<2yo Son Scheduled For Biopsy, Questions

[jdoylemd]

My 22mo son is having issues gaining weight and growing (now back up to 24lbs, 34inches). He has some constipation issues and the typical celiac look. Of his blood tests only the gliadin was positive, which Dr. Saftka (Univ of MD) says is highly indicative in <3yos. His IgA was low so his IgA TTG, EMA, etc were most likely falsely negative.

We saw Dr. Saftka yesterday and she scheduled an EGD with biopsy for next thursday. She says they try to do light sedation and try not to intubate.

Just want some support and advice from parents who have BTDT. How long did it take for biopsy results to get in? Were you with child when they went under? Will the let me be there with him when he wakes? How long will he be groggy? How long should I expect it to take?

He still nurses 3times a day and will have to be NPO after midnight until the 8am or 9am procedure time. He usually nurses in the morning but we can't When can I nurse him afterwards? Are they gonna give me a hard time about this you think?

I know thats a lot of questions, but I'd appreciate any help. Hes so young and I hate to put him through this but we need a definite reason for his weight loss. TIA

[brazen20au]

honestly i wouldn't feel at all bad about 'putting him through it' - at 2 they recover so quickly and then you'll have a definitive answer.

my dd was 21 mo when she had hers, she was amazing the way she went through it - certainly much easier than me!!

i was able to be with her when she went under (though couldn't due to my own issues). i was there when she woke and she was a little groggy though not for long at all! within an hour or so after waking she was her normal full of beans self - i expected her to want to rest but no... (unlike me who slept all afternoon and took a further 2 days to recover lol). she didn't even have a sore throat.

the procedure doesn't take very long at all, for us the waiting took the longest.

good luck with it all

[mom2twoangels]

Hi,

My dd was 2 1/2 when she had hers. Here blood tests were extremely positive but I wanted to know for sure before making a life long decision for her.

They had her drink some stuff to relax her before they took her back I got to sit with her while it took effect, she got really tired and reallly silly - was kind of odd seeing my 2 year old like that.

They said they weren't going to intubate her but they ended up doing it anyway. We weren't happy about that. When she woke up we got to go back with her - she was calm for a while and then she got pretty crabby for about an hour, after that she seemed fine other than her voice was funny for a few days we figured sore from the tube.

Our GI said it looked enough like celiac to go ahead and go gluten free before we even got the biopsy results - which were also positive

[Genna'smom]

My daughter had the biopcie doen at 22 months as we had no clue what was wrong with her and they had done blood work which was negative. The did the endoscopy and biopcie to look to see if her acid reflux was causing her problems and then we waited to see as it did not appear to be the problem. The test did ake about 5 days to come back and that was the hardest as we were in a hospital at the time with no answers to any or our questions or concernes just that she had stopped eating, drinking, growing and was down to 18 lbs. They ended up putting in a feeding tube so she would not get any lower in her weight. She still has it almost a year later but no one is quite sure why but the procedure it self went fine and I did hold her as they put her to sleep and they got me as soon as she woke up . She did come out crying and it took me a while to settle her down and her voice was scratchy for a couple of days.

Good luck to and follow what you feel you should do..

Bonnie

[rainewhitlock1]

My 22mo son is having issues gaining weight and growing (now back up to 24lbs, 34inches). He has some constipation issues and the typical celiac look. Of his blood tests only the gliadin was positive, which Dr. Saftka (Univ of MD) says is highly indicative in <3yos. His IgA was low so his IgA TTG, EMA, etc were most likely falsely negative.

We saw Dr. Saftka yesterday and she scheduled an EGD with biopsy for next thursday. She says they try to do light sedation and try not to intubate.

Just want some support and advice from parents who have BTDT. How long did it take for biopsy results to get in? Were you with child when they went under? Will the let me be there with him when he wakes? How long will he be groggy? How long should I expect it to take?

He still nurses 3times a day and will have to be NPO after midnight until the 8am or 9am procedure time. He usually nurses in the morning but we can't When can I nurse him afterwards? Are they gonna give me a hard time about this you think?

I know thats a lot of questions, but I'd appreciate any help. Hes so young and I hate to put him through this but we need a definite reason for his weight loss. TIA

[mygfworld]

Try not to worry about the whole procedure. It is scary for you, but your child will be fine. Talk to the dr before hand if you want to be present when they put your child to sleep. Don't worry about the nursing part. Pump a bottle or two for them if you think they really need it in recovery. I've held my kids as they put the mask on them to put them under...it rips your heart out because they cried and were scared, but it only lasted a few seconds until they were asleep and then I left.

When my then 2 yr old had her biopsy, I planned to be holding her when they put the mask on. Instead she fell sound asleep while waiting for her turn in the surgery room. The anesthesiologist (sp?) had young kids and just picked her up and carried her in like his own kid. So she knew nothing until she got popsickles and cuddles from an older nurse in the recovery room. So she was pretty happy when we were brought in.

For my kid the results of the biopsy were mixed, so I dont have a "positive biopsy" for her and it is really hard with drs now. IMO ask how many biopsies they are taking (I think 9 to 12 is a normal amount.) We had results within two weeks. In one case we had the results that day. So it just depends on the dr and the intestinal damage.

[jdoylemd]

Thanks for the responses. Though I will try not to worry, as a parent, we all know thats impossible. I'm hoping that the biopsy comes back conclusive. I know there is risk in false negs, but for when my son is 12yo and asking why we put him on this awful diet, I'd like to be able to say...your biopsy was positive- you have celiac for the rest of your life instead of ....well you had one blood test that indicated celiacs. And it will also help convince my hubby that the diet needs to be adhered to 100%.

I was planning on doing the mask practice but forgot to get a mask from my moms house last week. I doubt it would help though because the whole environment- white room, white coats, hissing mask, beeping, etc will probably freak him out. I will just have to remain calm for him. I wish I weren't pregnant so I could take a xanax! jk...sort of.

Bonnie, I'm so sorry your daughter is still having weight/feeding issues. Sounds like you've been through a lot. My biggest fear was that my son would need a feeding tube at some point...they are hard to get rid of.

So did you guys all go gluten-free right after biopsy? Did you wait to shop until after biopsy or did you go before hand? Whats the deal with oats- my son loves oatmeal- whats a good brand?

I've heard there are issues with xylitol in some people? We use spry xylitol toothpaste, is this gluten or just another intolerance common to celiacs like milk?

Is there a list somewhere of ingredients to blacklist/be on the lookout for for hidden gluten? I know rye, barley, wheat, spelt, gluten, MSG. Any others?

What do you guys order when you go out to chain restaurants or should I say which are the good restaurants out there? I've heard Chipotle is a good bet if you ask for glove change and avoid the soft tortillas. My DS lives on their chips guac and cheese! TIA

[HopeMum]

Hi,

My dd also sees Dr Safta at UMAB. She had her biopsy there last May (was 20 months) and everyone was great. I did not see her start the anesthesia but was there for her to wake up. Be prepared, I was expecting her to be curled up asleep but she was flat out and it scared me. She was absolutely fine and of course doesn't remember a thing. She also was used to having a bottle early in the morning but I told her the night before and then in the morning that she couldn't because we were going to the hospital. We live about 40 mins away from UMAB so I just left early and walked her around the hospital in a stroller. We got the results in about 5 days I think.

They did tell me to go gluten free immediately and we had been practicing for a while. I found it easier to not eat out for a while because it's kind of stressful and I have an older dd who is not gluten-free so it gets complicated.

Anyway, good luck.

Claire

Thanks for the responses. Though I will try not to worry, as a parent, we all know thats impossible. I'm hoping that the biopsy comes back conclusive. I know there is risk in false negs, but for when my son is 12yo and asking why we put him on this awful diet, I'd like to be able to say...your biopsy was positive- you have celiac for the rest of your life instead of ....well you had one blood test that indicated celiacs. And it will also help convince my hubby that the diet needs to be adhered to 100%.

I was planning on doing the mask practice but forgot to get a mask from my moms house last week. I doubt it would help though because the whole environment- white room, white coats, hissing mask, beeping, etc will probably freak him out. I will just have to remain calm for him. I wish I weren't pregnant so I could take a xanax! jk...sort of.

Bonnie, I'm so sorry your daughter is still having weight/feeding issues. Sounds like you've been through a lot. My biggest fear was that my son would need a feeding tube at some point...they are hard to get rid of.

So did you guys all go gluten-free right after biopsy? Did you wait to shop until after biopsy or did you go before hand? Whats the deal with oats- my son loves oatmeal- whats a good brand?

I've heard there are issues with xylitol in some people? We use spry xylitol toothpaste, is this gluten or just another intolerance common to celiacs like milk?

Is there a list somewhere of ingredients to blacklist/be on the lookout for for hidden gluten? I know rye, barley, wheat, spelt, gluten, MSG. Any others?

What do you guys order when you go out to chain restaurants or should I say which are the good restaurants out there? I've heard Chipotle is a good bet if you ask for glove change and avoid the soft tortillas. My DS lives on their chips guac and cheese! TIA

[jdoylemd]

Claire, thanks thats great info. Did they not allow you to be there for the start of anesthesia or was that by choice? I really want to be there. Do you recall if they gave her valium or anything first to relax her or did they do gas then general(IV) or just general (IV). DS does not do well with needles/being held down.

We're about 40mins away too...in bowie, md area. They already have us set to arrive ~6:30a-7:30a. Guess I'll be shopping that night. Fun

[Amyleigh0007]

My son was much older when he had his biopsy (he was 8) but children are are going to be scared no matter what their age. Before they inserted the IV into my son they used a numbing cream on his hand. It made insertion painless. I can't remember what the cream is called, sorry, but I'm sure if you ask about the numbing cream they will know what it is. We did not get to be with him when they put him under but I actually think that is better. I would have broken down and made him more upset. From the time they rolled him into anesthesia to the time they called us into recovery was about an hour. It seemed much, much longer. He came right out of the anesthesia and got to sip clear soda. They offered him crackers but when I told the nurse he had just been diagnosed with Celiac she apologised. Right after the biopsy, when my son was in recovery, the doctor came out and told us he could there was a lot of damage so he gave us a diagnosis right then and there. We did not have to wait weeks for results, luckily. That would have driven me insane. Good luck with your son's biopsy.

[mistyk11]

We went to the University of Maryland Medical Center for our daughter's (and my husband's) biopsy. She sees Dr. Fasano there. I think he is like, THE authority on it, the leader in the study of Celiac's in the U.S. He really put us at ease and explained everything that would happen before, during and after the surgery. He is very difficult to see, however, one of his team members told us that people wait months to see him. Thankfully, we chose the right pediatrician because she apparently has some pull in the medical field and got us an appt. two days after Dylan's bloodwork came back. I feel so lucky to be living 5 minutes away from such an incredible resource. Dylan was 12 months old when she was diagnosed and 13 months when she had her biopsy.

I don't think a hospital visit will ever not be stressful, on anyone, but just remember that anything you feel you may be "putting" your child through will be making a huge difference in his life. In retrospect, her biopsy was a breeze (on me, anyway) compared to having her stare and scream at me while I held her down so two nurses could put in an I.V. during our E.R visit when she got severly dehydrated. There should be a celiac center at UMAB (I'm not exactly positive, but I believe UMAB and UMMC function under the same umbrella) with someone who will answer any and all questions. Look up a lady named Pam King. She's one of the directors and she'll be happy to help you find someone to help.

The procedure is pretty much the same as everyone else has said. We were able to be with her up until they gave her the "silly juice," as they call it. She was too young to take it orally so they had to inject it rectally. In minutes it was working and she went right to the nurse with no issues and then we sat in the waiting room for a what seemed like hours. It was a shock to see her after the surgery, "laid out" like another had said. She came out, very mad, but calmed down after 5 mins. The surgeon won't be able to officially, on the record, tell you positively whether or not your child has Celiac's, but they'll have an idea. She was her normal self afterwards. I think her throat hurt but she couldn't really tell me. She had a mark on her tongue from the tube. Two days later, she ate like she hadn't eaten in weeks and did for a few months. Now she's a picky toddler (18 months).

Dr. Fasano said that it is always advisable to start on the gluten-free diet after the biopsy. If it comes back negative, no harm no foul. As for the food, there are a lot of great products out now, don't get discouraged. There are even gluten-free breadcrumbs, which are fabulous because you can make meatloaf, meatballs, coat chicken, etc. In Columbia MD there is a market called My Organic Market that has a lot of good prepared foods and ingredients. You're just going to have to get used to cooking, everything. I find that my vegan cookbooks are great because although they aren't gluten free, they are easily adaptable, plus I add chicken or turkey to a lot of them so Dylan and my husband will eat them. You'll find a lot of toddler food is already gluten free (hot dogs, bologna, fruit, veggies, rice cakes) but never make any assumptions. A couple days of research online and I'm sure you'll find the websites that tell you about the hidden gluten (sorry, I can't think of the website). Always read labels! Even if you've purchased the item before, similar products use different ingredients. Sorry to ramble. Good Luck and try not to worry too much. Just take it in stride, one day at a time.

[jdoylemd]

Mistyk- Dr. Safta is Dr. Fasanos peds gastro associate. I think she does all of the peds biopsies. Dr. Fasano is great and I was lucky to have him as a teacher in the past and be able to consult with him via email prior to coming in. You are very lucky to have gotten your LO in to see him so quickly. With all of his research, teaching and clinical duties he is busy but he still manages to be great to his patients! So many other doctors could learn a thing or two from him!

When I wrote UMMS I meant UMAB. The peds surg nurse called today and let me know he'd be getting versed in the bottom first and then they'd take him back. I asked if I could take him back myself but she sounded doubtful, asking why I'd want to see that. Its not that I want to see that but I don't want my son seeing some stranger as he goes down. And I'm well aware that the versed will make him not care but I do.

She said I could talk with the anesthesiologist morning of. Who knows.

I gotta figure out what I'm gonna feed him afterwards. Time to go shopping I suppose. Fun Fun.

Thank you everyone for your reassuring posts. I will be sure to update ASAP.

Jen

[Danesmommy]

My son was 16 months old when he had his biopsy and they didn't let me stay with him while they put him under. Afterwards he was sleepy but recovered quickly and was able to eat immediately withoug getting sick. However, my daughter was 8 when she had her biopsy. This time I was able to stay with her until she was asleep, but when she woke up she was grumpy and nauseated, and didn't feel well for a couple of hours. The procedure is quick and I had results in 2 days. Good Luck.