My World Is Upside Down

This seems like the place to share all my feelings… being my blog and all… But I’m not ready. Instead I’m just going to give you this link. Please help if you can. Pray if you can’t.

http://www.youcaring.com/other/bring-our-kids-home/240996

Health Background

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K is my oldest. She was born at 27 weeks. She weighed just 2lbs 6oz a birth. Which was actually big for her gestational age.

n 1% of premature babies are born before 28 weeks. But their odds of survival are getting surprisingly good. We had no complications and she was able to come home after just 10 weeks in the NICU. And I was able to breastfeed her until she was 2.

Last year,during a day of fun in Seattle, we noticed that K looked yellow. Being that I am not particularly white, my kids have inherited my slight yellow undertone, and it wasn’t immediately evident. But I called Daddy over to come take a look at her eyes in the light. The whites were yellow. So we scooped up our crew and went straight to the Seattle Children’s Hospital ER. They couldnt tell us much of anything after the first round of tests. It wasn’t cancer. Her liver and surrounding organs were definitely swollen. Had she been vaccinated for hepatitis? Was she exposed? (Yes. No.) Had anyone been sick? The boys had had a cold the week prior… But how could that possibly matter? After a few hours, they could only send us home with a referral to their hepatologist.

A couple weeks later, we met one of the doctors. She ordered a round of blood tests on a suspicion. She said it might be an autoimmune disease and she needed to look for the markers. It came back positive. Autoimmune Hepatitis Type 1. Her AST and ALT were each about 2500. We would need a biopsy in a few weeks to confirm, before starting aggressive treatment. But if we were right, we caught it very early. Giving K the best possible chance to get healthy.

K was a champ for her biopsy. My mother bought her a bear which she still sleeps with and has dubbed Princess Beauty. Princess Beauty will likely be present in many pictures to come. Image

Autoimmune Hepatitis is a rare disease. It is thought that it MIGHT be related to genetics. The trigger is different from person to person. In our case, I’m pretty sure it was EBV. But it can be many things… Food allergies, vaccines, stress… The diagnosis normal comes after years of symptoms. Which include itching, flu-like symptoms, fatigue and jaundice. By the time  you get jaundice, you’ve normally experienced some cirrhosis and may need a liver transplant. K has no cirrhosis. She likely won’t need a transplant. At least as a child. Despite the overlapping Sclerosing Cholangitis. I do know more about both diseases, including statistics, but I imagine it is less interesting to people whose children don’t have it. Suffice it to say, it’s rare. All of it. And without treatment, K would be dead before the decade was out. Treatment include immunosuppressants, corticosteriods, and something called ursodiol for her bile ducts.

We started K out on 30 mg of Prednisone, 25 mg of Imuran, and Bactrim. At first the prednisone gave her stomach aches. And she even threw up once. I caught her a few times spitting her pills back out into her milk or hiding them under her pillow. (Yes, my children swallow pills early. Unlike their mother who didn’t until 12.) But I stressed the importance. And her AST and ALT began to come down a little at a time. Giving us the opportunity to lower her prednisone. It’s now 2.5mg a day. When her stomach aches continued to get worse, I called. And called. And called. And we finally realized she has PSC overlap. So we added the ursodiol. There is no curing PSC. But when it is caught this early, the ursodiol seems to keep it at bay. We went in for weekly bloodwork for a while. Then twice a week. Once a month. Now we just go before each follow up appt. Since she had one Tuesday, the next time wont be until November. K hates blood draws. Like, vehemently loathes them. You’d think she’d get used to it… Anyway, her GGT continued to rise. So in July of this year, they added something called Cellcept. Or MMF. It is a stonger immunosuppressant. There was immediate improvement. So they stopped the Imuran. Below are the most recent labs:

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K hasn’t really grown since we started the steroids. Not surprising to me because she wasn’t big on growing before… But her doctor is keen on getting her off the prednisone completely as soon as possible. So we don’t miss her opportunity to have a growth spurt that puts her at normal size for a human being. 🙂  Here are her most recent measurements (keep in mind that she’s 6.5):

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Yeah… We got her tall shoes for our trip to Disneyland for the kids’ birthdays this year. And they let her on all the big rides. Shhh. She’s old enough. And loved it. So that’s K.

Child number two… M. M was born at 33 weeks, after I started funneling at 28 weeks and got to spend 5 weeks laying in bed trying to keep him in. He was 5lbs 3oz at birth (also big for GA.) He was perfectly fine until he started eating solid food. And then when he stopped breastfeeding at 14 months, he stopped growing. He was 19lbs until he was nearly 2. I tried eliminating everything I could possibly think of from his diet. And still there was blood, and diarrhea and no growth. They diagnosed him with FTT. And we started a probiotic and pediasure. Eventually, a friend of mine went GF with her son and a lightbulb clicked for me. So we had him tested for celiac and immediately went gluten free too. Immediate improvement. I recently discovered Whole9 because of my sister-in-law, and have been flirting with the idea of going Paleo for the whole family.

A is healthy. Haha. I feel bad giving him the short story, but we sewed that kid in. He came out on time. And he is the little blond picture of health.