It’s been a month since Andy left us…..

My blog has been quiet for just over a month in honor of Andy Cutler.  Partly because I wanted to dedicate that entire month to him by leaving my post honoring him front and center but also because I’m just still reeling from this loss.

During the month of August we have been struggling with sleep issues that stem back a good year with my son. He gets to sleep, albeit late but then he was waking up every night around 2am and not getting back to sleep until nearly 4am. This was reeking havoc on our entire day because he was just too tired during the day to get much done.

I was too tired from being up late with him trying to get him to sleep too so my troubleshooting was clouded. After talking with a friend she suggested I get aggressive with adrenal support. So I doubled his current dose and he did begin to sleep at night. We had a few wakings after that but it’s settled down mostly. We also added in flower essences for good measure because by this time he was anxious about getting to and staying asleep.

I’m now regrouping myself so we can get back to rounds and whatever else we need to do. We’ve finished his antiviral protocol and his low dose naltrexone treatment. No more thyroid antibodies for now. We see the doc with fresh labs in October so it seems like we have made some progress on that front.

We are working in bits on his sensory and I’ll post about that shortly and let you now where we are now. It’s been hard this past month because I’ve just not felt like I could write anything at all, let alone a post. I guess that’s part of grieving but I know Andy would want us to pick up the pieces and carry on.

So carry on we will!

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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