would be like “caveman talk” but his speech is grammatically correct. Which confirms our Ped. Neurologist was WRONG!…Harry’s receptive communication was in tact. He could understand us and just couldn’t express himself. Anyway, my question is…How do you hid supplements? I am like a mad scientist hollowing out organic jellybeans and of course, Harry’s juice always has something in it. But for the bitter stuff, I could use some help. Thanks, Dee
I love that you have a Harry too!! It is funny that you say that, because I know that is what Harry will be like…his receptive is above age level. When it comes out, I know it will all come out complete! I admire your creativity with the jellybeans, lol. Honestly, Harry would never eat a jelly bean, or anything like that (now my other two—different story!) He has zero sugar (cane) in his diet, mostly because he refuses it. He eats fruit, but that’s as close as we get. It takes a lot of effort to get him to eat something new, so I focus on the stuff that I need him to eat. I put his supps in water, and he makes faces and chases it with more water. That’s just how he does it, not saying that is ideal, or better, or anything. He only drinks water. He just knows at this point, there is no fighting it, I will not give in, and he has to take them. So he does. But Poppy has had some experience in this arena. Her compounding pharmacy hid stuff in organic gfcf chocolate. You just gave me an idea for a blog piece on this though….thank you!! Friend Goddes TMR (1 s) on FB. If you are going to AO, stop by our table. xo Goddess
Love whats going on here! Were there any posts between November 2011 and February of his year?
Can anyone make a recommendation for either a facility or doctors anywhere in the u.s. that is top rated for a full soup to nuts assessment. I have a 12 yr old son who has an auditory processing delay, and has lots of check marks on the autism list, but is higher functioning? We have been very involved in therapies, speech, or,pt and lots of tutoring since he was 18mos. He has seen 2 pediatric neurologists at age 4, and neither could agree on a diagnosis for him. We need help.
Our doctor is in what I believe to be one of the top tier of autism doctors – Dr. Julie Buckley in Florida. If that is too far from you, they can provide you with a list of doctors across the country that they believe can treat your child on par with their treatment. We fly there once a year.
Within 15 months of diagnosis and 12 months of seeing Dr. Buckley, I don’t know that my child will qualify anymore, unless it’s for GT when he goes to Kindergarten… it will be close.
We also see Dr. Buckley. Our sons first appointment was the day after Easter this year and already we have seen great improvement. Her book, Healing Our Autistic Children is also a great resource.
What is the best way to get my son’s gastro-enterologist to look beyond the surface. I have an appointment next Tuesday with a Kaiser Permanente doctor and I’m hopping to get help with my Severely autistic son’s constipation and pain. I recently switched him to Kaiser after 12 years of going from Doctor to Doctor and getting no where. Most of the help I got was from the Autism forums, but now I need a Gastro Doc and I can’t afford to take him to Thoughtful House in Austin Texas. Any thoughts?
What sort of gastro problems is your child having?
You can look at intestinal healing using the Gut and Psychology Syndrome diet by Natasha Campbell McBride. It’s basically second generation research on the Specific Carbohydrate diet, with a more elegant and intricate take on health conditions, specifically those that are neurological manifestations due to intestinal issues.
I have been Thinking about autism and vaccine injury. It seems to me that ” big pharma and co” have gone thru this before. Anybody remember Thalidomide? What was done for those injured by the prescribed drug? What about the docs involved? We can probably expect something similar to happen with vaccine injury and autism. Any Thoughts?
I would like to ask your permission to link your blog to a post I am currently writing, along with the video of your children?
aefountain, yes! Thank you for asking and we apologize for the delay. Of course anyone who would like may link our blog / video to theirs. We appreciate it!
When pregnant with my first I was tested for MTHFR due to my sister’s pregnancy losses. I have recently linked it to one of the causes of my soon to be 4 year old’s reaction to her 2 year shots of MMR, flu and H1N1. I am obsessed with the topic and am wondering if you all have heard of it? There is a doctor on a mission to educate about it on mthfr.net his name is Dr. Ben Lynch. I am sure you guys have explored this, but if not it is HUGE in regards to autism and the predisposition for reactions!! JUST HUGE!!!
My son was tested and does have the MTHFR mutation. My understanding is the MTHFR is made up of A1298C & C677T. My boy has issue with the A1298C which does not allow him to make enough B12 for proper brain/body function. However, I am told there are ways around this with B12 injections which we have started doing every other day in addition to other suppliments. We have not seen earth shattering results but it has only been 2 months & we are hopeful.
So…anybody out there using camel’s milk? While I could afford it (barely), we saw some great progress in our daughter. Unfortunately, we are just plain out-of-money.
Dear TMR,
First, Love you and what you stand for!
I have a question regarding getting my son to eat. He is 3 and Autism has him in a strangle hold. He lost the ability to use utensils & drink from a cup. He is addicted to crunchy finger foods only. We have been GF/SF all natural/organic for 1.5 yrs. Have tried and continue some Biomeds. He is allowed Raw milk & cheese because he tolerates them well. He is practically non-communicative; he knows just enough to ask for a few things.
I am attempting to start GAPS (have my broths & soups ready) but I have a 4mo baby to care for also (and no assistance during the day as hubby has to work) so I cannot sit with him all day… I tried a bit of ABA, 1 bite for 1 reward type deal, but he is refusing even that (scream fest), so after 20 mins I let him down without food or reward. I guess I am hoping one of you may have some tips that I have not thought of.
Thanks in advance,
Viva la Revolution!
Goddess here. During the worst of Autism Harry ate 5 foods, if you count milk as a food. Cheerios, milk, yogurt, chicken nuggets and gyro meat (my dad is Greek :)) Meanwhile his twin was eating rice-stuffed tomatoes, every veggie on the planet and as much fruit as we would permit. We went GFCF and did feeding therapy. First all he had to do was tolerate a food on the plate (and he dry heaved looking at things back then). Once that was okay, he had to touch it, next he had to pick it up and throw it away–off the plate. When we got that down, we started stacking carrot slices and finger-painting with applesauce. Next came touching the food to his lips, then throwing it away again. Finally came the actual bite…and that was after many weeks of building up to that point. It required some holding of the hands and a little forcing into the mouth, but once it was in there, he usually chewed it. It would take a few more of the same type attempts until he would take that food on his own. Its not for the faint of heart, but it did work.
My dad cooked up a mixture that we still use today. Its kind of soupy mush, but basically all-organic combo of ground beef, tomato sauce, every veggie he can think of, rice, beans, and whatever else we are trying to get in him. It saved him. I can’t recommend this, but initially I put it in front of him and if he refused, I put it back in the fridge but didn’t give him another option. He never went a day without eating–he decided to eat it eventually. I liked that better than the feeding therapy method because it gave him the power to choose what to do. That’s still how I introduce something important here. Hope that helps.
So things were not getting done in Ohio. I took the very small settlement I received from my disability and moved us 1500 miles away to TX. We are treated with respect. The schools here provided my son with the assistance he needs and he is mainstreamed 1/2 days now and he is fully potty trained in just 2 1/2 short months. It was worth leaving everyone I knew. But I’m still concerned about getting a diagnosis because it determines the types of programs available to him. I have had the first meeting with his school and besides falling in love with him as everyone does, they shared with me his label from the Ohio school. Mental Retardation. I was to say the least, floored. This information was not in any IEP meeting before. Needless to say his current teachers and I completely disagree. But will this previous diagnosis affect the testing and a future diagnosis?
Hi All,
Little Bird is 7 and has a very leaky gut. Chronic constipation has allowed toxin after toxin to invade her little brain. She’s been GFCF for 3 1/2 years- no immediate results from infractions except constipation. Of course, after 4 days of not pooping, she loses speech, stops engaging and gets SUPER stimmy, scripty, etc. as soon as she poops she’s baaaaaaack!
Major bacterial overgrowth right now. Treating with liquid gold known as vancomycin and nystatin cocktail. Used to have to treat with flagyl every 8 weeks. I’ve cleaned up her gut enough to only have to treat with antibiotics every 6 months. Progress!
For the past week, her poop (when she goes) is grainy/sandy. What’s this all about? Anybody??
Cheers,
Dani G
If you have frequented any of the autism medical boards on Yahoo Groups, you know that grainy/sandy poo can mean many things to many people. It coud even mean your treatment is working. Are you a member of any of the Yahoo Groups that specialize in Medical Autism concerns? If not, find one – fast. They are awesome support networks, and have hundreds of families experiences to pull from.
One of our favorites is GFCFKids – which goes way beyond diet. And TACA (Talk About Curing Autism Now) has a great “poop page” http://www.tacanow.org/family-resources/the-poop-page/
Good luck!!
It’s true it can mean different things to different people — consider oxalates as a possible issue – there are other symptoms that go hand in hand with oxalate dumping that might help u figure out if ur Little Bird’s grainy poop is oxalate related…. Good luck!
A friend’s son (4-5) had a reaction to his vaccines. He is now stuttering and is fidgety in school. I pointed her in the right direction to NVIC, VAERS, and info on vaccine reactions, PANDAS, and biomed (which has helped my son with autism so much). She took him to his ped., where surprise, surprise, it was brushed off as a coincidence. She wanted him tested for strep also (PANDAS), they refused because he could be a carrier. Supposedly they reported it and all she has is a referral to a neurologist. She feels as if the doctors just don’t care anymore. I know that feeling all too well. Can anyone suggest a good doctor in the Philadelphia area who can test / treat him? Thank you.
What a good friend you are – searching for answers for her child! WTG – true Thinking Mom Mojo!
From the pandasresourcenetwork.com – Dr. Scott Smith is in the Philly area. Here’s some deets on him:
Scott Smith, PA
James A. Neubrander, M.D.
Full Potential Wellness Center
Specializing in Autism/PANDAS
Edison, NJ
http://fullpotentialwellnesscenter.com
http://www.crneubrander.com/
[email protected]
I hear that he’s a good egg. Good luck and keep us posted!
Hoq do I convince patent of children with SPD, ASD, asthma, and unidentified allergies that their children are sick? We can provide all the therapy in the world but if we can’t convince them to change eating habits, avoid environmental/food toxins, add supplements the progress will be hindered. Any thoughts would be appreciated! Thanks
That is the $65,000 question, isn’t it? As moms of these kids, some of us remember when folks gave us subtle or not-so-subtle hints about things that might help our children. Sometimes we welcomed that person as an angel giving us a nugget of information to help our kids. Other times we wrote the person off as a busy-body or whack job. You can only make the information available. Remember that old saying “You can lead a horse to water, but you can’t make him drink”.
Your organization and team look amazing! Do you have a lending library? Consider stocking it with a few copies of Kenneth Bock’s book “Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies” or Brian Jepson’s “Changing the Course of Autism”. Make handouts available that list websites, or excerpts from those websites, that offer help for people with related illnesses. We all love TACAnow.org. The resources on that site are almost limitless and geared toward “real people/families”. Sometimes listing stories from other parents in a similar situation will help them relate the information to their situation. That is kind of what the Thinking Moms’ Revolution is all about.
Personally, my son was receiving speech therapy from the age of 20 months. At age 5 he still was unable to speak or sign more than a few words. We started to address his physical issues – chronic constipation and extremely low tone – and he was attempting speech within weeks. I am not saying he did not get anything from those years of therapy, but he has gotten so much more since his physical issues, and the pain associated with those issues, have been resolved. Many people do not “see” the physical illnesses connected with these diagnoses.
Dr. Bock’s book is my bible! He is awesome, right?! He is now my daughter’s physician and I look forward to traveling back out to see him in just 2 months. Funny how life changed to the point where HE is now the rock star in my life- even had him autograph my book!!
Little bird’s got the chronic constipation AND extremely low tone, too. In what ways did you address those issues in your own child? Huge progress? Share!!
Disclaimer: I am not a doctor, although I have spent hundreds of hours in doctor’s offices and THOUSANDS of hours in their waiting rooms… but as mom’s we share information –
When our pediatric gastroenterologist noted my son’s low tone as well as his chronic constipation, one of his suggestions was a trial of a mitochondrial cocktail. This is a “cocktail” of different vitamins/supplements that target the mitochondria portion of the body’s cell – the part of the cell that is responsible for the body’s energy production. For us, the higher levels of carnitine in this cocktail resulted in some nice muscle and strength gain, as well as regular BMs. Talk with Dr. Bock (yes, he is awesome!) and see what he thinks, given all your Little Bird’s issues. Good luck and hug Dr. Bock for us.
I would second the suggestion of passive propoganda. Some people just aren’t able to cook at home for hours and the concept of dietary intervention is just too overwhelming. They will do their best, and we should accept that. On the other hand, if it weren’t for the University psychologists in our Asperger’s diagnostic process suggesting biomedical and dietary changes, we might never have turned down this road! About 90% of our son’s regression has been reversed in the past 12 months! We are still working on chronic constipation though… would love your thoughts on how/what to pursue there!?
Congratulations on your son’s better health!
Chronic constipation is an ongoing problem in so many individuals living with autism – and beyond. Many of the Thinking Mom’s ASD kiddos have siblings with tummy issues as well.
You can visit TACA’s Poop Page. http://www.tacanow.org/family-resources/the-poop-page/ I love recommending this page – not just because of it’s name – because it has SO MANY wonderful ideas for helping with constipation. We all know that if you’ve met one kid with autism, you’ve met one kid with autism. You can pick the things you have not tried, or the easiest ones for you to implement. This page is how I found George’s Aloe which, during our worst constipation years, was a miracle-worker.
I hope you find something that works. Sending you great pooping vibes….
Thank you to my dear friend for sending me this link and for all of your help in the past!!! I thought I’d just throw out a question to the other writers. My son is on the AllKids (state medicaid) insurance because he was too expensive to insure on our own because we’re self employed. Do you know of any natural doctors that will look at him and do some testing? He’s 6 and developmentally delayed. He’s not on the autism spectrum but has behavioral and learning issues, low muscle tone, etc. He was on constant antibiotics and think this last episode was from augmentin again and we’re just trying to recover from that. My friend, and one of your writers, made me aware of the ammonia toxicity of augmentin…unfortunately too late for my son. Anyway, I have feeling his ammonia levels are high and there may be other things going on and would like help outside of the medical community. Thank you!
Start with things you can do at home. Look up the wonderful ladies blogs for information, then go to tacanow.org and look at their journey blueprint. It gives multiple starting points and information to get you kick started. As for the ammonia, if he has gut issues (constipated, diarrhea, picky eater, etc.) then the ammonia may be from the bad bacteria in his gut (clostridia, yeast, etc.) As for taking insurance, most providers cannot take insurance and still take even close to the time necessary to figure out the complexities of these children’s issues. Much of the bloodwork and some of the other testing is covered, however. I would look in your area and lean on the community here to get you on your way.
Much of the testing and medical discovery you can do for your son is not autism related but it is looking for medical clues for what physical things could be contributing to his delays or other issues. I think Barry S. hit many of the nails on the head with his response to your question. You can also come to ThinkingMomsRevolution on FaceBook. There you can meet up with some of the Thinking Moms in an even more relaxed venue and be pointed to more blogs and websites that are just chock full of the information to get you started.