My reflections on sensory…

Some days nothing can stop us! It’s going well. Other days like this one, I feel defeated that I have not been able to find relief for my son’s tactile defensiveness. It’s a puzzle that I keep going over in my head while thinking, “I have to be missing something”.

So I’ve decided to do more detective work and start putting together what we know and charting it to look for patterns. He has developed a rating scale for his sensory and each day I write down his rating on a calendar. I include notes regarding if he were home all day, went out, ate something/someplace that isn’t usual etc.

Maybe,….just maybe I’ll see a pattern.

The most perplexing is that some children have sensory and it’s just a constant thing each day. In his case, he has it every day but how bad it is changes from day-to-day.

What I’ve narrowed down is that he has had periods of time in the past where it was markedly better but that hasn’t been for a while. He says it is better when he’s at camp, which is actually way out in the country near nothing. He also finds it better when we go out of town. It’s not gone mind you, but just less severe.

The primary sensory issues are really just tactile in nature. He has a very sensitive head to the point where hair and face washing is extremely uncomfortable. He’s been able to get used to brushing his teeth but there is a lot of gagging surrounding that.

This doc we’ve been working with thought food allergies were behind it because he seems to have a heightened sensory system where he can smell, hear things other people don’t notice.  Bright lights bother him and so does the heat. Some of this is adrenal related in my opinion but anyway, that these were the reason the doc suggested food intolerance. However, four months off those foods…it’s not foods causing it. Plus we found out the food testing that was done was meaningless anyway.   (I detail that in this post)

I’ve been over the “mold” exposure theory, environmental allergies, etc and he just doesn’t have the symptoms for any of that.

The autoimmunity and viral issue….seems sensory would be improving then because he’s been on things to treat that since March and it’s almost June.

So the final though from the doc was to take him back to an occupational therapist for sensory disorders. It’s hard to get a 14-year-old to want to go to anymore therapy.   He’s been through so many of types of therapy already and he reached an age/point where he began refusing several years ago. But trust me it’s not off the table if they can actually help him but it won’t be easy to get compliance and find a properly trained therapist.

Going over my mental list of what I’ve tried:

  • chelation: yes, doing that, approaching 200 rounds.
  • antivirals: done it and  repeating it again now
  • antibacterial: done it, many times
  • antifungal: done it and he has no antibodies to yeast or symptoms at this point
  • antiparasitic: done it every year since he was like 5, no change
  • he has no gut issues so not thinking it’s dysbiosis
  • food allergy elimination diets: gluten free, dairy free, gluten/dairy/egg free diet
  • homeopathy: done it, did nothing for sensory
  • Wilbarger protocol: terrible experience for all including him, discontinued.
  • sensory diet: done it, doing it, but that doesn’t actually “fix” the issue, it’s more a coping mechanism. Which means the electric toothbrush, trampoline, weight blanket etc and so on.
  • primitive reflex integration/visual motor therapy

So I’m sort of at a crossroads because nothing we have done to date lets him wash his own head or face.

I don’t think he’s hardwired this way because if that were true, the condition would not change from day-to-day.  In our early days of chelation he had fluctuations with sensory and large improvements with it but we reached a point where I don’t see it improve anymore. Duly noting a DMSA/ALA round a few months back he did report it was worse so it’s possible some metals could still be a factor. But then again, he reports it’s worse some days and he isn’t on a round at all. It’s possible it wasn’t the round at all, and it was just one of his bad days.

Ahhh! So frustrating doing your own research because no one out there knows. Guess we will see how the journal log of symptoms goes.

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2 thoughts on “My reflections on sensory…

  1. Hi Jan, for what its worth my son also struggles with sensory issues who’s done 200 plus rounds of chelation. He does great with ALA alone, but as soon as we add DMSA his sensory issues are exacerbated. He has autoimmunity issues-type 1 diabetes and symptoms of PANDAS that we have to continually treat.

    • I met with an OT today and I plan to post about all of that shortly. Maybe it will help all of our kids. We are also addressing autoimmunity but for hypothyroidism instead of diabetes. I would suspect adding in the DMSA with your son becomes an issue because of it’s effects on absolute neutrophil counts. Those are needed to fight bacteria. If he were low in those to start with, using DMSA may make that issue worse. I know you have probably already researched that avenue but I thought I’d mention it. I suspect that might play into PANDAS as well since you need those neutrophils to fight bacteria. Just a few thoughts, may or may not apply. Take care, and thanks for sharing!

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