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Hi! I am new here. My oldest DS (almost 5 years old) had a celiac screen done, which came back positive. This was no surprise, he has been having symptoms pretty much every since he started solids and of course looking back it all makes SO much sense.

Anyway, we met with the G.I. for the first time yesterday and the next step is going to be an endoscopy & biopsy in a couple of weeks.

DS came with us to the appt. and the idea of an endoscopy scared the heck out of him, and I don't blame him, because it would scare the heck out of me too. It will be done under general anesthesia, which he has had before, so he knows that he'll be asleep for the whole thing.

He is still really nervous about it though, so I promised him I would come here and ask if other kids could maybe share their experiences. I think this will help him feel less afraid and hopefully also not like he is the only child that has ever had to do this.

So, I would really appreciate your stories about how the endoscopy was for your child(ren).

TIA!!

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I posted our experience on the forum but can't find it, anyway our experience was very positive.

My DD (6 1/2 yrs old at time) was put under general anesthia and then an IV was put in (less trauma that way) about 50 minutes later she was being wheeled in to recovery. We met her in there while she was woken up, we were able to hug her and be at her side immediately. As soon as she was cooherent they quickly and gently removed the Iv and gave her a popsicle to suck on. We were on our way home within the hour. That day and the next she had a very mild sore throat, also she had very very mild tummy pain that afternoon only. We gave her a few extra popsicles the same day and sent her to school the next day absolutely fine.

It was more trauma for me and my husband than it was for her. I strongly suggest not to mention, IV, or tummy pains at all, but do suggest mentioning the popsicles : ) We did not even tell her she was going to the hospital til the night before and then we let THEM give her a brief over view in the hospital of what was going to happen. This way she had less time to THINK about it. Too bad your DS was in the room they really don't need to hear about details so young.

Overall a good experience considering it had to be done at all.

FYI He won't be able to eat due to anesthia so be prepared to have light snack afterward, nothing heavy as it will upset his belly.

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My DD had hers done as a teen and had no problems with it at all. She had many ear surgerys when she was under 5 and she also had no problems with those. She simply went to sleep and then woke up and came home.

Do be aware that there can be false negative with both blood and biopsies so your child needs to be on the diet no matter what the results of the biopsy are. Some doctors are even skipping the biopsy when the blood tests results are positive. The choice of whether to do a biopsy is yours to make not the doctors as the blood test is diagnostic on it's own.

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We were in the exact same position with our 5 year old about one month ago!

She was nervous too because she remembered having other tests done at the hospital for which she was awake. We stressed that she would be asleep for the whole thing and we didn't describe the procedure to her. No IV was needed. (We were told that it depends on how comfortable the anaesthesiologist is that the G.I. will be quick with the procedure.) We were only separated from her for about 15 minutes and then we were allowed into the recovery/wake-up area as she came out of the anaesthetic. Juice and popsicles were provided. We left the hospital an hour later. She spent the afternoon playing at home and was quite happy.

She mentioned that the roof of her mouth felt "rough/sore" for about a day afterwards, and at that point we explained the procedure to her and she was actually pretty interested in it.

She has been on the diet for a few weeks now and she no longer has the distended belly, bloating, and pain that she had been experiencing for years. Her energy level is much higher too. It's truly amazing to see the difference! I've also chosen to go gluten-free and feel much better for it.

I hope your son is feeling better soon.

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I have a 5 yr old son and a 1 yr old son. My 1 yr old just had his second scope, and my 5 yr old just had his first. It was easy. It WAS more stressful on us parents to put our kids through anything. The one yr old doesn't know what's going on, but the 5 yr old is a different story. We explained to him what would happen in detail...omitting the part about the IV. He was nervous, but ok. He brought his 2 favorite stuffed animals, and the doc took pictures of them with the scope for him. The only problem that we had was when the put the flavored mask on him. He totally freaked out. He was ok with having the mask on, until they put the medicine through. He then said that he couldn't breath, so we had to watch him freak out until he went to sleep...and he remembered. That was excrutiating for me. I wish now that we had explained that the medicine would smell funny, and that it would be ok to breath it...etc. All was good though. We already had some kids books about going to the hospital, and that may have helped.

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I'm not sure why you would need a biopsy, if you already know he is positive from the bloodwork? You do have the right to refuse it, unless you need the positive biopsy for insurance purposes?

About the potential IV and/or further bloodwork. In Canada, one can by a cream over the counter that helps numb the skin before needle sticks. It is called Emla. I'm sure there are similar products in the US.

My son had a hospitalization that required lots of IV's. He has become fearful of needles, so we use Emla to numb the skin and ensure he drinks lots of fluids before the tests. If your child is NPO they won't allow the fluids, but the Emla would take the edge off greatly. You will just need to consult with the person inserting the needle about location for applying the cream.

Good luck,

Monica

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Thanks everyone, it's really good to hear all these experiences. We are not talking about the procedure with my son right now, because it's still a few weeks away (of course, if he starts talking about it we will discuss it with him), but as soon as we do talk about it again I will mention all the positive things that you all wrote :)

Monica, we are in Canada actually, so I will look for the Emla cream. DS had general anesthesia about two weeks ago for a bead that was stuck in his ear ( :lol: ) and that time they only gave him an IV when he was already under... So maybe I will check with the anesthesiologist at our pre-op appt.

As for for the scope, we decided to go ahead with it because we would prefer a diagnosis that is absolutely a 100 %, because it will be a lifelong thing for him it is important to us that we are absolutely sure. But, even if the scope comes back negative we will still take him off gluten.

He was sick again last night and I am pretty sure it's gluten-related. Ugh, I can't wait to go gluten-free for him. We will go gluten-free as soon as he has had the scope and I think I'll bake a big gluten-free cake to celebrate :D

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Thanks everyone, it's really good to hear all these experiences. We are not talking about the procedure with my son right now, because it's still a few weeks away (of course, if he starts talking about it we will discuss it with him), but as soon as we do talk about it again I will mention all the positive things that you all wrote :)

Monica, we are in Canada actually, so I will look for the Emla cream. DS had general anesthesia about two weeks ago for a bead that was stuck in his ear ( :lol: ) and that time they only gave him an IV when he was already under... So maybe I will check with the anesthesiologist at our pre-op appt.

As for for the scope, we decided to go ahead with it because we would prefer a diagnosis that is absolutely a 100 %, because it will be a lifelong thing for him it is important to us that we are absolutely sure. But, even if the scope comes back negative we will still take him off gluten.

He was sick again last night and I am pretty sure it's gluten-related. Ugh, I can't wait to go gluten-free for him. We will go gluten-free as soon as he has had the scope and I think I'll bake a big gluten-free cake to celebrate :D

lol Don't be like me and leave the Emla patches at home! lol My six year old was just diagnosed last month and had both the blood work and scope. I agree it is a life long diet and we wanted 100% confirmation too (and needed that so we could get a doctors note so we could claim all his food :) Don't forget to save your food reciepts)

My son was quite easy going about the whole procedure we had it done in Toronto -North York and the Doctor and nurses were all amazing with him and the other kids in there that day. We had to wait A LONG time in the waiting room the doctor was behind. We just played games and played together and then he was in and out. Again he had a sore throat when he woke up but loved the popsicles. lol He was told to take it easy for a couple days no sports but really he was quite fine the next day.

His biggest consern was the not eating part before hand and we were added quickly to a list for the day, the doctor only did scopes one day a month so he was one of the last ones. He was starving after. lol

He was also pretty amazed and curious when we told him what the doctor did AFTER he woke up. lol But do discuss the basics to prepare him :)

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This has been helpful to read. I wish they had a sedative for the moms . . .

We go in two weeks. My son (just turned 6) is sort of excited to go because he saw Children's Hospital on "Fetch with Ruff Ruffman" (PBS Kid's show) and wants to be in a hospital room where he can dial, "F.O.O.D." on the phone and get jello. We also read "Eating Gluten Free with Emily" which covers the digestive system, blood tests, and (briefly) the endoscopy. That was a couple of months ago so we will probably get it from the library and read it again. If he is positive, we will share the book with his kindergarten class so they understand too. It is a cute book.

Here is a link to the book on Amazon:

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Eating-Gluten-Free-Emily-Children-Disease/dp/1439212260/ref=sr_1_1?ie=UTF8&s=books&qid=1301068592&sr=8-1

Cara

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This has been helpful to read. I wish they had a sedative for the moms . . .

We go in two weeks. Cara

Something that will allow you a restfull sleep and clear mind in the morning is 5 HTP. Find it at your natural health store.

Hope all goes well,

Monica

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