February 2, 2016
When our son was born, I knew we didn’t want to vaccinate right away, circumcise, or do eye drops. And we didn’t. The pediatrician and I made an agreement that we would do vaccines one at a time when he turned two.
When he turned two, my gut screamed not to do it. But I had made an agreement, and I was going to honor it. It was horrible to watch him scream when they injected him. It was a little over a year later that he regressed after the flu virus. Had we not vaccinated, he might not have had the toxic level to regress.
Shortly before his third birthday, we were having a hard time in our marriage and I just didn’t have the energy to keep nursing. My gut wanted to continue. My brain didn’t. We stopped. A month later, the whole house got the flu and my son regressed. He went from speaking in sentences to not speaking at all. He went from interacting beautifully to being terrified of people and not looking people in the eye. Had I kept nursing him, he would have had my immunities to help him fight the virus.
A year later, we finally had made our way to a DAN doctor. I’d done a ton of reading, and my gut said don’t chelate. The DAN let me say no to chelation for a little while, but flat-out insisted we do DMPS per his protocol about six months later. Two doses in and we had a significant further regression — his ATEC went from around 50 to around 90. It took me nine months to get him back to his pre-chelation functional level. Had I not chelated, his body wouldn’t have had an increased level of toxins get stuck in pathways that genetically were incapable of detoxing them.
Now, I always try to remind myself to listen to my gut. I regret not listening to it earlier. I regret that it took major damage for me to realize that, at my core, my Mommy gut is very intuitive. So I never say to parents “you must do XYZ.” I say instead “what does your mommy gut tell you?” We are tapped into our kids on a truly cellular level — after all, most of us shared a body for nine months. Trust that connection.
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Yes, our gut actually has brain tissue in it! We vaccinated a couple of times, with our older children, in spite of my Mommy screaming, “No!” But, because of moving a lot, plus reading a library book that shows statistics of death from vaccines were higher than deaths from the disease…we didn’t do a full schedule. Sure enough I never heard of, or met anyone that had many of those diseases, polio, etc.
Our eldest, who had the most vaccines had 14 years of occasional epileptic seizures, in SPITE of going on meds. Second child has developed fibromyalgia, partly because of poor lifestyle choices, but apparently vaccines can set t
he stage for auto-immune diseases.
The third and fourth children had no vaccines, and, are in their 20’s, with absolutely no chronic diseases. In fact, aside from a few colds, and the flu twice, they are rarely ill. At college, there was a whooping cough “epidemic”…neither of them got ill, while hundreds of vaccinated college kids DID get it!
Thank you so much for writing this!
our instincts are soon powerful and soon profound!
Amen Mama! We went thru some similar experiences and have now been fighting for almost 8 years now to undo the damage. If I would have listened to my gut and stood up to the doctors or just simply changed doctors that had the same mindset things would have been much better. I have gotten past the point of beating myself up because I did not know he had a primary immune deficiency and that he was one of the kids whose immune system was a train wreck. I know now and I always go with my gut and I have worked hard to find doctors who respect me and listen to me and they ask what does your gut tell you mama !!! It happened last week when he broke out with a horrific rash on almost half his body. It was fungal and I was right and once we got him what he needed what I had suggested it cleared up in 48 hrs.
Hi Holly, My son is also experiencing fungal infections, this is nothing new. However, our Dr. Is no longer easily accessible, or very helpful. I know my son needs at least 10 days on diflucan and he won’t call in a refill with out office visit. No appointments available until 3/9. My child can’t wait until 3/9. Any advice – my Google searches haven’t been very productive. I need a new Doctor who is willing to work with and listen to me! We are in long Island NY. Anyone love their Dr and want to share?
I hear really good things about Larry Palevsky in Northport.
Hi Race: have you heard of Dr. Bock? he is in Rhinebeck, NY and we saw with him about 7 years ago at the advice of our neurologist (Dr. David Perlmutter) we live in SW Fl so it was quite a trip to get there but it was worth it. We only would physically need to go to the office 1 time a year and they would do phone appointments and I could easily get refills. It has been several years since we have been there because I was eventually able to find good DAN docs closer to home but I would go back if I needed to and I don’t think it is to super far away for you. About 1 hrs drive from the city. As far as multiple fungal infections it rings a bell or raises a red flag for me because we just this last year found out on top of his Autism and PANDAS he has CVID a primary immune deficiency. We had been to every type of specialist except an immunologist. The multiple pretty much life long fungal infections is what was the first clue for the immunologist. His is at the “cellular level” it may be worth looking into. My immunologist told me this is the root cause of all of his problems and started him on SCIG treatments and we have had major improvements with developmental gains that we have worked on for many years. Still non-verbal but is typing now and can read and do some math. Hope this helps.
We are also in SW Florida. We have struggled for years with immunological issues as well as the ASD, but can’t seem to get a clear answer. What doctor are you working with? I’d love to know if there is a local doctor nearby.
We use Dr. Kevin Rosenbach in the Naples area. I know there is also a good female based out of Miami I can try look up her name and let you know but we have not used her.
Thanks Holly. I will look up the Naples doctor. Miami is further as we are in Sarasota. I was interested in seeing your other response about Dr. Murphy in Tampa too. My son’s first diagnosis as a toddler was this generic “immune deficiency”. We saw a leading innunologist in Atlanta who blew it off (she treats the severe boy in the bubble type cases). The most prominent infection he would get was strep. He had it 13x in one year….before he was 1! Had chronic sinus infections, ear infections, scarlet fever, any virus that you can imagine, pneumonia etc.. He is now 10. He’s better in that respect and not as sick, but we use a lot of probiotics and supplements now. However he still has chronic GI issues, low weight, allergies, asthma, petechaie (sp?), food restrictions etc.. Long story but just last month were referred to Dr. Murphy but she won’t take insurance so we are seeing the other MD in the practice. A Dr. Wojas about possible PANDAS. He has seen so many specialists I’m a bit apprehensive on what if anything this will do for him.
He also had an “allergic response” (105 fever and lymph nodes that swelled up in groin to golf ball size and eventually had to be evaluated by oncology because they didn’t know if it was lymphoma) to DTAP vaccine. One that had to be reported to CDC.
Feel like finding this website and thread is serendipitous at the moment. Thanks for all the information to everyone:)
Jenn, read yesterday’s blog on a child with PANS. (By the way, if your child has had strep so many times, PANDAS, a subdivision of PANS, seems very likely.) It’s still not a particularly well-known condition, but it can be truly horrific. Also, look up everything we have on the supplement “Restore.” It’s intended to help heal the gut and restore diversity to the microbiome. Glad to have you here! We discuss topics like this quite frequently.
Jenn: I found our consult with Dr. Murphy although extremely expensive, very informative. Money well spent!!!! She was our turning point and untimaty lead us to our immunologist now. She did mention a good PANDAS educated immunologist that she has worked with in the Sarasota area but I opted for Naples because that is closer for me. My Naples Doctor knows the Sarasota doctor and said he is top top notch but is possibly retiring soon. I am very happy with our Naples dr. But just thought I would mention the possibility. Dr. Murphy’s office will know the name of the immunologist in Sarasota If he is still practicing. Just curious has he ever been given IVIG or SCIG (Immune Globulin) ? I wish you all well and please keep in touch and let me know if you need anything else
Holly, I would love to know of a decent immunologist in Sarasota. The other half of our story is my youngest. He is 2 and was diagnosed with a rare medical disease / mast cell disease before he was one. (Clearly there is something wrong with my genetics:( ). We have to travel to Boston for him, but while local we have to use All Children’s immunology. Due to public nature of forum, I will say it’s been less than ideal. If there is a good local immunologist who had knowledgev that would be wonderful for both of the kids!
Unfortunately, I’m a single parent for my older kiddos so Dr. Murphy isn’t feasible. Father refuses to acknowledge or pay for anything because “autism isn’t a real disease like cancer” amongst other beliefs. I won’t get started as that’s likely a whole different blog!
My middle guy has never had ivig or the other one. He is formally dx with “t cell dysfunction” which I don’t understand what that means exactly. All I know is he was born with petechaie, still gets it intermittently, had every kind of virus and “unusual” infections on and off since he was little. He just got over a staph infection this past December again. The strep and scarlet fever non stop until he had everything removed. He didn’t respond to some of the vaccines so they gave him adult ones for pneumonia (this was 9 years ago, I’m in heakthcare, and I wasn’t educated then). Then had bad reaction to dtap and flu vaccine. It’s long and involved so don’t want to bore, but I don’t feel like we have an answer. His tests didn’t show ige or iga issues so they have said no need for ivig?
Thank you so much for connecting on the local resources:)
Don’t assume there is “something wrong with your genetics.” Many of the issues children are facing today are due to epigenetic influences. In other words, they are driven by changes in gene expression, which is in turn driven by environmental exposures. Those epigenetic changes can be changed back. Also, research de novo mutations and autism and you will find that many of the common mutations in autism are new to this generation, and must be due to environmental exposures as well.
I am so, so sorry that your children’s father is denying the reality they are living. I’ll be praying for a change of heart. Good luck.
Jenn: I will try to figure out the name of the immunologist in Sarasota. During our appt with Dr. Murphy she said his name but I did not write it down and then when we started with our current doc in Naples he had also mentioned his name. I will see what I can do to help make things easier for you. I can only imagine having 2, we have been around the globe looking for answers and hope for our 1. also. I was relieved when we finally found answers in our own backyard. I am all for trying to help. I know Naples is a drive but Dr. Rosenbach is wonderful and I can attest to that.
Jenn: Dr. Mark Ballow (Sarasota area) have never seen him but he was recommended by Dr. Tanya Murphy and our Naples doc spoke highly of him. Not sure if he has others in his practice but this is the name I have. Hope this helps. Holly
Thanks so much for the referral. Sounds like our children have a lot of similarities. My son was also diagnosed with PANDAS about 16 months ago. Great to hear of your success in helping your child. Every step in the right direction counts, a lot! I will contact Dr Bock today. Thanks again, Tracy
Race, just another bell is ringing and when we consulted with the PANDAS specialist (Dr. Tanya Murphy USF in Tampa found her from the PANDAS network) she is a leading researcher she informed us that a very large majority of PANDAS kids usually have some type of underlying Immune Deficiency. That is ultimately what prompted me to get him to an immunologist per her advice and that is when the immunologist ran multiple tests and found he has a form of CVID. our insurance totally covers the treatments for it now which is immune globulin and once we started the immune globulin is when we noticed the developmental gains. He will need to be on the immune globulin for the rest of his life and it is super complex so it was the immunologist that pin pointed the CVID.
Wow I feel like I’ve finally connected with someone that understands. My child still hasn’t been properly diagnosed and treated. Thankfully we have been able to help him. He used to be completely miserable most of the time. Sinusitis, gut issues, rashes, allergies, swollen glands,triple vision etc. Anyway everything is better, but nothing has really become history if you know what I mean. I can’t tell you how much it means to me that you are willing to help. I really feel like Dr Bock might actually make a difference.
Getting good ready to head out for parent training. As soon as that’s done I’m contacting Dr Bock to get the ball rolling.
I actually have 2 sons with autism, but my baby 12 yrs, is the one that seems more damaged. He is also the one that a flu vaccine at 18months. That was definitely the turning point for him
That was the last vaccine he or his brother,(13 months older) ever received. Still so angry!!! Dr practically demanded he have MMR that day. I had heard rumors of the dangers of MMR and a link to autism. Never heard anything about the flu shot though so I allowed it. You can guess the rest. Less then 2 weeks later my happy baby was gone.
Ok, no more reminiscing. Time for action, again. Please know that no matter what happens with Dr Bock, you comments have been extremely helpful. You’ve given me new hope and direction.
Thank You! Race
Race: our stores are so Similar I think there is a reason we connected in this blog. Dr. Bock is an amazing DAN Doctor ask him to see if he can rule out or look for any type of “primary immune deficiency” Ask about any type of CVID he can maybe help you find a good immunologist there are test that I am not sure he is aware of but an immunologist will know what to look for. The flu shot is what did our son in also. Our son NOW has a medical waiver for absolutely NO shots. I get furious when I think back too but anger does me no good. Just gotta move forward.
Holly, so thankful we connected. Kind of feels like I found a long lost friend. The similarities in our stories are amazing. I completed the new patient form on line yesterday and should hear back by tomorrow. Now that I have a direction I can’t wait to get things rolling. You’re experience with this and advice are priceless. Thankyou for restoring my hope, and determination to help both of my boys.
Hope your day is a good! Race
Race: I am happy to help. I have been reading posts at TMR for quite some time now and have never really posted much. It has been a healing experience for me to write about our boy. I pray that you find some answers. We are all in this together and TMR is one big community of people helping people. I will keep your family in my thoughts and prayers! Holly
Hi Holly, how did you know it was fungal and not an allergy?
He also has allergies and gets rashes from the allergies. When this rash presented it was way different. I just know my boy and his body and am in tune with him and my gut kept telling me it was fungal. This particular rash was very different then his allergy rashes. It was so extermly bad it was not presenting like anything my “good docs” had ever seen before. I just had such a strong feeling it was fungal.