Our Story

Our family got a FOOD wake-up call when my daughter was born early in 2009. Around 2 weeks of age she began screaming and crying and not sleeping. We were told it is “just colic” and she would outgrow it. So we waited and she screamed for a month longer, then they told us it was “reflux” and she would outgrow it, so we gave her some reflux medication and waited. Then we introduced food to her around 5-6 months and she continued to scream and not sleep, and we were told to try a different medicine and that maybe it was food allergies and she would outgrow it.

By 8-months old she was getting worse and not better and we asked to see a GI specialist. We were told allergies and reflux again and this time I was put on an elimination diet after more medication changes produced no results. This breastfeeding elimination diet began with removing milk, then eggs then soy from my diet. When I removed Soy, she stopped crying! Bingo…we thought! But as we kept a food journal we realized there was a lot more than just soy causing her discomfort. My diet, toward the end of nursing her, consisted of ground turkey, chicken, a few vegetables, a few fruits and oatmeal and rice.

She was diagnosed “failure to thrive” at 1 year old and had an endoscopy to check for GI disorders. Nothing was found (although 6 months later another doctor reread the slides and found eosinophilic gastritis, and allergic, inflammatory stomach condition) and we were advised to feed her an expanded diet and give her cow’s milk.  The first week we introduced cow’s milk at 15 months, she began banging her head on anything hard she could get her hands on, including the tile floor, and in a moment, we began to “lose” our little girl. We quickly stopped giving her milk and over the next 2 weeks, slowly she came out of what we now know was a neurologic regression.

Over the next year we attempted to expand her diet with little luck, some foods would “fly right through her” and others seemed to be ok. We had more regressions and developmentally (especially with speech) we had many  “2 steps forward and sometimes 3 steps back” moments. At 18 months, we sought evaluation from Early Child Intervention and qualified for OT services and more evaluations. Around this same time, our little gal started having severe neurologic reactions to household cleaners (nail polish remover fumes, windex, perfume, hairspray) which led us to a neurologist who did blood testing, which showed markers for mitochondrial disease (elevated lactic and pyruvic acids).

Here is a more in depth post about our Journey of a Thousand Miles.

It has been 2 years since I started this Blog and WOW what a journey it has been…. Lady A still continues to struggle with food and digestion and energy and sleep and irritability …. BUT she has GREAT times too (and some weeks they out-number the down days)~  Speech explosions that occurred after removing salicylates from her diet,  great days for a few hours at preschool, energy filled moments riding her bike, smiles that have replaced the blank expressionless stares and screaming, and days when mommy figures out a new recipe that she gets so excited to eat and LIKES!

God is good and he will carry us through.

After many more specialists appointments, it is still suspected that our little gal has mitochondrial disease  and we now have a team of doctors who is helping us on this very uncertain, winding path.   We are reminded by one of our physicians:

Matthew 11:25

“I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children.”


6 Responses to Our Story

  1. Joan Ablahani says:

    Hi Kristi, How is Lady A doing presently. THere are so many of us that are Multiple Chemical Sensitive who react to all of the fumes you listed above. I think of my own son as a baby who had extreme colic, acid reflux rashes and crazy hyper behavior. If its any consolation my boys are now 24 and 27. One has a great job and just got married. THe other is ready to graduate college. THey still have bad acid reflux which causes a cough and throat clearing. And they get frequent fungus rashes. It is all interconnected to their salicylate intolerance and possible gluten intolerance but they are still in denial. At least someday they will know what to avoid when it gets worse.
    Do you follow the Feingold diet with Lady A as far as avoiding artificial colors. I recently added 6 more chapters to my book”Salicylate Intolerance and the Healthier I Ate the Sicker I Got.” to include more about how Food intolerances and Artificial Colors affect childrens learning and behavior. I also have a section on MCS ( Multiple Chemical Sensitivity) and NCGS (non-celiac gluten sensitivity).

    Kristi, do you think that everyone who is SS and MCS has a touch of Mitochondrial Disease?

    On the back of my new business card I recommended 3 really good websites for people to check out: Feingold.org, Salicylatesensitivity.com and Babyfoodsteps.wordpress. Youre doing a great job., Joan

    • Marcia says:

      Joan, salicylates/phenols cause a block in the Krebs Cycle — causing the mito problems. That is until they can be both broken down properly by healthy gut bacteria (including SBO’s), and also detoxed properly by correcting the PST (sulfation) pathway, and also the glycination and glucuronidation pathways.

      Also I would highly recommend Vesper’s website on salicylate intolerance — much better than salicylatesensitivity.com (too many other food issues on that board). Her site is “Salicylate Central” or “salicylate.me”.

  2. Barbara Cianciulli says:

    I just found your blog. My 3 year old went the first 3 months of his life in pain and undergoing blood transfusions before we discovered that he is g6pd deficient. Since then, our diets have drastically changed – for the better, for ALL of us. I’m happy to have found your blog. God Bless your familly.

  3. Pingback: You Know Your Child Best. Period. End of Story. | Taking Baby{food}Steps…

  4. Ellyn(Lyn) says:

    Sounds like you are on the journey I entered 26 years ago. My son just went to be with The Lord last month. Despite dietary challenges and multi system problems he lived a full and active life as a mito-kid . At the end he developed endothelial mitochondrial dysfunction.

  5. Pingback: The Future Of Genetics- NCC Collaborator Article | Taking Baby{food}Steps…

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