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.

Parasites..it’s spring cleaning time

We are on a parasite cleanse this month as well. We began four days before the full moon and will continue until four days after the next full moon.

Parasite cleansing is one of the things I talk about in my book because it’s so often overlooked in relation to symptoms.  Sometimes you hear people say things like “wow, it must be a full moon” as an explanation for bad behavior, hyperactivity or other behavioral changes that occur occasionally. However, sometimes there really is a connection because parasite infection and activity does cause behavioral changes.

Other times they can’t figure out why their children are so off certain times and not others. I often have reports of nightmares, fecal smearing, and other unusual symptoms that resolve with parasite kills.

In addition to the chapter in my book, Humaworm’s website has a long list of symptoms that can help with determining if you might have this issue. Generally though, if you have never done a parasite cleanse….well, it’s highly suspect you have them then.  It’s a thought most people don’t want to think about but it’s actually been a part of humanity since forever. Castor oil used to be given to children for the very reason of killing parasites.  Our pets get parasites which is why the vet tests and treated yearly…no reason why humans would be any different.

We did actually have some interesting results from our original parasite cleanses. You can check out our past experiences with parasite cleansing here:

These days it’s more of an yearly maintenance for us but the herbs are also beneficial at killing yeast and some bacteria.  (Just to note that pregnant women and children under 1 should not do a parasite cleanse.)


Disclaimer: *I receive no compensation from Humaworm.com. I just love the product. However if they wanted to send me freebies..I’d welcome them! 🙂

Low Dose Naltrexone

We began at 1 mg of low dose naltrexone at bedtime as per the doctor’s instructions in March. Generally the starting dose is higher but she wants to eliminate/reduce any side effects if possible. From what I read there are usually few side effects and they usually subside in the first week.

The primary symptoms usually reported are sleep disturbances which can be insomnia or vivid dreams.

His first night at 1 mg, he did report bad dreams and he wasn’t too happy about it. The next night I only gave half of a milligram instead. That seemed to eliminate the bad dreams but he is having trouble getting to sleep. He either up late or waking up in the middle of the night.

After 2 weeks I increased the dose to 1 mg as per the doctor. So nightmares are back and he’s not happy at all about that. Who would be? I talked to the doctor again to clarify how long and if that will go away. She suggested we move dosing to daytime which would entirely eliminated the issue.

That did eliminate the issue thankfully. Today we moved up to 1.5 mg. Our target dose is 3.5mg. In three months blood work will be done to see if the viral issue is gone.

We are also using immune supporting herbs and antiviral herbs daily.

I am adding lysine now that I found one that dissolves in juice easily.  Ironically on all these antivirals and there is no yeast overgrowth so that’s a win I owe to chelation.

I was going to also add in olive leaf but I cannot gag down the olive leaf tincture I bought…so that’s not going to work. We have not started niacinamide yet but it’s on my radar because of its usefulness in autoimmunity but I do have him on selenium daily.

I will post when I have more conclusive results from doing the antiviral/immune regulation treatment. I suspect I won’t know more until summer when we see his blood work. To date, sensory is unchanged but hopefully this will help his immune system and thyroid function.

Viruses? Still?