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.

Making sense of food allergy tests

A few months back I wrote about a food allergy panel that our doctor ordered to check my son for food allergies. I really should have asked a lot more questions before agreeing to spent nearly $300 for this testing. It’s expensive and poking your sensory kids finger for blood is a horrible experience for all.

In any case we trusted that the doctor had researched the validity of this test. I should have researched it.  Recalling that my son’s results indicated he had elevated IgG results to several foods.We were told he needed to be off these foods for a period of time to help his body’s immune response calm down.

Four months later, with no improvement, I compared notes with another parent that also reported no change in symptoms/behavior when removing foods based on this same test. This parent ran a follow-up test nearly 6 months into the diet. The results made me questions all of it when I looked at the original and the follow-up.

So what is an IgG?  It’s a “memory” antibody and from what I read IgG antibodies signal past exposure to a food antigen, not allergy to it.  What? Wait….past exposure not allergy?

Of course he was exposes to eggs, whey and gluten in the past and regularly prior to any diet. He was actually already gluten free for a good 5 months before this test was done.

The other child’s follow-up testing showed that the elevated antibodies to those original foods went down which is what you’d expect if you weren’t eating them for 6 months. What we did not expect was there are now elevated antibodies to some of the foods the child has been eating to replace the ones he couldn’t have. So now instead of having elevated IgG to milk, he has it to soy because his cow milk was replaced with soy milk.

So we both looked at each and thought…so does it matter what he eats or are these antibodies just going to go up and down depending on what you eat?

That made me think, wait a minute. How valid is this test?

I am having a hard time finding valid scientific research that demonstrates that elevated IgG to foods actually indicates a food intolerance when the child has no food allergy symptoms to begin with.

Sources:

Dear Plebotomists and nurses….

We had labs drawn today. Every time we do I see a problem that is facing most of us with older children who might be either on the spectrum, developmentally delayed or have sensory issues that interfere with their response to medical and dental treatment. (trust me, sensory kids are terrible when it comes to dental or medical things and you can’t really blame the. They feel everything a hundreds times more than we do)

For my child blood work is rough. It elicits nightmares days before it is going to be done. Unfortunately this all comes from a bad experience in a hospital ER when my son was young. I’ve been told by some lab techs that they hear this story all too often and it doesn’t have to happen with the right training to work with children. I agree because it’s left him with a life long fear of needles.

I do tell each tech ahead of time that my son has anxiety with blood draws. Sometimes they listen to me and sometimes like the least time, they say stupid things like “you’re a big boy, there isn’t any need for this” while my child is hyperventilating. Then I must step in and talk to him and calm him down.  Anxiety is anxiety folks regardless of how “big” one is, otherwise adults wouldn’t get it. Once you have been traumatized by something….fear is a normal expectation.

So what I wish to convey to those in the this field or the medical community is not to judge what a person can handle based on their size or age. Don’t assume. I’m there with him for a good reason during this process. He might look like he’s nearly an adult, but that doesn’t mean he doesn’t have a valid terrifying fear about the experience.

Thankfully, I can get him through blood draws but you must let me do that because I know him better than you do. I know what works. I  talk to him and distract him with an in-depth conversation about something he has an interest in. Distraction is your friend on this one!

What does help:

  • Distractions! Please talk about anything but needles and blood work
  • Make it a point NOT to show him all tubes and the needle unless he asks
  • Please go step by step verbally and tell him what you are doing before you do it and leave out terror words like “poke”, “stab”, “pain”
  • Keep the tourniquet on the LEAST amount of time you have too, this is a very disturbing pain sensation for sensory kids. He says it’s worse than the needle stick.
  • Use a butterfly needle, it hurts less because it’s not moving around when you change tubes.
  • Please don’t assume or judge when a 14-year-old (or older) needs mom in the room. Trust me, you want me there. I know how to calm him down.

None of our jobs are easy and it is hard for medical personnel to know our kids have these issues when they might otherwise look “OK” until they are in the blood draw chair.  Labs could help by keeping their ped specialized techs in the same locations instead of rotating techs. A trust of sorts get build when you have the same lab tech each time. You know what to expect!

We’ve had some great and very patient labs techs, but we don’t always get the same one. This time was not the best experience for him because he had a different tech and she put the tourniquet on and then says “I’ll be right back” and runs out of the room. Then I’m left with a panicking child that is losing control because it’s hurting a LOT.  Then he’s all worked up and we haven’t even done the puncture yet or collected the blood.