[jenjenl18]

Quick background...my 22mo DS is FTT (24lbs) and has some gut issues...of the celiac blood tests only his Gliadin IgG came back + but he has low IgA which screws up the others. Thanks to a connection I have with Dr. Fasano, we got in to see Dr. Safta at Univ of Maryland very quickly. She thinks its celiac, is very concerned about about his growth and wants to quickly get a 100% diagnosis. She said +gliadin in kids <3yo is very specific for celiac.
So...next thursday he is scheduled for EGD with biopsy. Poor thing will have to be NPO after midnight and the EGD is set for 8am or 9am so we'll have to get there 6-730 depending.
Moms who have been there, what should I expect? Any tips/advice? Anything. TIA

 

[crunchy_mama]

I'm sorry don't have btdt advice. We suspect Celiac's w/ our son but haven't done the biopsy. I hope it all passes well for both of you and he gets on the diet and starts healing. Have you checked celiac.com? they have a great forum with lots of support.

 

[jenjenl18]

No, thanks that is helpful. I didn't even think about that with my pregnancy brain going full force! While I know celiac.com will be helpful I'd love a natural-minded MDC mommas perspective on things too, ykwim? As far as seeing him as soon as he wakes up, when to nurse him afterwards, etc.

Oh I meant to add before: We would just trial GF but DS' main symptom is weight loss/growth stuff so its important to get a diagnosis for him ASAP bc it'd be difficult and lengthy to see if GF was helping. Otherwise I'd totally try to avoid the EGD if I could.

 

[JaneSmith1010]

Your LO doesn't sound that underweight...my 26ish MO is only 28lbs and 3' tall. He is suspected Celiac and has been GF since accidental glutening of me during his infancy. If you think the biopsy will help something and you don't plan on going GF whether you get it or not, good luck. I haven't even had the biopsy myself so I can't tell you what to expect, esp with a child so young.

We can be here to answer questions about symptoms, gf cooking, and social issues surrounding gf living though. Let us know how it goes for LO.

 

[crunchy_mama]

Perhaps- you might have more luck posting a general question in Toddlers about toddlers and anesthesia- I find that interesting as well about the FTT diagnosis- my just turned 24 month old is 23 lbs. I know she has milk issues and we have eliminated due to her brothers issue w/ gluten. I hope it all goes smoothly for you. Like jhow said we can help w/ recipes and such if you need.

 

[jenjenl18]

My son was 23lbs 6oz at 10mos (so 75%) and as of last month was the same (making him 10%) and meaning he didn't gain and hold on to weight for a year. At one point ~1yo he got up to 25lbs but dropped back to 23lbs a couple months ago. He was a late to solids kid. Hes finally eating more and despite fatty/calorically dense foods and adding oils to everything, he is not gaining, wasn't even maintaining. Thats not good for the growth pattern he had been showing in infancy. He also wasn't growing much in length. The 24lb and 34" was a surprise to me yesterday. (He gained <1lb and grew ~1.5") 24lbs might be normal for some kids but if you saw his growth chart your jaw may drop.
He has the celiac look. Rather bloated belly, pale, circles under eyes.
I'm getting the biopsy to make sure celiac is definite. I don't want to just go GF, see no improvement in growth and start looking for other dxs and assume celiac isn't there when it could possibly be celiac and something else.

I'll def be back for diet advice if it is in fact Celiac. I know a lot of celiac moms hang here and though the biopsy isn't super popular in this group, I figured it was worth a shot. Thanks crunchymama...celiac.com has already been helpful!

 

[sbgrace]

I agree the biopsy is the best choice. We did a celiac biopsy (along with looking for other things). I (our ped suggested it so it wasn't just me) messed up and we went gluten free before we finally biopsied for continued growth issues. So you're doing it right and I agree you don't pull and then wonder. What would you like to know? NPO can be tough--we just distracted as best we could but fortunately our appt. was first thing. Once we got to the hospital he was pretty distracted by the action so the travel was the hardest part. I was allowed to observe. Kids can wake up "out of it" and even combative after anesthesia. If that happens don't let it scare you. Our procedure was quick. He fought the mask and that was the hardest part/knowing he was scared. Another surgery (different situation) they gave a med first so he was loopy and happy and not scared. It depends on the policy of the hospital/clinic how anesthesia in kids is handled.

 

[jenjenl18]

Thanks Rachelle, that was def helpful.

 

[momofmine]

It sounds like you feel good about doing the biopsy, and know that is what you want to do. If you don't get any information from it, there are other testing options. Here's a helpful article about testing:
https://www.enterolab.com/StaticPage...yDiagnosis.htm

 

[luv_my_babes]

...

 

[JaneSmith1010]

OP, hadn't meant to sound like I was doubting your decisions. It just happened to come off that way. You child's weight fluctuations sound erratic. I hope all goes well for you. Will be checking back.

 

[jenjenl18]

jhow- You didn't come off mean in your post or anything...I just wanted to extrapolate on my sons weight history...because your right 24lbs isn't always FTT for a 22mo boy if they've been following around 10% for they growth rather steadily. My first post didn't make it clear that he had quite a drop and hadn't gained in a long time.
I'm dreading the biopsy but I know for us to be 100% GF for him, we need it (otherwise my DH won't be convinced enough for sure). That being said I know biopsy isn't fool-proof, but hopefully it will give us some answers. And I will def appreciate help in the near future on getting started on GF!

luv_my_babies- thanks for your post, its reassuring to hear. Did they do the mask...I'm thinking I might get a mask and start playing with it so he doesn't freak out day of (don't want him going under screaming

) He freaks out when he has to get blood drawn so I'm thinking gas first might be the way to go.

 

[sbgrace]

Jen, you can try practicing (they make masks for nebulizers). But I don't know that it is going to help honestly. I mean for a young kid they are in an operating room with people they don't know who are putting a mask on their face. It's not going to translate from practice at home because it is more than just the mask I think. That said, I've home prepared my kid for things and he did much better than I expected. So it's worth a try. But the important thing is it is very, very fast. So by the time he figures out what's happening he's pretty much out. And I don't think either of my kids remembered anything about their surgeries-including the one who had one at 3.5 that started pretty traumatically for him. Call and ask for the policy. Some will offer versed first which is a liquid med they give in the waiting area. By the time they come to get the kiddo for surgery they are "loopy". The one surgery that they used versed my kiddo was laughing and waving bye to us. Not everyone likes versed though I've noticed on the special needs board.
Oh, I assume this is going to be a gas anesthesia--it's a really short procedure and all the short ones for us have been gas. Still worth asking.

When you go gluten free (as I assume this is celiac) I've got some great things for you options/cooking wise.

 

[deditus]

I would definitely get a mask and play doctor. I did this with my dd to prep her for the dentist, ped, ped gi, etc and it really helped her not get freaked out. She plays doctor with her babies all the time now, doing the same thing I did with her.

 

[crunchy_mama]

Quote:

Originally Posted by jenjenl18 My son was 23lbs 6oz at 10mos (so 75%) and as of last month was the same (making him 10%) and meaning he didn't gain and hold on to weight for a year. At one point ~1yo he got up to 25lbs but dropped back to 23lbs a couple months ago. He was a late to solids kid. Hes finally eating more and despite fatty/calorically dense foods and adding oils to everything, he is not gaining, wasn't even maintaining. Thats not good for the growth pattern he had been showing in infancy. He also wasn't growing much in length. The 24lb and 34" was a surprise to me yesterday. (He gained <1lb and grew ~1.5") 24lbs might be normal for some kids but if you saw his growth chart your jaw may drop. He has the celiac look. Rather bloated belly, pale, circles under eyes. I'm getting the biopsy to make sure celiac is definite. I don't want to just go GF, see no improvement in growth and start looking for other dxs and assume celiac isn't there when it could possibly be celiac and something else. I'll def be back for diet advice if it is in fact Celiac. I know a lot of celiac moms hang here and though the biopsy isn't super popular in this group, I figured it was worth a shot. Thanks crunchymama...celiac.com has already been helpful!

Sorry I didn't mean to come off as questioning. I realize now it probably sounded that way. It is hard enough when people doubt you. My son has had a similiar growth pattern as well. Unfortunately I don't have a supportive ped- mine just said- oh= well he is still on the growth chart- never mind the losing weight and falling so far down. I sincerely hope that you are one of the lucky ones that gets answers from your biopsy and things go as best as can be- keep us updated.

 

[jenjenl18]

crunchy_mama-
Its no biggie really. I'm sure now my post sounded like a snippity response but was more intended to explain the FTT diagnosis, which is off the growth chart or a significant drop in percentiles. Forums can be disadvantageous like that! No biggie really. And sorry if I also sounded snippity!
My ped, while I love her, is very lax (which is part of why I love her). I pushed her to order more celiac testing when his IgA TTG came back neg and his IgA was low. I was the one to contact Dr. Fasano (lucky for us, he was a professor of mine) and figure out which tests and then told her order x,y,z. When his gliadin was positive she told me is was a weak marker and he told me to come in. She didn't know gliadin in kids <3yo is highly indicative (most people don't). I wrote her an email sharing all the new info I learned to help future patients, I know she'll her me out. But I sure am glad I pushed her a little.
I will try the mask. The play doctor toys I got (otoscope, stethoscope, BP cuff, etc) have not helped but he loves to play with them...at home only! Its worth a shot with the mask though- can't hurt! I remember the mask when I was 4yo and had to get tubes in the ears....they let my mom hold me in her arms and hold the mask over my face. Hopefully they will allow me to do the same. I might have to be pushy (I'm not good at that!)