Amber's Story

I figure I should start by giving a slight history on us so that when I post things, they might make more sense. I'm going to start with Amber.

When Amber was born, she was the most laid back, easy-going calm baby I've ever seen. She rarely cried, was full of smiles and was very curious. At 5 months, she had a brutal case of RSV (a common respiratory virus) that started out of the blue and landed us at the hospital and doctor's offices.

At 6.5 months, I attempted solids with her. She had been breastfed exclusively up until that point but she seemed interested in solids. She hated them. She spit them out, or would have projectile vomit after eating certain solids. It was evident she wasn't ready for them, so we held off. We tried every few weeks or so, but generally, the reaction was the same. She became constipated and cranky whenever she ate. At that point, we noticed that when I had a lot of dairy, her skin would be redder and she would often get dry, flaky skin (like cradle cap) on her head. One time, I had a soy cupcake at a friend's party and Amber broke out in hives. (I'm allergic to soy but in a sensitive stomach way). I also suspected she reacted to wheat when I ate it.

We took her to an allergist who tested her for soy as the IeG results would show up with that one, but not to the dairy and wheat descriptions I was giving in terms of the reaction. We knew she wasn't showing anaphalactic signs to either, but with the hives, that qualified. She tested negative to soy. (A relief, but great source of confusion too).

Naturopaths and pediatricians all said that her stomach was immature and not ready. My gut told me otherwise, but I went with that. At 10.5 months, Amber officially started solids on a relatively daily basis. She never ate purees but finger foods were a favourite. At her 12 month doctors appointment she weight 22 pounds, 7 ounces (which is what she weighed around 10 months also).

Fast forward a year. Her hair had barely grown. Her fingernails rarely needed to be cut. Her skin was occasionally translucent but always extremely pale. The 18 month clothes she went into at 9 months still fit. When she wasn't in a diaper, her pants would fall down. She needed to rest often. She would run and laugh and have fun but then come to her dad or me to sit for a while to rest before going again. She almost never ate - food became an enemy to us. At her 2 year doctor's appointment, she weighed 22 pounds 7 ounces. The exact weight for one year previous plummetting her down to the 3rd percentile in weight. She was "doughy" meaning she had no muscle tone to her. Skin was loose on her body - you could pinch quite a bit of it on her tummy. If she ever said she was hungry, we were always prepared with food - if she was hungry, she NEEDED to eat.

Amber was, at 2 years of age, labelled failure to thrive. I was still nursing her at this point, and she was nursing upwards of 8-10 times a day - the same amount as a newborn. She nursed around the clock and I never had more than 3-4 hours of sleep in a row. My breastmilk was keeping her going. It was easy to digest and her easiest way of getting nutrients. By this point, I was 100% gluten free (I have celiac disease that got diagnosed when Amber was 13 months), mostly soy free as well. I ate quite a bit of dairy though and so did she.

Over the next 2 months, we went through a plethora of tests. A chest xray showed no abnormalities with her lungs and heart. Two sweat tests came back borderline positive for Cystic Fibrosis, but a genetic test done afterward showed 100% certainty that it was not CF. All her blood test came back negative or relatively normal - she was always on the low side for some levels (like iron), but not dangerously low. Everyone was perplexed, and we were downright scared.

What my gut had told me for over a year was becoming our reality - our little girl was sick, but with what?

We started feeding her extremely high fat foods - 18% cream was added to hot chocolate, butter was added to everything she ate.After about a month of this, she gained a few ounces, but not enough to make her better.

On a whim, we did a food sensitivity test (iGg) to 96 foods. Amber came back frighteningly sensitive to dairy, eggs, wheat/gluten, soy and garlic. We decided that given we had nothing to lose, we would go on an elimination diet. Within 2 weeks we had cut all of it out. Within a month, she had gained 1.5 more pounds to bring her up to 24 pounds, 6 ounces. This was the biggest weight gain we had seen in almost a year and a half. (And yes, I cried with joy). More importantly, we were noticing big changes within Amber - her bowel movements were actually "normal". Her cheeks started to pink up and her skin was no longer see-through. She didn't need to rest as often while playing. Overall, she was less cranky, too.

Her hair started to grow (she has some curls at the back of her head now and it has become much thicker) and I can't tell you how often I have to cut her nails now! It's almost annoying how fast they grow!! She also eats on a regular basis now and actually LIKES food!

Amber is now sitting at 25 pounds. She's in the 13th percentile - out of danger of dropping off the charts altogether. We tried introducing dairy and it was a nightmare. Her personality became aggressive, she didn't go for a BM for 2 days, and barely ate during that time either. Wheat seems to prove not much better for her - I'm pretty sure it pains her, but we're not 100% sure. She had wheat again today (her 2nd time since the beginning of January) so we'll see how she fares tomorrow.

I think she can tolerate soy lecithin, but not soy itself. And we have not yet tried eggs of any kind.

So there is the beginning of Amber's story. It will have some more to be added I'm sure this week as we see a pediatric GI for a follow-up to all of the testing she had done.

I write her story to tell you that it is possible to know your child and know that something is wrong - follow it through - you're the expert! Food sensitivities are okay - you can get through them and although life will be different, it really won't suck! We come from a house with a shellfish allergy (me), a peanut allergy (my son), celiac disease (me), and multiple food allergies on both sides of the family. So for us, food was the easy way out, but it's still hard. We've learned through trial and error what works and what doesn't, and I'm going to share as much as I can with you.

Thanks for reading,
Amanda