How Often To Biopsy?

[kbdy]

My dd was dx'd just over a year ago. I'm wondering how often, if ever, would she need to go through the biopsy? My FIL has it done every year to see if there's any improvement in the villi.

[Jules]

My daughter has had 3 since we found out but they have been: 1 to find out, 2 when we put in a feeding tube and again yeasterday when we put in a new type of feeding tube. This has been done since April 2008. My GI said he would probably do it again at 1 year since she is showing no signs of any improvement... The 2 biopsys did not change so am awaiting for 10 days for these results.

[kbdy]

Dd is gaining weight & isn't showing symptoms, so that's why I wondered. Do they do that to see if they're healing or is it just not necessary?

[taweavmo3]

My dd was dx'd 3 1/2 years ago, and we are pretty much free and clear of the pedi GI unless she starts showing other symptoms. We had the initial biopsy, then one follow up blood test 6 months later to make sure her antibodies had decreased. That's been pretty much it for us! We checked in every 6 months for two years just to make sure she was gaining weight, but no repeat biopsy.

[bear6954]

My dd was dx'd just over a year ago. I'm wondering how often, if ever, would she need to go through the biopsy? My FIL has it done every year to see if there's any improvement in the villi.

My sons gi dr said that we should not have to do another bioposy unless he shows no improvement in the blood work and other symptoms. He did say that 5 yrs from when he was diagnosed he would need a bone scan to make sure he is not getting oestoperious (cant spell it!)

[Amyleigh0007]

My son has had 2 in 6 months. The first was for the dx and the second was 4 months later to see if he had any improvement. I don't think I will allow anymore. It's pretty upsetting for him and I don't think another is necessary since he is gaining weight and his health has improved so much.

[ek327]

I don't intend for my daughter to be rebiopsied unless her antibodies aren't going down or her symptoms return. she had a very mildly positive biopsy in June, and has been great since. hopefully, her antibodies will be down when we recheck in a couple of months.

[kbdy]

I never thought about getting her blood checked again! We haven't had that checked since her initial blood test that came back positive.

That's a much better thing to do!

[Fiddle-Faddle]

It's pretty upsetting for him and I don't think another is necessary

Besides for the upset and lack of necessity, it ought to be mentioned somewhere in this thread that there IS risk associated with biopsies, including reaction to the sedative (much, much higher risk if they have to do total anesthesia as opposed to light sedation, and with small children, they usually do total anesthesia, AFAIK), possibility of surgeon "nicking" something, OR errors, and infection (remember, MRSA is now a risk in practically every hospital).

I've read in the newspapers and seen on TV about children dying in the OR during routine ear tube surgeries, but somehow, the doctors don't often mention these kinds of risks...

Certainly, they were never mentioned to me when my oldest had open-heart surgery. We were only told that "there was a tiny chance of infection." We were never told that he might have any of the after-effects that he did end up having.

So, PLEASE, do a lot of research before considering a biopsy on a small child whose symptoms are gone and whose bloodwork is good!