Thinking…Outside the Box

Some people are born thinkers, and some grow up to be thinkers.  My husband and I were born thinkers.  We always asked “why”.  My mother in law could tell some pretty fabulous stories about my husband and how he would drive everyone absolutely INSANE with his questions.  I blame him for my inquisitive 5 year old.  I had a knack for asking questions myself, but would then sit and ponder and imagine.  He was the facts man.  Once he had an answer, he’d ask more detailed questions to get a more detailed answer.  We both, however, weren’t necessarily the type to think outside of the box.  We followed rules even though we may have questioned them, but we weren’t rabble rousers or the type to really test limits.  That is, until our son regressed and we had a doctor tell us that he wouldn’t amount to anything.  That is when we really became thinkers — and thinkers that started to look outside of the box we lived in.

Early Intervention was not working.  We were seeing no improvements and actually saw our son regress even more.  Our pediatrician wasn’t very supportive of the GFCF diet, however I knew it was something I wanted to try.  Within 3 days of removing casein, our son was making eye contact!  Not only was he making eye contact, his ears and cheeks were no longer red!  I feverishly went through the entire kitchen and removed gluten.  We saw even more improvements.  This really catapulted us into the world outside of our little ‘box’.  Some family members thought we were ridiculous and even to this day, think it is some sort of impossible feat to go gluten and casein free.  I assure you, it’s not.

 

We immediately put ourselves on all the top Autism doctor’s waiting lists and dove head first into biomedical interventions.  We thought we were really going to see these vast improvements like so many other parents I had begun hanging out with online and in person.  This wasn’t the case for us.  Our son is what all the DAN! Doctors referred to as a “non-responder”.  We stuck with it, hoping and praying the next protocol would be the one.  Our silver bullet.  In hindsight, various different protocols certainly helped, however not to the extent we wanted or saw in other children we knew.  It was so disheartening.  We were pouring so much into healing our son’s GI, to take his pain away so he no longer had to self abuse to disperse the pain, but the gains were slow.  They were so slow that we did not notice these improvements until months later.  We knew there had to be something someone could do that wouldn’t take as long.  I am not known for my patience and it really shows when it comes to taking my son’s pain away.

 

Our son was a patient of some pretty remarkable, well known and well liked Autism doctors.  Now, I have no ill will against any of them, and honestly – I’m probably going to piss some people off here, but they don’t all know everything.  As much as they think, work and live outside of the box – they do get stuck in their own boxes that they create.  This has been our experience with our son.  These amazing and remarkable doctors can also get tied up in their own protocols.  We’ve spent many months if not years on protocols that weren’t working.  When we told the doctors we didn’t think it was working, “let’s try something different” some of them would convince us to stick it out another X amount of months.  And we did – only to learn that it really wasn’t helping and we should have moved on.  As much as I feel like we jump doctors and protocols, Tex told me that I don’t jump ship soon enough.  “Who cares? If you feel like it’s not working…move on!  You’re wasting time.” She said.  You know what?  She was right.

I called her when shit was hitting the fan with our son and those words kept ringing in my ears.  We fired all our doctors at that time.  Bye-bye biomed.  Bye-bye homeopath.  I was on the hunt for a new healer.  I didn’t know what or when or how…but I certainly knew why.  I didn’t necessarily have to think really hard.  She was in front of me for the last year.  I went back to school and one of my instructors was a Naturopath.  We got to talking one day, I mentioned our son’s MTHFR deletion and she asked if we were supplementing with enough 5 MTHF.  Huh?  Needless to say, all of our DAN! Drs missed that, among other things but that’s another story.  So, when I decided we needed to think outside of the “Alternative Autism” box, her face popped into my head.

 

She immediately made us start supplementing him with 5 MTHF.  We then made the appointment and went in to see her.  Now, I have to say, she has absolutely no Autism experience as we know Autism.  What I did know, was that she was really sweet, a pretty decent instructor and wanted to help my son.  She ran some pretty typical tests that our previous DAN! Doctors ran, but she ran one in particular, that in my opinion, should have been run years ago.  When we received the results, it was no shock that our son’s cortisol levels were through the roof among a handful of other neurotransmitters.  No one in the past checked these.  What was checked were neurotransmitter precursors, but not anything like Cortisol, Epinephrin, Norepinephrin…none.

 

The day we started his new regimen, he went to bed without a single complaint.  He fell asleep quickly and woke up the next morning extremely well rested.  He seemed calmer and far more compliant than we had seen him in 5 or more years.  Talk about a relief!  If Tex hadn’t shared her opinion with me, and had I not been willing to look outside of yet another box, I don’t think we would have turned things around for our son so quickly.  He is still having some health issues, but by reducing his stress markers, his health crisis is stable.  We are still working with specialists to get things figured out and under control, but he’s made a vast improvement from just taking him to this new Naturopath.  I am so grateful for her.  She did not look at his Autism — she looked at the symptoms as if he was a Neurotypical child and went from there.

 

In our quest to help kids, so many of us are guilty of not looking outside the parameters we create.  That goes for all of us.  Us, as alternative, GFCF granola crunching, tree hugging, parents, to the wonderful Autism doctors and practitioners working so hard and diligently to help heal our kids.  So after all this, I ask one thing — for all of us, each and every one of us, to stop.  Stop and look outside of the box.  If things aren’t going your way, try to think outside of those parameters set before you.  They could be your own, your doctor’s, your teachers, family…the list goes on.  I was so discouraged before talking to Tex, but she really opened a door in my brain.  I was ready to throw in the towel.  Our son was in such a bad place and we felt like we’ve exhausted our resources.  What was happening was that I was stuck.  Stuck in a box that I, along with our Autism doctors, created.  So for all of you out there – don’t give up, and keep thinking.  The world is out there.  It’s waiting for you to discover something new.

~Cupcake

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23 Responses to Thinking…Outside the Box

  1. Tammy says:

    My 14 yr old son is also a non-responder. We have been at it for 12 yrs and still are waiting for our silver bullet. It’s very frustrating. Can you please tell me what area of Wisconsin Your ND is in? We are in Iowa so could possibly travel to her. Thank you so much for your post!

  2. Thinkingmominthedesert says:

    I consider my son to be a responder to the biomed protocols we’ve implemented even though there have been no immediate, dramatic results. After a whole year GFCF (about 3.5yo) he still was not talking. However, after 2wks into it though, he progressively started eating healthier, pooping better and sleeping longer. Just those 3 things alone were enough for me to stick with the diet & to continue to pursue biomed. And boy am I glad that I did bc eventually we did start to see breakthru’s and major progress. Sloooow & steady really DOES win the race. But I have to say it wasnt until we took a huge leap of faith and thought waaayyy out of the box making a cross country move from the east coast to the southwest. He was 4.5 yo when we moved. THAT was when he started to come alive! After some time passed and we settled into our new life, the gains in language, improvement in health and changes in behavior that took place far surpassed any of our predictions. The biggest impact, IMO, was the weather here. The cold,wet winters & damp,moldy springs wreaked havoc on my son’s system. The warm, dry, moderate climate in the SW has agreed with my son in every way. West coast lifestyle is laid-back, calm & health concious. U can find glutenfree everything everywhere!! The nature surrounding us opened his eyes to a whole new world and his love of mountains and cactus became the ultimate motivator-an inspirational source of enjoyable learning. A huge bonus-the ability to participate in outdoor activities 365 days a yr-it’s a godsend for a family with energetic, hyperactive boys.

    I know to be able to move is certainly not feasible for everyone for a multitude of reasons. That was not the only reason why we moved. It was only 1 of 4 important factors that lead to the decision but it was the one we were taking the biggest chance on. Im just saying that for us, our move was that out of the box thinking protocol that has contributed the most to his recovery. I know he would not be where he is today if we still lived where we used to. I think that there are external environmental issues affecting people’s health & well-being that they may not necessarily be aware of. Factors pertaining to the city u live in like the soil, air quality, the tap water system for drinking & washing, climate & weather, etc…as well as a number of specific things that may occur in the home u r living in such as chemicals in hardwood floors, allergens in carpet, lead & pcb’s in paint, chemicals in furniture or cleaning products, plastics, Teflon, etc…
    I just think its important for parents to not look towards one single magical “thing” that’s gonna be the miracle they wanted. In our case (and I believe in most ppl’s cases), recovery is dependant upon the timing of a combination of many things working together harmoniously to produce healthy balances in one’s life physically, mentally, emotionally & spiritually. This requires thinking out of the box to happen for some, if not all. For my son, we didn’t just have to “think” outside of the box, we actually had to “move” out of our box to a completely new one!

    • BB says:

      Awesome! I am glad your child and family is doing well.I am truly sincere in saying so.

      A mom I know well just moved back to the crummy weather of Chicago after moving to the better weather of Arizona because she thought her son and her would fare better there with all his/her health issues and possibly break free of his autism dx too.

      But the move was the worst thing for him and her, he regressed and became sicker than he had ever been and she is in a tail spin of despair that she has failed him–again.

      I am only sharing this because I beat myself up daily for failing to help our family get better, to recover. and for not protecting us all from harm in the first place. SIGH

      It is so hard to ever truly be certain what has helped any person improve or recover from injuries/illness/disease.
      it is easy to understand what caused it though, and unfortunately what’s done is done, we do not get do overs in life, so we keep on keeping on and pray hard for a sign of what to do to help our families, our world to live the best life possible.

      Let us all pray that the world is truly a much better place in 2013–that love, peace, joy, forgiveness, and hope brings true recovery for all that suffer and struggle the world around.

  3. Professor says:

    Karen, I’ve never heard of the glycine protocol. Can you give a quick overview and what it’s good for? (Love learning new things.)

  4. Oh my goodness….I am sitting here in the epilepsy monitoring unit in Richmond reading this….at 3 am while my son is sleeping the nurses are going to try to take blood for cortisol levels…..and some other labs…..thanks for this timely post.

  5. Martina says:

    Thank you so much – I have been feeling like an alien in a biomed world! Our biomed doctor doesn’t know everything, I know my son (4yo autism, major dev. delay etc) far better than she does yet when I try and say that, I get negative reactions from other biomeders who are seeing great results. We are currently using Aperture Homeopathy which is different to the other types out there and seeing some deep down changes, so we’re happy to stick with that right now. It’s already made wonderful changes for my 16yo with Aspergers, which diet, supps, etc never did. Also seeing slow improvements in my 10yo and 7yo Aspies, as well as myself. All our kids are different, they got to this place in different ways (my son was not vaccinated for example) and we need to keep going and try different things, even if our “alternative” friends don’t agree.

  6. Theresa says:

    What is the name of the test used and what were the precursors to neurotransmitters that were tested for? My son is MTHFR deficient. You are so right. You need to look at the specific symptoms of the patient and not decide what to do solely based on their diagnosis. For many parents when they get the Autism diagnosis or any other diagnosis they’re told there is nothing you can do or they go along with the status quo and they don’t look any further for the root causes.

  7. Robyn says:

    We are lucky enough to have a DAN! who is also a naturopath, and training to be a MAPS. Its the best of all worlds. That being said, I still try other things, we do behavioral therapies, have been to see a shaman and will likely start homeopathy this year. Its all good in its own way. Every kid is so different though.

  8. Lisa says:

    Thanks–I really needed this today. I will soldier on!

  9. Ousa says:

    This could NOT have come at a better time! My friend and I were just discussing this very thing, as we are both leaving behind biomedical in search of something new. I will keep looking outside the boxes.

    • Cupcake TMR says:

      Ousa – Homeopathy was wonderful for us for a while, but we stalled out there as well. We are really seeing some great benefits from a local ND that has no Autism experience. She’s been wonderful for us. I’m sure you’ll find the next thing, whether it’s therapy, a protocol or just a break away from everything (which we’ve done as well). Good luck!

  10. Holly says:

    Cupcake–Thanks for this post. Our son, who is 11 1/2, is a “non-responder” as well. We have been and tried everything. I jump around a lot too, but I give it 6-12 months, and then move on. I do have a question. You know, it’s not even really a question. It’s just a comment. It seems like nearly every post I read from TMR still describe kids who regressed but along the way, there was some progress made. It seems like the kids were medically stuck and then with patience, time, and chipping away–positives were noticed. Not to say there still are not problems. But where are the moms (and dads) that are trying and doing everything, but literally, their child is so stuck and it is hard to find progress in anything, even small. Is that just indicative that I am stuck in my own box? I don’t think so. I think it means that, for whatever reason, he is one of the kids that we have not been able to help yet. And…I feel like we have tried everything. We have done everything. And now…puberty is upon us and it.is.no.fun. We removed casein, gluten, soy…no monumental changes and I’m not even sure we should stay on that route even though it’s been 10 years of GF/CF/SF. I mean, things could always get WORSE if he was not GF/CF/SF. We’ve tested and treated neurotransmitters. We’ve spent my retirement and savings. We still have a child who is so so affected with no leisure skills or self-help skills. I am not sure what else to do. I’m not giving up, that’s not what I’m saying. There just has to be another mom out there who is 10+ years into this, still trying so hard, not giving up…but not seeing progress. It is just hard. You all know that. I just have not met in person any moms who have tried so much and done so much and loved so much…and still have a son so affected. It’s not that misery loves company…I just want him to feel better. And…I want to know what else I’m missing. If I truly am in my own box, what else haven’t I tried that would help him.

    • Julie L. says:

      I just wanted to send you hugs. I think there are probably a lot of kids like yours. I have a friend with an adult daughter with autism and down syndrome. She was the one who taught a more well known autism doc that the dual diagnosis can in fact happen. She has done so much for her child, yet most things have not worked. She has been in the thick of things for twenty plus years. I myself have a dually dx ‘dchild, but she has fared better than my friend’s child. She is not a “wow” child though. She is a slow and gradual kid a d honestly I do ‘t know if something has worked or if something just clicked finally. I think that maybe there is something that would work but that maybe ithasn’t been conceived of yet. I want to send you some hugs and send up prayers for a aha or a new treatment to comee up.

    • Cupcake TMR says:

      Holly – There’s still so much we haven’t done. Chelation, acupuncture (using magnets instead of needles), Cranial Sacral, Son-Rise, Feldenkrais, GAPS diet, Feingold…there’s just a vast amount of stuff out there. Some work, some don’t, some kind of work…it’s so hard to know. We just soldier on and figure it out as we go don’t we? Let us know what you’ve done and maybe someone will be able to suggest something that is new to you.

      • Holly says:

        Cupcake, We are going to try Cutler protocol again with small small small doses of ALA. We did it in June, saw some nice small things (he said Dad) for about 3 weeks, then I upped the dose, had an ugly yeast flare up for a couple of months and eventually had to stop it. Then aggression started and we had a huge, gigantic mess. Just because I thought I could up the ALA (even though I upped it SUCH a small amount)?? Who knows why everything happened. Anyhow, that is where I think we should be. I am hoping this time the incredibly low and incredibly slow method is more helpful, since we did some small things in the start. All, thanks for your words.

    • Em says:

      Holly,
      a lot of parents with non responders have tried MMS and have seen amazing progress. You will find tons of websites bashing it as bleach but if you are a thinker and you really look into the chemistry of MMS – IT IS NOT BLEACH. It has been used by many, many, people who swear by it for healing. Every parent must of course make their own decision about whether this is something that can help them, but I have used it myself and would say if you are interested, please see Kerri Rivera’s presentation and at least consider trying it on yourself first before ruling it out. It’s a tough protocol but clearly you would be able to handle it. http://mmsautism.org/index.php/Menu/mms-master-mineral-solution.html

    • BB says:

      I feel your pain and frustration for it is mine too.My kids are 181/2, almost 16, 131/2.I am 53, my husband is 62. We are all worse than we ever were and we have tried most everything too.SUCKS!
      I find it almost impossible to read about hopeful treatments without feeling cynical, meh.

      I get very anxious and start thinking that I have screwed up big time and blew it-again! what have I done wrong? Why can’t we get better?

      So, I soldier on and continue seeking, BUT now, I am waiting.
      I now will wait until I am 99.99% convinced that something truly deserves my attention for our family specifically to consider, and possibly try.

      We have been harmed/made worse from what others have claimed was miraculous for them/their whole family.
      I have wasted everything we have, and nothing to show for it, other than we are worse off, and in every way possible.
      We are all sicker and more compromised, and now I am just plain afraid of what might happen today and in the near and far future.

      I personally know people who have had autism and other horrible disease/illness and they did NOTHING and are much better, some near 100% better! Huh? WTF !

      I often think i should not have done most of what we did.Maybe we would have just gotten better by allowing NATURE/GOD to correct the errors/damage.

      Maybe when people think they found a magic bullet, it might have been/be an improvement that was on it’s way on it’s own.
      Like how Polio actually died off before the vax kept it going forever in different forms too. Hmmm.

      How do I recover my family?
      I DON’T KNOW!
      NOBODY KNOWS! Not really.If they did, we would not be having this discussion at all.No offense meant, just the facts mam.

    • BB says:

      My husband is 52, not 62,Oh snap!

  11. Laura Cox says:

    Would you mind telling me who your Naturopath is? Or, if not, at least tell me the specific test she ran. I cannot get anyone to run cortisol tests on my son or me. We seem to have very similar biomedical makeups. Both hypothyroid, both MTHFR mutation, and more. He has autoantibodies to folate and Leucovorin has been amazing for him. I have started 5MTHF on the advice of my physician.

    Thanks! I love TMR!!

    • Robotrachel says:

      I wanted to chime in with the same request. My son has responded extremely well to MB12 injections, but also has the MTHFR mutations (as do I, incidentally) and I’d love to know if the new protocol involved more than 5MTHF and who the naturapath is.

    • Cupcake TMR says:

      Our ND is in Wisconsin. I’d be happy to refer you if you are nearby as she isn’t comfortable doing long distance appointments. The test we did was a NeuroAdrenal Expanded panel. The lab was Pharmasan, but the company that has the test kit is NeuroScience Inc. http://www.neuroscienceinc.com. We are using their supplements suggested by the lab results and the ND. She omitted one of the suggested supplements thinking he really doesn’t need it and we’ve seen nothing but great results. He’s calmer, can sleep better, doesn’t seem to be nearly as anxious and is almost back to his laid back self. His sensory system is better and actually danced last night. Something that he would have NEVER done before.

      • Laura Cox says:

        I am in Texas, so I will try to find an ND here and ask for the test you mentioned. My son has (luckily!) been an excellent responder and is very high functioning – even almost neurotypical, with just some mild autism/asperger type symptoms remaining. The other big hurdle is health, as he still has poorly controlled asthma ans mito dysfunction that we have to deal with. You are so very right that thinking outside the box is key to our children. Thank you!

  12. Karen says:

    It’s true that even the best doctors are not all-knowing. Our wonderful DAN! doctor, who was especially fond of high dose vitamin C, missed some things too, although he was always willing to try things that I suggesed because he trusted my knowledge and intuition. I had learned of the glycine protocol, used in conjunction with chelation, from another mom and it was very effective. I have also gained insight into my son’s condition while battling my own autoimmune thyroid disease. Ironically, I have a neurotransmitter test kit sitting on my dining room table…something I requested from our new DAN! doctor. I think I’ll get moving on that – so glad I read this post!

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