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.

What…he’s wearing Jeans?

          Wikipedia

It has been literally years since my child could wear anything but track pants or sweats. The last time he wore jeans he was less than 2 years old. And even then, wearing clothing was limited and eventually, he just didn’t wear much but a t-shirt and diaper.

His sensory became so bad that he did not wear underwear, socks, jeans, cargo pants, dress pants…well anything really unless it cotton knit and tag free.

This week we took him shopping  because he asked about getting regular pants.  He wanted to try jeans and cargo pants again. Past attempts were unsuccessful and just too “scratchy and rough” feeling for him. So..he’s lived in track pants since he was 2.

He picked out several pairs of jeans and cargos and tried them on yesterday. He said they felt find and comfortable and he wanted them.

He has been wearing his new jeans all day today as if he’s always worn them.

As I watch him running through the house in his jeans, sneakers and sweatshirt…..I have to look twice. I am not used to seeing him in jeans.

But for us it’s an amazing milestone moment in our biomed journey. We have finally over come severe sensory dysfunction enough to wear normal clothing!

Sensory Triggers and Diet

Sensory Triggers and Diet

We’ve noticed some sensory symptoms have flared up again and the only coincidence we can link this too is a change in diet. It’s summer and that means going out for a burger and fries at the burger stand. It’s a summer tradition but before we realized it slowly the sound sensitivity and reactivity to paper has crept back in.

It is nowhere near as bad as it was prior to it going away for the first time ever but clearly it’s there in a smaller capacity but when I have a child complaining that a crayon is too loud when he writes with it, I know something is up!

This led me to thinking about what if anything we were doing differently in the past two months. Our schedule and our eating has been off kilter with family from out-of-town staying with us. During that time we had taken them out to eat at several popular summer time places. Not realizing of course that my son being gluten-free, was only ordering french fries at those place because they offered a designated fryer, if they did not offer gluten-free bread for a hamburger or gluten-free chicken.

He has stopped ordering french fries since going gluten-free last year. He was eating only rice or broccoli with a hamburger. Something like that. So when he went gluten-free, the fries also went away. And now they were back, and this was the only food that was reintroduced.

When I began troubleshooting to figure out what was going on, I remembered an article I was sent some time back pointing out the difference in ingredients between french fries make in Europe and the U.S. The primary problem was that in the U.S they are fried in GMO soy/corn oil which contains a chemical anti-foaming agent known as dimethylpolysiloxane.  So basically, silicone derived caulk compound some of us know as “silly putty”. And apparently “beef flavor” that may or may not contain gluten.

If restaurants can make french fries in Europe without GMO oil that contains dimethylpolysiloxane, then it’s certainly possible.  Silly Putty in Food

In fact McDonald’s used tallow until 2003 to cook their french fries! Until of course the “trans fat” attack began and pushed restaurants to switch to vegetable oils. The problem with this is that they are usually hydrogenated GMO corn and soy oil which contain plastic to reduce foaming. I’ve also read a fair bit that implicates vegetable oil in heart disease and health problems, not animal fats which would explain why obesity and heart disease have not declined when the nation switched to vegetable oils. Plus what if this oil does contain gluten? How is a designated fryer any good? Well, it’s not.

The claim is that this additive in the fryer oil is safe to eat this in small amounts but seriously would you toss a bit of silly putting into your next casserole?

I do not know what effect this chemical could have on the nervous system but I suspect it does have an effect.

I have since made organic fries at home in the oven which did not produce sensory flares. I have also made fries myself cooked in lard or tallow that I made. Still no sensory.

We have removed this exposure from his diet. I cannot verify if it’s the gluten in fryer oil or the chemical….either way we are steering clear of commercially prepared fries.