Jake's Journey with Apraxia

And the Friends We Met Along the Way

I have a hundred things going through my mind.

Even though my son is in the first grade, reading on a second grade level, and speaking beautiful, precious words, that little beast called apraxia continues to haunt us.

The last time I blogged, I shared the latest piece of Jake’s puzzle: histamine intolerance. I was also hopeful at that time I could add gluten and casein back into his diet.

In the fall, I tested casein and here’s what happened:

  • chronic stuffy nose that progressed into a cold with fever two times in one month (Jake never gets sick. Ever.)
  • wetting pants during the day
  • chewing on shirt collar and sleeves
  • hanging upside down on couch while watching TV or playing with electronic device

I tried to ignore these things, hoped they would go away, but then one day when he was coming down with the second cold and running a low-grade fever, he did something really strange.

He was sitting on the couch watching TV and all of a sudden, he started laughing hysterically. Oh good, he must be feeling better, I thought.

But then it didn’t slow down. Wild, hysterical laughter.

There was a commercial on … but it wasn’t funny.

“Jake, are you okay?” I asked. “What’s so funny?”

He  didn’t look at me, didn’t answer. Still, in a weird, funny trance.

He got up, staggered into the bathroom, pulled down his pants, and peed all over the place. On the walls, the toilet seat, out of control.

And the laughing didn’t pause for even a second.

“Jake! Jake! Are you okay?” I asked, grabbing his arm, shaking him.

Our eyes finally met and the laughing stopped just as quickly as it started. “Why were you laughing like that?” I asked.

He shrugged, gave me a confused look. “I was laughing?”

“Uh yes, you were,” I said. “Just now. Was something funny on TV?”

“I don’t know.” He pulled up his pants and walked out of the bathroom. With absolutely no recollection of what had just happened.

At that moment, I knew.

Even though I called the pediatrician and she got a kick out of this story and said he must have been sleep-walking. (At 3:00 in the afternoon with his eyes open).

I knew right then and there … dairy affects Jake’s brain and body in a negative way. And that experience scared me to death.

At that point, he’d been having 1/2 to 1 mozzarella cheese stick per day for about three weeks. That’s it. But just enough time for it to build up in his system. Even though his skin prick and blood test for dairy was negative last year.

He hasn’t had a drop of dairy since. And other than occasionally chewing on his collar, 100 percent of those symptoms went away.

Because of this experience coupled with the fact that he is doing excellent from a speech and academic perspective, I decided not to test gluten.

So, what in the heck am I supposed to do with this?

That’s why there’s hundred things going through my mind.

I believe my son has a three-pronged problem:

  1. IgE allergies to fish, peanut, and possibly egg
  2. histamine intolerance: a sensitivity to foods high in histamine that causes asthma, eczema, and moodiness (crying over every little thing).
  3. gluten and casein sensitivity: causes cognitive, speech, and sensory problems.

#1 is acknowledged and proven by our allergist.

#2 is acknowledged by a nutritionist in Canada who trained under Dr. Janice Joneja. (Histamine intolerance is a condition primarily diagnosed in Germany, Austria, and Canada and there are no “official” tests that provide 100% accurate results. An elimination diet is recommended where histamines are taken out of the diet and added back to see what the result is.)

#3 was suggested by our integrative medical doctor when Jake was four, but due to her busy schedule and poor customer service, I do not feel comfortable consulting with her moving forward.

Many people ask me: If you know what the problem is, if your child is symptom-free when you’re living in your crazy, healthy food bubble, why do you want (or need) an “official” diagnosis recognized by the general medical community?

Here’s why:

  • He is getting older each and every day; his future matters to me!
  • What “Mama says” doesn’t always fly as kids get older.
  • I don’t want 100% of the responsibility for diagnosing my child. I want help from a professional.
  • I want to make sure it is the best choice to keep gluten, casein, histamines, fish, eggs, and nuts out of this kid’s diet! What if keeping sensitivities out of his diet only makes his body become more intolerant of them in the future?
  • Certain meds contain his allergens/sensitivities and in order for him to have a safe medical/dental future, we must have an accurate diagnosis.

All of these things are screaming at me right now because Jake has two cavities that need filling … the dentist appointment I’ve cancelled twice already. The numbing med and the filling material terrify me. After all, this is a child who can’t even eat half of a freaking cheese stick and one that reacts to countless chemicals!

We need someone to back us. I need someone to acknowledge that the histamine intolerance and gluten and casein sensitivity are real issues. One week from today I have a consultation with Jake’s allergist. So cross your fingers he will help us.

I leave you with this video by Dr. Claudia Morris at Autism Canada in 2014. Syndrome of allergy, apraxia and malabsorption (SAAM) is the condition I suspect Jake has. It just has to be proven and dollars for clinical trials have to be available. It also looks like Dr. Morris is working on a new supplement for apraxia.

I am frustrated with the lack of official “proof” for this condition, but grateful that the building blocks at least exist. I also never lose sight of the fact that my child is speaking and out of speech therapy when so many are not. We all have our battles, this just happens to be mine.

Thoughts and comments are welcomed.

 

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One thought on “Apraxia, the Gluten Free Casein Free Diet, and What Happened When I Added Casein Back

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