I got schooled by an Occupational Therapist!

Catchy head line, right? It is also true. With as many books as I have read on sensory processing disorder, it isn’t a replacement for an education in occupational therapy or meeting with one.

We finally convinced my son he needs to see an OT (occupational therapist) for his sensory. I was gladly schooled (yes I know educated is the proper word)  by her and happy to learn some things I didn’t know about SPD.(sensory processing disorder)

In the past my son has had OT or what his school liked to call OT which looks nice on paper. Most of the time, either it wasn’t done properly which I’ll get to in a minute or they couldn’t address things because they “don’t interfere with school” or worse yet, things were simply not being done even though they were in the IEP. This happens more than you think, folks. Apparently the complete and total inability to look at, touch or use paper is somehow not relevant in a school setting?! Yeah, ok. So anyway…..

We spent over an hour with this therapist going over all sorts of questions about my son’s symptoms. What helps it? What makes it worse?, etc and so on. The conclusion is that he has a very significant sensory disorder.  I knew that but his other doctors have ignored this issue for years as if it’s normal for a child to refuse to be examined, or refuse sitting on the paper covered exam table, so it’s nice for someone to finally recognize, that yes, it’s bad.

What we learned are:

  • Sensory disorders usually start out fairly mild but when left untreated they become worse. This leads to a child being hyper-sensitive most of the time and that can cause anxiety, problems falling asleep and many other avoidance behaviors.
  • Sensory actually CAN fluctuate from day-to-day which is fairly normal. (Good I can stop driving myself mad trying to figure that one out! see my going mad post)
  • Prior sensory treatment if not done right either doesn’t work or makes it worse.
  • There is help, we can treat this and improve his quality of life! (Yay!)
  • The previous attempt at Wilbarger Protocol was done completely WRONG! (explains why it failed)
  • The sensory diet won’t help if not done properly.

I do want to elaborate on the Wilbarger Protocol problem we had, because I think it’s highly disturbing that so many people try to use this protocol on kids without the proper training. You really can cause more problems and a lot of misery for a child if it isn’t done properly. In fact if you’re doing this wrong, you WILL cause more over-stimulation of the wrong part of the sensory system.  This is what happened to us when school improperly implemented the program.

I did not know that school didn’t implement it correctly. All I knew was that my son got a lot worse pretty fast. He even wet the bed for the first time in his life! I had read enough about the protocol to know that what we were seeing was bad. I contacted school and reported these things and they had no answer for me as to why, so I revoked my permission for the protocol immediately. It was stopped that day.

Why did this happen?

Here is why:

I found out several people at school were taking turns doing the brushing every few hours because the regular OT wasn’t always there. I also learned that they were simply not doing the technique correctly either which means I had also been advised to do it WRONG!

How to avoid problems:

  • NEVER ever try to do Wilbarger on your own. Find a properly trained OT.
  • Find out where they got their training in Wilbarger. Should be from Wilbarger.
  • Find out who will be doing it, it should be the same person every time.
  • The best time is probably during a 2 week vacation when only one parent does all the brushing once properly instructed by the OT.

We should have asked who trained them. We should also have asked if the same person would be doing the brushing each time. We honestly should have not done it at all if the same person couldn’t do it every time, and that person wasn’t trained properly either. We simply didn’t know any better which is why I’m talking about it.  I’ve learned a lot since those early days but it’s now that I’ve discussed it with a private OT, not the school, that we are getting answers.

We go back in several weeks to lay out his treatment plan, which will probably include  Wilbarger done properly as well as a sensory diet that the OT will put together for him.

Stay tuned…….

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.

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.