Friday, June 12, 2009

At Long Last....L's Story

I apologize that up until now I have talked bits and pieces about our life with EE without writing a good background post on how we got here and where we are. So without further ado, the short version of L's story.

L was born a month early at 35 weeks and 3 days gestation--so just a little pre-term. He had, we were told, "typical preemie problems"--hypoglycemia, difficulty maintaining his temperature, suck-swallow-breathe problems, and then jaundice, so he was in the NICU for 5 days. He was an unhappy colicky baby, but he ate well (almost exclusively breastfed after being supplemented with formula while in NICU), didn't spit up much, just cried a lot. We thought the colic passed when he was 4 months old. He had a quieter two weeks or so, then got fussy again. We attributed it to teething. He spat up more and had some diarrhea, but thought it was teething and all the extra drool.

At 6 months old, he had several episodes of screaming followed by vomiting. His pediatrician saw him twice during this 10-day stretch and called it a stomach virus. "Don't worry unless the vomit is green (bile) or projectile." Then on Dec. 30, 2005, in the evening hours he started screaming again. This time we knew what was coming--scream scream scream and vomit. When he finally threw up, it shot 3 feet in front of him and was distinctly green. We headed to the ER and I put the white towel with green vomit on it into my backpack, determined to be taken seriously, this was no stomach bug.

We headed to our favorite hospital at the time, SHS. When we were in triage we were describing the vomiting and the nurses asked, "Is he always this pale?" We said "yes, that's his normal skin color, he's very white." We were always getting compliments on his porcelain skin. Little did we know....

The doctors cared little about the vomiting. They were concerned he was so pale and then with how difficult it was to get blood. It took several people and pricks and a loooong time to get enough blood to send to the lab. At some point I nervously chuckled, "well he must have some blood somewhere because he's alive." I'll cut to the chase, it was horrible and several hours and lots of waiting until finally a doctor told us what he thought was happening--he thought L was very anemic and if the numbers are as bad as he thinks, we'll need to go to Children's Hospital for transfusions.

In the end, he had a hemoglobin of 3. As it was described to me, 13 is normal, 9 gets you a blood transfusion, 6 you're in so much pain you can't move, and L was at a 3! Anemia has nothing to do with skin color (L is very white), but cheeks should be rosy and lips should be red. I had noticed L's "cute" pale pink lips weeks before, but I didn't know that was a bad thing. :-(

With an IV sticking out of his head, L and I were taken by ambulance to Phoenix Children's Hospital (PCH). The paramedic riding with us summed up the situation better than most that night. Blood transfusions will fix the anemia, he said, and he'll be fine. The tough part will be figuring out how he became anemic in the first place. He was pretty much dead on.

Hubby followed behind us in our van. We checked into the Pediatric ICU (PICU) and it was a long night of doctors and tests and I don't remember what all, and then he started having the transfusions. He was in the PICU two nights, then moved up to the hem-onc (hematology/oncology) floor for one more night.

He came home a new kid, happy, energetic. But he still had these screaming vomiting episodes. After about a month, the hematologist declared that GI must be the root of the problem and we started seeing our gastroenterologist. We also got a new pediatrician since clearly our first one was a total idiot--we'd been in her office twice while L's hemoglobin was critically low and she had no clue! I can't remember everything we did, lots of tests, at one point the docs suspected Meckel's Diverticulum and he had a nuclear medicine scan--awful. Then they did upper and lower endoscopies. After the procedure, the GI pointed to a picture of his colon and said it looked like allergic colitis. Since I was breastfeeding, she suggested I take dairy and beef out of my diet. After 10 days without dairy or beef (wow, that was tough!) we got The Call.

The diagnosis was Eosinophilic Esophagitis. The theory was that L was allergic to foods in my diet, probably milk protein, and eosinophils were attacking L's esophagus and he was bleeding microscopically for months, not visible in his poop. I had to wean him immediately and put him on a special formula (Neocate, an amino-acid-based medical food), that was his only food for 6 weeks, they then scoped him again and the number of eosinophils was greatly reduced, the treatment was working! At this point, L started sleeping better and was a happy kid without screaming vomiting episodes. We started seeing an allergist as well and doing food trials to see if he had safe foods. Allergy prick testing showed no allergies (his is not a histamine reaction, no hives or anything), patch testing revealed allergies to corn, wheat and soy. Milk and eggs came up negative but we were still to avoid those. Food trials picked up blood in his poop for green beans, strawberries, blueberries, oats, chicken, turkey and a bunch of other foods.

I should add that we were fortunate that L would drink the Neocate from bottles, he has never (knock on wood) needed a feeding tube, as is often the case for kids like L who can eat so few foods and need so much formula.

Where we are now:
L has 13 approved foods including most recently his first proteins, beef and eggs. He still needs the formula for all his nutrition--he drinks, from bottles (yes, he's nearly 4 years old), about 42 ounces of Neocate Jr. per day, mixed with a couple ounces of orange Pedialyte for flavor (I'll spare you that long story). He is a very picky eater (of the 13 approved foods, he eats about 8) with a strong gag reflex. We sit him down for 3 meals a day, but he eats so little and mostly fruits and vegetables, that it doesn't make much dent in the calories and nutrition he needs. We are on a waiting list to start feeding therapy to help introduce more foods and textures and to move him off the bottle.

Otherwise, he's a very healthy kid--99th percentile in height and at his last checkup 90th percentile in weight--woohoo!--prompting his GI to finally let us try to move him off the bottle, since 42 oz a day is way more than necessary. Yea!

So he's a healthy happy kid. Our struggles are mostly that he can't eat what other kids do. And he won't drink a bottle when we're on-the-go, he has to be lying down and watching tv (hey, ya do what ya gotta do when this keeps your kid alive), so long outings or travel are very tough. But we count our blessings--his EE was caught very young and he doesn't need a tube--very lucky in the EGID world. Praise the Lord.

Thanks for reading, I'm sure I'm leaving out a lot of stuff, but those are the "highlights." You can poke around other posts labeled "ee" and "about" for more of our story.

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