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:
“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.”