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My 2 Year Old's Endoscopy Is Next Week -Very Nervous


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#1 AGH2010

 
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Posted 30 June 2012 - 03:05 PM

Hi everyone,

I'm so relieved to have found this forum and to not feel so alone as I grapple with what seems to be an almost certain diagnosis of celiac for my 2 year daughter. She tested positive on her blood test and has a high sed rate (inflammation). The only symptom I took her to the GI for was chronic constipation, which my pediatrician kept assuring me was very typical in toddlers. So I never expected to be told that my little one might have something serious like celiac.

Anyway, at this point, I can't wait for her to go gluten-free to see if it helps with her constipation and inflammation. But we still need to get over the hurdle of the endoscopy. And I'm so scared of there being complications

I was hoping for any tips or words of encouragement from parents who have had their kids scoped. And also for any advice on how to explain to their toddlers that they can't everything their friends eat anymore. I find it especially challenging because she's never. Omplained of stomachaches so I can't make the connection for her.

I guess this is more of an introduction post than anything else because I expect to be visiting this board quite frequently in the future. So happy to have found this community!
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#2 1974girl

 
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Posted 30 June 2012 - 05:02 PM

((((((HUGS))))) from another mom whose been there. My daughter did the scope this past December. She is 11. Honestly, it would have been so much easier to find out at 2. She knows what it is like to have sleepovers with pizza and donuts for breakfast. She is having a hard time feeling different. HOWEVER, my friend's son has been gluten free since 2 and he is fine with it now at 4. (It will get harder I am sure as a preteen) But he thinks it is normal for his parents to take his food everywhere because he doesn't know any different. They just tell him that some food will make him sick. Your child will eat whatever you give her so you will be the one having to adjust to the cooking and finding stuff. There is almost nothing we can find that doesn't have a gluten-free alternative. They eat buttered corn noodles just as much as the wheat kind. Coco Pebbles and Fruity Pebbles are fine. I know this is horrible parenting but I told my daughter that a world where she can still eat Doritos, M&Ms, and Reeces is not that bad. But on another note: Please make sure they take enough biopsies and get some from the duodenal bulb. My youngest was scoped for generic tummy trouble once and they took 1 biopsy. It was normal. When her big sis was diagnosed with celiac 9 months later, the doc admitted that he didn't take enough of the other kid if he was going to look for celiac. I am sure your doctor will but I would make sure!
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#3 AGH2010

 
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Posted 30 June 2012 - 09:17 PM

Thanks for your words of encouragement. I should be grateful that they caught it so early. But still feels overwhelming - and we havent even gone gluten-free yet! Hope your daughter is doing well!
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#4 Mom2J112903

 
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Posted 01 July 2012 - 06:54 AM

My son had his first scope 2 months shy of 2yrs of age. He will be 9 in November and has had 5 more. He is an old pro at it but honestly it never gets easier on me or my husband. Going gluten-free was EASY at that age though! SO much easier than going gluten-free as an older child or even adult when you KNOW what you are missing out on. Don't push the eating afterwards, the throat can be very sore. Popsicles are her friend :-) Don't let them push you out of the PACU either, make certain she is REALLY awake and has been for a while before they let you go. When my son had to hvae his tonsils and then also during an oral surgery procedure, we were shuffled out WAY too fast and it was a ROUGH recovery for him. Thankfully all of his scopes are done at a Children's hospital and they are FAR better than an out pt facility!

Good luck!
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#5 Awalls

 
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Posted 01 July 2012 - 10:04 AM

I have a 7 year old son who has celiac diease. It has been almost two years now since we found out. The endoscopy went fast so dont worry. I was a nervous reck and I was shocked when they came to me and said they were done. Praying for you!!
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#6 AGH2010

 
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Posted 01 July 2012 - 10:09 AM

Oh wow, I didn't realize it would be an ongoing process with more scopes in her future. I'm mainly concerned with how she will handle the anesthesia. Hopefully they won't push us out too quickly. How long does the process usually last for you from the time you guys arrive until the time you leave? (I know it's probable different for everyone). Unfortunately I wasn't able to find anyone within our insurance network who could do it at Children's but it will be done at a good hospital. Our GI assured us that the anesthesiologist was good.

Thanks for the tip about popsicles!
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#7 Sesara

 
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Posted 01 July 2012 - 10:55 AM

Oh wow, I didn't realize it would be an ongoing process with more scopes in her future. I'm mainly concerned with how she will handle the anesthesia. Hopefully they won't push us out too quickly. How long does the process usually last for you from the time you guys arrive until the time you leave? (I know it's probable different for everyone). Unfortunately I wasn't able to find anyone within our insurance network who could do it at Children's but it will be done at a good hospital. Our GI assured us that the anesthesiologist was good.

Thanks for the tip about popsicles!


I think it very much depends on the child and the ability to get a diagnosis, as well as if there are other symptoms that could mean other problems, as to how many scopes they will need. My DS ended up with an inconclusive biopsy (although his bloodwork was also negative, and those two things often go hand in hand), so we may have to re-scope after some time on a gluten-free diet to see if his elevated lymphocytes and acid reflux damage they saw have repaired themselves. Kids who have other issues, such as eosiniphilic esophagitis, which is related to Celiac, also have to have more scopes.

That said, DS is 22 months, and while I was not impressed with the hospital policies at our Children's hospital, which required that we stay in the waiting area while he was sedated, and that they didn't get us until he had fully awakened, they did a good job of making sure he was recovering well, and we didn't even have sore throat issues too much - he was devouring food within an hour and a half of getting out of the hospital. I think the trauma of being separated from us was the worst of his post-endoscopy complications, as he was clingy and tantrum-y for several days afterwards.
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#8 Ollie's Mom

 
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Posted 01 July 2012 - 04:28 PM

My DS didn't have an endoscopy (we have him gluten-free because I react to it and he seemed to as well) but he did have anaesthetic at 16 mos to have tubes put in his ears... he was groggy and cranky afterwards but eating and playing like normal within about 4 hrs.

The hospital kept him in recovery for about 45 minutes then we had to stay in peds till he had had a certain volume of liquid (forget how much) and the peds nurse gave the OK. I think that took about another hour or so.

Good luck and let us know how it goes.
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#9 Mom2J112903

 
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Posted 01 July 2012 - 05:02 PM

My son has numerous GI issues which lead to the multiple scopes and other procedures thru the years.

For us we are there by 6-8am (depending on how old he has been) and never out of there before 2p. Usually it has been closer to dinner time before we are headed out. He is usually in the PACU for 30min or more before we can even go see him. He just has a hard time waking up and is a puker, so they have to watch him a bit closer.

Is your GI not affiliated with a Children's Hospital? We have always used a pediatric GI whom is affliated with a Children's Hospital.
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#10 ryebaby0

 
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Posted 07 July 2012 - 07:27 PM

The scope is scarier for you than her. The biggest thing is for you to be calm. Completely calm. At 2, she's not gonna understand a lot and she might not like all these strangers bugging her. Bring things to distract her (I used to bring Pokemon cards and we'd get engrossed in unwrapping them and seeing what we got). Stay calm. The scope itself is pretty unremarkable and routine from a medical point of view. They'll have you sign a bunch of scary stuff but try to not worry. If this is her first sedation, she may come out of it yelling --- that's a weird thing kids do the first time, also, sometimes they throw up. The doctors/nurses will be expecting that sort of thing. Remember that hospital time is very slowwwwwwwww so just make an adventure of it. Distract, distract, distract.

She'll be groggy and sleepy. That's a good thing. Don't let her have anything to eat or drink prior to the scope within whatever guidelines they give you -- usually 12 hours for us. Don't try to bend the rules. She's not going to remember very much, if anything, about the day.

Good luck, and be well. My son is now almost 19 and hasn't had a scope in years. He's a happy, healthy, well-adjusted and well-liked person who went to lots of parties, lots of trips, and was never once seriously teased about his celiac status. Your daughter will be fine, and so will you. ((hugs)) to you both
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Success is never final and failure never fatal. It's courage that counts -George Tilton

#11 Lfrost

 
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Posted 07 July 2012 - 10:27 PM

I was hoping for any tips or words of encouragement from parents who have had their kids scoped. And also for any advice on how to explain to their toddlers that they can't everything their friends eat anymore. I find it especially challenging because she's never. Omplained of stomachaches so I can't make the connection for her.

We recently ad to go wheat, egg, milk, soy, peanut, and fish free for my 4 year old son because of his positive test for allergies. He has always had constipation and he also never complained of stomachaches.

Honestly, cutting these foods out of his diet was harder on me than on him. I think I grieved for him. I told him it would help so his poops wouldn't be stuck anymore and he was good with that. He asks us now 'is this gluten free?' and won't eat it unless it is. He also now says 'gluten hurts my tummies' even though he had never complained of stomachaches (I think his stomach really must have hurt and he never told us).

I also teach 4th grade and this year I had a boy with celiac in my class. The other kids were so supportive of him. Parents would call me before bringing in snacks because their child wanted to make sure it was something this boy could eat. I also kept a 'snack basket' of things like rice krispie treats or Cheetos in case there was a surprise treat brought in by a student.

She is going to do great. I hope that you guys can find some answers and get her feeling better! <<<<<<<HUGS>>>>>>>>
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#12 beebs

 
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Posted 07 July 2012 - 11:50 PM

Two of my DS' have had endo's. One was 18 months at the time the other was 4. The one who was four is going to start a gluten challenge in 2 months and then have another endo, I am far more concerned about the eating gluten part that the endo. It is hard to watch your kids have one, but it was over so quickly and they both just came out of it and were completely back to normal so quickly. It was way less stress than I thought it was going to be. Does that make sense?
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#13 AGH2010

 
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Posted 10 July 2012 - 01:01 PM

Thank you to all of you who have responded to my original post! After reading some of your posts, I realized that there was the chance that I'd be separated from my daughter before she was sedated. My first GI had assured me that I'd get to stay with her so I didn't even think to ask the second GI, who was going to be performing the endoscopy. When I called to confirm that I'd get to stay with her, I was told that I wouldn't be so I decided to seek out yet another GI. She's in such a sensitive stage right now in terms of separation anxiety that I just couldn't bring myself to hand her off to some strangers in a hospital. We're seeing our new GI next week. He's part of the UCLA group and the receptionist there assured me that I'd get to stay with her until she was sedated. My friend's son also had surgery at UCLA recently and told me she got to hold him until he was out.

So that's where we are at... Hoping I like the new GI. I wasn't a fan of the old one anyway so it was probably meant to be (especially because I found out last minute that our insurance would not cover pathology at the previous hospital but will cover it at UCLA).

Thanks for the words of encouragement, everybody!
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#14 Sesara

 
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Posted 10 July 2012 - 06:33 PM

Thank you to all of you who have responded to my original post! After reading some of your posts, I realized that there was the chance that I'd be separated from my daughter before she was sedated. My first GI had assured me that I'd get to stay with her so I didn't even think to ask the second GI, who was going to be performing the endoscopy. When I called to confirm that I'd get to stay with her, I was told that I wouldn't be so I decided to seek out yet another GI. She's in such a sensitive stage right now in terms of separation anxiety that I just couldn't bring myself to hand her off to some strangers in a hospital. We're seeing our new GI next week. He's part of the UCLA group and the receptionist there assured me that I'd get to stay with her until she was sedated. My friend's son also had surgery at UCLA recently and told me she got to hold him until he was out.

So that's where we are at... Hoping I like the new GI. I wasn't a fan of the old one anyway so it was probably meant to be (especially because I found out last minute that our insurance would not cover pathology at the previous hospital but will cover it at UCLA).

Thanks for the words of encouragement, everybody!


I'm so happy that you found that out. I was so unhappy with our experience, I would never wish it on anyone else if there was any other solution.
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