Friday, January 9, 2009

the boy's health news, jan '09 edition

i haven't updated on my boy's health in a while. it's a major saga, so i'll recap first.

  • when he was 6 months old he stopped gaining weight. babies often slow down their growth around then, so we weren't panicked, but we were keeping an eye on him.

  • at 1 year i had to go back to work so he went to daycare. he started getting sick at least once a week (colds, etc) and had major digestive issues.

  • at 15 months i had to quit being the sole breadwinner to keep him home, since he still hadn't gained any weight and looked like a skeleton.

  • a month later i tried eliminating gluten from his diet and within a week he was digesting food properly, his bloated belly had flattened out, and he was much happier. he gradually started gaining weight.

  • all through this time we were seeing doctors and trying to get some help for him, but hitting dead ends. when i cut gluten from his diet the doctor accused me of dietary neglect. i got a dietitian to sign something saying that his diet was fine to keep the doctor from reporting me to the child welfare people, then quit taking him to the doctor for a while.
  • since then he's gradually put on weight and grown. when he's exposed to even trace amounts of gluten, even if he inhales it, he gets really sick for three days. he also seems to have a compromised immune system. he picks up every stray bug that comes his way. i've found that if i keep him at home he gets sick much less often, so we stay home pretty constantly. it isn't fun or exciting, but i can't handle the excitement of him being sick all the time. we've also gotten a new, better doctor, and started seeing specialists. he's had a zillion examinations and tests and no one has any idea what's wrong with him. they've ruled out several things, including celiac disease. we're still pursuing a diagnosis, but we're encountering mostly indifference from the medical community, so it's frustrating. i don't know if they don't believe me or think i'm exaggerating or what, but they don't seem to be that serious about figuring out what's wrong with my boy.

the update:
in december he got a bad cold and a cold sore, which developed into open, festering sores all over his lips, the inside of his mouth, and down his throat.

here he is on christmas eve, when he was starting to get better.

he literally didn't eat anything for a week, and he lost a lot of weight. he didn't have any weight to spare to begin with, and now he looks like one of the kids from world vision infomercials, minus the flies. and his body has been acting like it has gluten poisoning for the past two weeks, but with no apparent triggers. and he's suddenly not toilet trained at night any more, plus he's having bladder control issues during the day. something is wrong.
i don't want to take him to the doctor's, he gets sick every time we go there. but he's sick, anyways... i don't feel like asking the doctor, again, to help us figure this out is particularly productive. i'm just not sure what else to do, and doing nothing is obviously not helping him. it's really discouraging.

after all his weight loss i've been fanatical about stuffing him with as many calories as i can, most of them fats. he's been eating a delightful mixture of applesauce and lard. think creamy, faintly bacon-y applesauce. yum. lucky for me he has no idea that most people don't eat this crap, so he chows down obligingly.

anyone have any brilliant ideas?

1 comment:

  1. I am so sorry to hear about your a fellow mommy I can only imagine how you must feel...I know you are far away...but I have to say the Childrens Hospital of an amazing place...and maybe they can direct you at least to some other must be so hard when you aren't getting any answers...I wish you much luck...