Jake's Journey with Apraxia

“It’s complicated.” That’s what I’ve started replying when people ask, “What’s Jake allergic to?” I usually then follow-up with, “Technically he’s allergic to fish and peanut, but there’s a lot more to his situation.”

Regarding food, we have experienced it all. IgE anaphylactic-type allergies, intolerances, and we have even been three-year participants in the Great Gluten-Free Casein-Free (GFCF) Debate. Things were going along great in our regimented bubble free of six food groups (fish/shellfish, peanut/tree nut, pork, egg, dairy, gluten) until the end of 2014 when minor allergy symptoms started popping up here and there … eczema, asthma, stuffy nose, red, itchy eyes, belly aches, and horrid gas. What?!? How can this be?

My first thought was that Jake’s diet is so limited that he’s eating the same foods repeatedly and is therefore, becoming intolerant to them. With this theory, came major mommy guilt. His allergy skin prick test last year showed that his IgE allergies had gone from seven to two and yet still, one year later, I hadn’t added any foods back out of fear … fear of false-negative test results, anaphylactic shock, change, learning disabilities, speech regression, uncertainty, and allergic reactions.

So. Much. Fear.

But now, in the wake of this new episode, a much worse feeling.

Suffocation.

I could not wrap my brain around taking any more food out of his diet.

I spent six months wracking my brain trying to figure out what was causing his symptoms. At the beginning of the summer, I revisited a condition called histamine intolerance that I first heard about two years ago. I asked our allergist about it last summer and although he admitted that “sure, that’s a possibility,” histamine intolerance is only a diagnosis that is given in Germany, Austria, the UK, and Canada. (1)

When I looked closer at the food list of typical culprits – those high in histamine and/or those that release histamine stored in mast cells – I was blown away. Many of these things were already out of Jake’s diet because of past allergic reactions: liver, vinegar, pineapple, most tomato products (organic ketchup and spaghetti sauce), processed, ready-to-eat food (Pop-Tarts), certain types of cheese, most hot dogs except for Hebrew National, beef/turkey jerky, and pumpkin. What was even more interesting was that the remainder of these foods – ketchup, chocolate, oranges, bananas, hot dogs, canned food, refrigerated leftovers, and food dyes – were now a HUGE part of his regular diet. (1)

Could histamine intolerance possibly be the answer to our six-month allergy epidemic?

As a test, in June I removed these foods from his diet and within 24 hours ALL of his symptoms were 100 percent gone. Gone! Overnight the broken skin on his heel literally fused back together! No more chronic stuffy nose at bedtime for the first time in his life! I waited a few weeks and tested a few primary suspects again, and yep, the minor symptoms returned.

Histamine is not just a bad guy that causes pesty allergy symptoms to develop. It has many positive roles as well and is believed to be involved in 23 physiological functions. I found it particularly fascinating that histamine is released as a neurotransmitter. (2) According to Brain Facts, “Whether it is learning a new fact or deciding which way to move, tasks executed by our brains rely on the smooth and efficient release of neurotransmitters, chemicals that send messages from one brain cell to another.”

Part of ASHA’s definition of childhood apraxia of speech is, “The brain has problems planning to move the body parts needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.”

I also found it interesting that it is “suggested that histamine controls the mechanisms by which memories and learning are forgotten.” (2) Upon discovering this, I remembered the words that Jake’s apraxia specialist told me two years ago, “If you fix the memory, you fix the apraxia.”

And so I formed a hypothesis … an educated mommy guess. Could histamine intolerance also have played a role in his apraxia?

Is this why Jake was such an excellent responder to diet intervention? Remember, three months after he started a clean, unprocessed, GFCF diet, supplements, and Speech-EZ, he spoke his first words at 4.3 years old. He went from silent to testing out of apraxia a year later. And it wasn’t just the speech that improved, it was his entire demeanor. No more fidgeting – squirming around like he had ants in his pants – no more grueling hours of speech therapy with a brain that couldn’t grasp the challenge of communication.

I think his recovery was probably due to a combination of everything during that time, but I do wonder if taking out some of the big histamine players that I was unaware of at the time were enough to at least tilt the scales of recovery.

After reading everything I could get my hands on regarding this condition along with the dramatic improvement of Jake’s symptoms, I knew I must look into this further. I set out looking for someone to help me.

First, I found Dr. Theoharides, an expert out of Boston. I was particularly interested in his work because he is studying the effect of high-histamine levels on speech. He has videos and testimonials of children with autism speaking after their histamine load was lowered with NeuroProtek, a product made from the three flavonoids luteolin, quercetin, and rutin. I emailed him our story, but never got a response back.

Then, I contacted Dr. Joneja out of Canada. Although she is researching full-time and not taking on new clients, she recommend me to Wendy Busse, a dietician who assists people with allergies, intolerances, and specifically histamine intolerance.

One week later I was Skyping with Wendy. I learned more from her in our 1 hour and 45 minute appointment than I have in six years from pediatricians, allergists, and dermatologists. She created a plan for us to add foods back into Jake’s diet, while keeping histamine-rich foods out. So far we have successfully added back pork chops and mozzarella cheese with no side effects.

I am excited about this potential breakthrough.

I have always known Jake was more than “just” a food allergy kid because his reactions are so sporadic, extensive, and not just limited to food. Fortunately he does not have seasonal allergies, but he is hyper-sensitive to scents, cleaners, hygiene products, and the ocean.

Knowledge is power. I can cope with his condition, but I have to know what it is first. I have spent years feeling paranoid because his reactions are so random. So, imagine what it feels like to finally be able to connect the dots! Also, this discovery will hopefully allow Jake to eat more food in the long run. Yes, out of the gate we are taking a few more foods out, but at the same time, the foods that we are able to potentially add back in are huge.

Histamine intolerance is definitely tricky though. For example, Jake should be able to tolerate a majority of dairy products, but aged cheese and yogurt may cause problems. Something like a plum or peach may not cause symptoms if it is fresh off the vine, but as it ripens and the histamine level increases, it may evoke reactions. He may be able to eat a pork chop, but not pork sausage or bacon because of the way it is processed. He may be able to eat vanilla ice cream, but not chocolate or a popsicle made with dyes. He may be able to tolerate gluten, but things with a high yeast content may spark a reaction. And then, sometimes a food eaten by itself is fine, but eating two, three, or four histamine foods in a day might cause symptoms (bucket theory).

For us, histamine intolerance means that if Jake overloads on histamine foods, he may have asthma, belly issues, red/itchy eyes, and eczema. If he has one of these things – like chocolate or an orange – he just gets stuffy. Ketchup and banana have been the only foods that have made immediate, more problematic symptoms appear.

Despite the negatives of histamine intolerance, learning about it has been fascinating. I look forward to future research on the relationship of histamine with speech. It is also an interesting philosophy to me that people who have seasonal allergies may benefit from a reduced histamine diet during pollen/ragweed season and that the very med we take for allergies – antihistamines  – alter our DAO enzyme production. (3)

In conclusion, what IF histamine intolerance was Jake’s underlying problem all along? And what IF those allergy symptoms returned this year because the root cause was misdiagnosed this whole time?

My biggest prayer would be for the histamine intolerance to replace the gluten, casein, and pork intolerances, which were taken out due to our ALCAT results in 2012. I also pray that histamine intolerance is not a lifelong condition for him. Again, it is all reliant on the enzyme (DAO) I mentioned above, which can either replenish itself once histamine is out of the diet or is available via supplementation. I can handle the peanut and fish IgE allergies, but I do hope they become less severe. My biggest fear is that histamine intolerance, which often comes with other allergies, will be an addition to the gluten and casein intolerance. We can take it, but it will make my heart hurt. Only time will tell.

Right now, I am working on widening Jake’s diet and trying my best each day to focus on the positive. And there is much to be thankful for. As long as my boy is in his allergy-free bubble he is 100 percent awesome.

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Sources:

1. “What HIT Me? Living with Histamine Intolerance” by Genny Masterman, 2013. 
2. “Histamine,” Wikipedia. 
3. “DAO Enzymes and Histamine Intolerance,” by Dr. David Jockers, Natural News

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