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Bracing For The Endoscopy
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Well, my 16 month old daughter is having her scope on Friday morning. While waiting to see the GI, we had more allergy testing done and found in addition to the off the charts milk allergy, the whole egg and egg whites are off the charts as well. The ped GI noted that her gliadin was low but the levels that were high (I wasn't scribbling fast enough) were high in 25% of the population, so he wasn't convinced of celiac disease based on that and even after having seen my daughter in person. We have our scope in a little more than 24 hours. I just found out that they don't allow parents to accompany, so I'm a little bit sad about that. Maybe it's for the best, though. I forgot to ask about the amnesiac. My daughter has major anxiety just being in the same room as other people, so I know it's going to be a long day for her.

Question - do they have to look for celiac disease specifically or will they know it when they see it? Anyone know if the same goes for things like eos/ee?

I don't know whether or not to hope they find something. It would sure be nice to figure out what's been causing the failure to thrive as well as her irritability, etc.

For those of you that have gone down this road already, any tips, advice, questions or subjections I should bring up with the GI?

Thanks much!

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If your daughters GI doc is checking for celiac disease he will do biopsies of the small intestine during the scope. A microscopic examination of the biopsies are necessary for the diagnosis of celiac disease (If the villi, which line the small intestine, appear flattened or damaged then they will most likely diagnose celiac disease). The villi may appear damaged by visual examination with the scope camera but it isn't enough to make a diagnosis. Right after my scope my GI doc said something like "it looks suspicious". But I was also partially sedated at the time.... :unsure:

For questions to ask the GI doc.....

-I'd ask if he is doing multiple biopsies of the small intestine (This is important since some parts of the intestine may appear fine while others are damaged).

- If your daughter has a choice (like I did) to be sedated or not, choose sedation for her! Trust me on this one. I had partial sedation for mine. The scope wasn't painful but extremely uncomfortable, and I gagged through most of the procedure. I'm assuming they would give complete sedation to a small child, but you never know.

- I would ask when to expect results and if he could go over them with you.

- I would also ask when you could start a gluten free diet with your daughter (If you want to try it). I asked and I started mine the day of the scope!

I wish your daughter luck on the scope! She'll do fine :)

-Carrie

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Hi! My daughter had a colonoscopy when she was 26 months old. She was extremely anxious about being in the hospital with all the medical staff. They gave her some versed orally, which completely calmed her. (Actually, they gave it to me to give to her so she wouldn't be afraid.) She just watched as they inserted the iv. NO crying. NO anxiety. My husband and I stayed with her while she was put under anesthesia. That was definitely the hardest part. Then we had to leave. The procedure was very quick, though she didn't have an upper gi done at the same time. She had a rough time coming out of the anesthesia, crying for about an hour straight. But, after that, she was back to her old self. I'm sure it's a lot harder on the parents than the child, especially if they can give her something to calm her a bit. The versed worked great!

Good luck. It will be over before you know it!

Sue

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My daughter had ear tube surgery at a similar age. Anything that involves putting a small child under is scary. For us, the surgery was very scary for the parents but not so bad for her. They let me hold her until she passed out, which helped her but made me feel terrible.

My suggestion would be to ask if you can be present immediately after the procedure for the recovery. If she is very upset by strangers this may make waking up easier. Also see if you can bring a favorite baby doll or toy to comfort her while being put under and during recovery. It seemed to help us.

It may make you feel better to know that however she reacts to the procedure, due to her age she will very likely remember NOTHING from the day.

Good luck!

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Wishing you and your little one good luck.My 15month old son's Endo and Sigmod is on Tues the 7th.I know they are taking 6 pieces for the biopsy and he will be sedated.The GI doc will tell us if he saw anything after the procedure as for the Biopsy results they will come back for us in less then 1wk.Take Care!

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Thanks for all the advice and support. In my logical mind I know it's a pretty quick, common procedure that carries few risks, but as a mom...well, what can I say...I'm a softy in that area! I know she'll be fine.

For the record, we are going to be doing a biopsy (will ask how many samples). I was told by the nurse that the sedation will be partial but deep. Not my first desire, but considering that I don't believe my daughter has been put under before (she was in the NICU at birth) it may be best to forgo general anesthesia unless it's totally necessary.

Wish us luck tomorrow morning. I'll post an update when things settle back down.

Thanks again for everything!

-Jen

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Wishing you and your little one good luck.My 15month old son's Endo and Sigmod is on Tues the 7th.I know they are taking 6 pieces for the biopsy and he will be sedated.The GI doc will tell us if he saw anything after the procedure as for the Biopsy results they will come back for us in less then 1wk.Take Care!

Just wanted to add that I wish you luck as well next week. I hope it goes well and they find the answers you are looking for.

-Jen

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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