Make sure you get copies of his results for your own file. I keep copies of every test, blood work and dietary change in a binder. This way we do not have to redo lost tests or repeat tests that have already been given recently. I agree we have to be advocates for our own kids.

Keep up the good work mom!

L xo

Way to go mama! Way to look out for your son! I pray you know more soon!
Hang in there!
lisa

Thanks :). Yes, I keep a folder with everything in it..... Gosh....so much has happened during the last two weeks. My son's video endoscopy went fine----it's his colon and ileum that are a mess---not so much in the small intestines. Anyway, my son FINALLY got his first Remicade infusion at the children's hospital last week. Now that he's on it, we can begin reducing the prednisone again. He's gaining weight, but hasn't grown at all in over a year (stuck at a little over 5"3").

Here's an interesting insurance tidbit, though.......At the hospital last week, the nurse filled up 3 viles of blood to be sent out (this was before beginning the remicade infusion). I had just learned from a young guy at the reception desk the day before that my insurance won't cover any x-rays or labs at the hospital, and I would have to go through my provider medical group in my own town. Anyway, I told the nurse that I didn't think my insurance would cover the bloodwork, but I wasn't sure. She waited an hour and didn't hear back from someone and grabbed the blood and said it "should be ok" to send out. I didn't let her take the blood and made a lot of phone calls. I found out that I would have been stuck with over $1000 in lab bills if the blood went out!!! I went back downstairs and thanked the young guy for informing me of my insurance rules. I had no idea, and will now be ever more vigilant with ANY procedure that costs money and to make sure it is properly authorized. My son has to get his blood drawn again this week locally. Gosh...lots to keep track of.

I pray that your kids are on the healthy path....Davismom....how's your son doing?

Maspaten-mom... i hope your son is feeling better this year. What medicine is he on?

Things are going really well in this neck of the woods. We still eat gluten-free, mostly organic and very little processed food and this seems to be doing the trick.

Biggest obstacle right now is having to deal with a teenager... this has been really challenging. He wants to be independent and carefree. Wish I could see inside and know exactly what is going on in there! But, so far so good.

I am working really hard to back away (gently) and give him more independence and freedom. Of course I worry and wonder about the future. Really hard to let go of the responsibility for food, vitamins, and supplements, but I know that him being able to do these things is important and lifelong skills he will have to eventually take care of himself.

Hard to believe how much money lab work and medical procedures cost. I hope that the Remicade helps your son and that his symptoms go into remission quickly.