Her Story

After yesterday’s story about me, I feel like it’s senseable to share my daughter’s story.

Miss A was born after a daunting 44 hour labour. A week late, 5+ hours of pushing, a little help from my friends forceps and vacuum, she was my victory baby. She was my VBAC; my success; my proof to myself that I could do it. She was everything I could have dreamed she’d be. And she was a healthy 8 pounds 4 ounce bundle of beauty. She was bruised and bloody at birth, and I thought she was the most spectacular being in existence.

She stayed plump. Okay, I’ll be honest. She was downright huge. She was consistently in the 85% for weight. She was a breastfed, contented baby that seriously thrived in every sense of the word. And then, at 5 months, she got RSV. Looking back, I think that’s what triggered her celiac into full blown hell, but of course, that’s speculation. She changed after that and began being more fussy. I hadn’t been able to have any caffeine after she was born because the moment I took a sip, she’d be screaming after the next nursing, so I cut it out completely. But other than that, it was free reign for me on foods.

At 6 months, we tried solids. She had zero interest in any food and was fairly determined not to eat anything other than breastmilk. We tried again at 7, 8, 9 months and still she showed no consistent interest. She’d “eat” now and again, but never anything substantial. Around 9 months of age I took her to a naturopath and said that I was fairly convinced that she was reacting to dairy and wheat. He said that he thought her stomach was just immature.

At her one year appointment, when she was a hearty 22 pounds 7 ounces, her pediatrician also didn’t show much concern given her beefy stance. What *I* knew what that all that beefiness was from my calorie rich milk, and not from any sort of food. In fact, Miss A would spontaneously vomit after eating and we couldn’t link it to anything in specific. It didn’t happen all the time, but seemingly rather randomly.

When Miss A was 14 months, I was diagnosed as celiac, but by that time, she was living on a meager diet of breast milk, toast (wheat), cheese (dairy), yogurt (dairy), and crackers (wheat). Over the next while she stopped gaining weight. Completely. When I say that I literally mean that she flatlined on the growth chart. At 2 years, she was 22 pounds 7 ounces – the EXACT same weight she had been a year earlier.

Finally, after 16 nmonths of me saying something was wrong, others started to think it (my husband included, though he had come on board the “something is wrong” train before her 2 year appointment). She was labelled failure to thrive. She was doughy – had no muscle tone at all. She was skinny in comparison. She had no hair still. Her fingernails weren’t growing. She was lethargic and slept a lot. She’d run with the other kids then have to sit on a trusted adult to rest before being able to go again. Still through it all, she laughed, smiled a lot, and lit up any room she walked in to.

We started running tests. She had chest xrays (her heart and lungs were fine); she had a plethora of blood tests (some came back fine, some came back borderline); she went through 2 sweat tests to test for Cystic Fibrosis – both came back borderline positive so they ran genetic tests which confirmed she did NOT have CF. She had more blood tests. Nothing was pointing to anything but one thing was for sure – now everyone was worried. This was a very sick little girl.

I consulted another naturopath for guidance. At this point, we were dirt poor – not from medical expenses, but from me being a stay at home mom while my husband finished his phd. We couldn’t afford natural therapies but our naturopath was mindblowingly amazing. She charged us exactly what we would get back from the insurance company so we weren’t out of pocket. And strangers heard about our plight on a message board and sent us money to cover her tests. So test we did. A finger prick test that ran a gamut of food related sensitivities.

It came back glaringly obvious that little Miss A had some serious food issues. Gluten and dairy were out. Soy and eggs too. And garlic. So we cut it all out. It was extremely difficult given what she was currently eating, but we were determined. Nothing had worked so far, so really, what did we have to lose? Through it all, I kept nursing – we were fairly certain it was what was keeping Miss A from getting sicker given she was absorbing many of those nutrients.

After a month of being on a dairy-gluten-soy-egg-free diet, we went to get her weighed. Actually, my husband went. I couldn’t bring myself to go. And she gained weight. She gained about 6 ounces, but given she hadn’t gained in 14 months, this was mindblowing. I sobbed for a long time – Our hard work had paid off. She continued to gain slowly but steadily and now at 4, she’s just over 30 pounds.

We were sent to a pediatric GI who said that we were obviously extremely dedicated parents, and that while she couldn’t confirm this controversial test had provided some answers, she certainly couldn’t argue with the outcome. We were getting our little girl back – she was starting to grow and her energy level was picking up. The GI suggested we treat her as celiac and not bother to scope her – We readily agreed.

Since then, Miss A hasn’t eaten gluten. She has very minimal amounts of daiy – she can tolerate it more now, but anything over 2 pieces of cheese has her hurting. At 4, she already knows her own limits. We both avoid soy still, but she can now eat eggs (which I’m going to say has been VERY nice for baking). Her hair is growing, we have to cut her nails regularly, and though she’s still little, she’s not obviously tiny anymore. She’s happy, VERY feisty and amazing. And she’s her own little advocate telling everyone she can’t have wheat or gluten and asking if she’s not sure what something is.

What I learned from all of this? ALWAYS trust your gut instinct when it comes to your kids.


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