Jake's Journey with Apraxia

And the Friends We Met Along the Way

In the spring of this year, we tried the colostrum our integrative doctor had recommended, but Jake developed allergy symptoms. I decided to take him off of it. My husband and I also voted no to Singulair. We decided to keep doing what we’re doing as it appears to slowly, but surely, be working.

Getting a second opinion from our allergist as well as performing additional allergy testing made me feel more at ease. Also, hearing two professional opinions steering me to reintroduce foods gave me a little more confidence.

Deep down I’m just fearful … and I feel the same way about apraxia. I fear regression. I fear safe foods and safe words here one day and gone the next. It is the life I have lived for five years now and I’ve been burned so many times.

Food Allergies – Positive or Negative?

1.) Fish/Shellfish: I did not test this because the fish reaction from the skin prick test last year was so severe, I swore not to do it again until middle school. I am going to assume Jake still has a severe fish allergy.

FISH reaction! OUCH!!!

FISH reaction 2013! OUCH!!!

2.) Peanut: Mild-Moderate Allergy. Jake is to remain peanut-free, but the allergist said his allergy is not severe enough to request that his class or lunch table be nut-free. He used to get hives when he sat next to someone eating peanut butter, so this is a HUGE improvement.

3.) Tree Nuts: When Jake was three he was allergic to almonds and last year, that was replaced with a mild brazil nut allergy. I did not do any testing this year for tree nuts. The vast majority of tree nuts are processed in a peanut facility; it is a non-issue for us.

4.) Egg: Negative! I am going to add a small amount of egg products back in 2015. I have thought this allergy was gone in the past and then Jake got hives and diarrhea when he had a belgium waffle with 2 eggs in it.

5.) Dairy: Negative! I am not going to add dairy back until 2015 and when I do, I will follow Elaine Gottschall’s approach that she recommends with the Specific Carbohydrate Diet (SCD). I have given Jake a bit of ice cream and he had no reaction. But I gave him a spoonful of Mexican shredded five-cheese and his gas was off the charts bad. Wheezing and itchiness are other things I am watching out for.

Jake never reacted anaphylactically to dairy and this began as an intolerance that grew into a full-blown IgE allergy. I believe dairy was the cause of the severe eczema and mild asthma he used to have because once I removed it from his diet, both dramatically cleared up.

6.) Pork: Negative! I have been adding back small amounts of pork for the past two months. Zero reaction.

7.) Pineapple: Negative! The last time Jake had a few bites of pineapple, it was like his stomach exploded … the worst, most out of control vomiting I’ve ever seen. I won’t be slicing up a pineapple any time soon.

8.) Gluten: The skin prick test has always came back negative for gluten, but the ALCAT we had done two years ago showed that Jake had an intolerance to it. He is going to remain gluten-free for now because I still believe in the gut-brain connection and the huge role it played in Jake’s recovery of apraxia, etc. The ALCAT is controversial for its accuracy, but I witnessed improvement right before my eyes when I removed gluten and dairy and added supplements.

The Rest of the Plan

Jake has been on supplements for almost two years now. Just recently, I have bumped all supplements down to every other day and I am just giving him half of the B vitamin dosage. My goal is to continue to wean him off. Jake is currently taking the following:

  • B vitamins (from compounding pharmacy)
  • CoQ10 (from compounding pharmacy)
  • Metagenics Glutamine (1/4 teas.)
  • Floraboost probiotic (1 scoop)

Acupuncture, which I believe is great for lowering inflammation, will continue to be part of our treatment regime on an as-needed basis; our last treatment was in June.

Despite the fact that our allergist pooh-poohed the gut inflammation theory, I still wholeheartedly believe in it. There are many things in this process that I change my stance on every day, but inflammation is not one of them.

Overall, the real quest becomes challenging the immune system to the point that it becomes stronger without causing it to over-react. I love the analogy that Jessica, our acupuncturist, presented to me … You want to work out the immune system like you work out the body when you exercise. Challenge is good and makes your body stronger, but too much can cause it to break down. Once your body meets the challenge, it becomes stronger and it can do more the next go around.

Tune in on Wednesday for the last segment of the allergy series.

2 thoughts on “Tiptoeing Out of the Bubble – Part 3 of the Allergy Series

  1. naomi says:

    It’s great that Jake’s allergy is getting better! It was interesting to see the 2 different interpretations from the test results. It’s always to good to get 2nd, 3rd opinions, but I’m with you. I do believe in inflammation as well.

    How was his seasonal allergy this spring? I’m curious if he still gets allergy from ragweed this fall. Please keep us posted.

    Aaron had an appointment with Dr.Bhatia last week, and I thought about you and Jake. Aaron’s progress is slow, but he is getting better slowly but surely. And yes, I know exactly how you feel about regression, so, slow and steady is a good thing:)

    1. tstarmom says:

      Hi Naomi! Thanks for checking in. I’ve been wondering how you are doing. Jake typically gets allergic in the Fall. However, he has never formally been tested for ragweed and I started thinking that he’s had questionable food/supplements that were introduced the past 2 falls. In 2012 – Vitamin E that had almond oil in it and in 2013 – eggs. With both he ended up having more severe symptoms when I upped the amount. I figured out both of these allergies around November and stopped giving it to him – about the same time ragweed gets out of here. He’s never been allergic in the spring when most folks here are. He definitely is allergic to grass as that was verified on a skin prick test and was the source of the eczema that stayed on his feet for so long. No more running through the grass in bare feet for my little guy. Look out in your email. I am going to shoot you an email about a question I have. 🙂

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