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Need Advice On Annual Biopsies For Toddler

Glutenfree4LJS

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Glutenfree4LJS Newbie
Glutenfree4LJS
Posted

Hello Everyone!

First off thank you for taking the time to read my post. About 4 months ago our 2 1/2 year old son was hospitalized due to "flu like" symptoms that were not going away after 3 weeks. After a week long stay and several blood tests we finally got some answers to what was going on and he was diagnosed with Celiac confirmed by biopsy. Since being home and gluten free he has done wonderfully. He is back to gaining weight and thriving as he should be at this age. We saw his pediatric G.I. last week and he was very pleased with his progress. The reason for my post on here is that the G.I. mentioned during our last appointment that he will be doing annual biopsies. I was a little taken back by this because in all the research that I have done over these last few months I haven't heard of anyone needing additional biopsies especially annual ones if everything was going well on a gluten free diet. For all the parents out there, is this standard procedure? Doing the first one was so hard that I'm not sleeping at night thinking about having to put him through it all over again. I worry about all the risks involved with putting him to sleep, etc. I just wonder why its necessary if he's thriving and all of his original symptoms have gone away. Any information will help. Thank you in advance!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I agree with you. If the child is having no symptoms and is thriving there is no need to put him through these yearly procedures other than to pad the GI's pocket. Do make sure that both parents and any brothers and sisters get tested also, even if they don't think they are having symptoms.

lillysmama08 Newbie
lillysmama08
Posted

I agree with you. If the child is having no symptoms and is thriving there is no need to put him through these yearly procedures other than to pad the GI's pocket. Do make sure that both parents and any brothers and sisters get tested also, even if they don't think they are having symptoms.

no, no, no, that is not routine. My daughter had the one biopsy and that was it. She has her blood checked annually but not a biopsy. So if you are worried about it ask more questions or just say no its not nessesary. Good Luck

shayesmom Rookie
shayesmom
Posted

Hello Everyone!

We saw his pediatric G.I. last week and he was very pleased with his progress. The reason for my post on here is that the G.I. mentioned during our last appointment that he will be doing annual biopsies.

I think that the only appropriate response to this GI would be "Over my dead body". What in the world could this doctor be thinking? No wonder insurance rates are soaring! I can understand checking levels with blood tests, but there is no medical justification of doing an annual biopsy. Recovered cancer patients aren't screened with this kind of intensity.

Not to mention that there are still doctors out there who dx celiac via biopsy, perform another biopsy 2-3 years down the road. If the villi are completely healed, they then determine the patient "cured" of Celiac Disease and tell them they can "go back to eating gluten". :blink:

I think that the doctor needs to explain himself further and also should be reminded that you are in charge of your child's medical needs. You choose what and when medical procedures are done.

seezee Explorer
seezee
Posted

Not sure where you live but try to work with a pediatric GI who specializes in celiac disease. We live in Boston so there are tons (maybe more like ten) of different choices so we can be super picky. There are lots to choose from. I think the doctor who did our biopsy said that they rarely/never do a repeat one in children and only under unusual/extreme circumstances (like the kid is still really sick). He said it is more common in adults to repeat occasionally, but in our family only the kids have it so far. (Maybe your circumstance's are unusual or he saw something he wants to follow up more closely?) I think it is most important to have a doctor that you feel it's ok to ask, "Is this normal to repeat? Why do you do this?" It could be the guy has no idea what he is doing or has some special reason for this in your child's case that is reasonable. I guess you have to ask him.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Just wanted to put another voice in for the "no, no, no." I've never heard of annual biopsies as standard procedure. Annual blood tests, yeah, but certainly not biopsies! No way!

cal220 Newbie
cal220
Posted

That is crazy - I've never heard of that either. Only annual blood tests here and siblings TTG tested every 3 years.

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OBXMom Explorer
OBXMom
Posted

We did do a repeat biopsy for my little guy. He was not improving on a gluten free diet, and the doctor was checking for other potential issues at the same time. (Thank you to everyone who was kind and supportive to us on this board during that scary time.) It was helpful to see his healing process was just not completed yet, but that he was healing. But for your doc to plan on a repeat biopsy - yikes! I'd ask him what studies he can cite to show the necessity. . .

celiac-mommy Collaborator
celiac-mommy
Posted

Another vote for "no, no, no!" As long as he's healthy and thriving, what's the point?

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

In my opinion, if your child has no more ongoing issues on the gluten-free diet, then repeat biopsies are about as appropriate for your child as they would be for any healthy child.

You wouldn't take a healthy child, knock him out, and perform a biopsy every year. That's both invasive and somewhat risky. Not as risky as open-heart surgery, but there IS a risk involved with sedation, even "twilight" sedation, and there is certainly risk of perforation, infection, etc, with the biopsy itself.

For my own endoscopies, I chose no sedation, and with the second endoscopy, my vocal chords were permanently damaged.

As stated by other posters, the only possible reason I can see for this is to pad the doctor's bank account.

I would find another doctor immediately, and report this one to the insurance company. I wouldn't EVER trust this one again with my child's health, if he is willing to place it at such risk for no good reason.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

We just had my son's annual visit to the GI today...he didn't even want to do bloodwork. They checked his height and weight (woo hoo he gained over 10 pounds in one year!!), gave him a cursory once over, asked if we had any questions or problems and said see you in a year. I might have liked a little something more, but I don't know what that would've been. Just felt like a nothing sort of appt.

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