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Discussion in 'Parents of Children with Type 1' started by KHS22, Feb 11, 2016.

  1. KHS22

    KHS22 Approved members

    Oct 17, 2013
    My little D-daughter (5 years old) has been having quite terrible abdo pain for nearly a year. Celiac bloodwork was negative. We trial some medications, with very little improvement, so now they want to move on to Endoscopy, has been scheduled for March to rule out a number of things including celiac… I'm SUPER nervous about this. I hate the idea of all of it - especially the anaesthesia, and the complications of having diabetes and not being able to eat….

    I'm sure some of you have had this done, for celiac diagnosis…? How did it go?
  2. Cheetah-cub

    Cheetah-cub Approved members

    Feb 18, 2014
    The endoscopy was actually a fairly simple procedure. The procedure was only about 15 minutes long.

    You want to schedule this procedure first thing in the morning, because the patient can not eat anything before the endoscopy.

    Our endo team coordinated this procedure with our GI. Due to T1, my daughter was scheduled as the first patient of the day. Otherwise, fasting is hard on young children if you have an appointment later in the day.

    Also, we run my DD's bg higher that night. She can not go low in the middle of the night, if we had to feed her, we would have to re-schedule. Our endo team lowered our lantus and IC ratio the night before to prevent lows. (We were still on MDI back then.)

    In the hospital, I was allowed in the room with her while she was being administered the anesthesia (holding her hands). She was out within a few minutes. I was ushered out the room, while the doctor performed the procedure. She was out of the operating room in about 15 minutes.

    After the doctor talked to us, we went to see her, she was already awake, and eating an ice pop. My daughter did not experience discomfort from the procedure. After maybe an hour or so for observation, we were allowed to go home. She was a bit tired the rest of the day. By evening time, she was back to herself.

    The doctor called us back with results in about a week or two weeks time.

    Good luck to you guys!
  3. Snowflake

    Snowflake Approved members

    Dec 1, 2013
    I second everything Cheetah Cub said. The preparation for the procedure is a pain in the neck, and you probably won't sleep much the night before, but the procedure itself is pretty simple.

    Of course, consult with your endo and the GI, but you'll probably want to reduce the basal the night before. You want to avoid both highs and lows in the hours before you go in (so simple, right?) For lows, we were allowed to treat with apple juice or other clear liquid up to 3 hours before. As for highs, our children's hospital told us they would reschedule it if her bg was over 300, so we were fine-tuning the temp basal basically all night long.

    Every kids handles these things differently, but my daughter (who was 3 at the time) was REALLY nervous about the anesthesia mask. We asked to have child life specialists come in and talk to her in advance -- they do things like demo the mask with a teddy bear, give stickers, etc. If nothing else, it was a nice distraction that morning.

    The recovery was pretty easy. She was just a little tired that day, and she told us her throat didn't hurt, but we kept her to popsicles and soft foods just to be on the safe side and to baby her a little bit for being so brave.

    Good luck! I hope you get some answers about what's going on with your daughter!
  4. BrendaK

    BrendaK Neonatal Diabetes Registry

    Oct 29, 2005
    My D son has not had an endoscopy but my non D son has had 7 this last year (yes 7). They are very easy (as long as blood sugar is not low). No food after midnight, clear liquids until 5am). Usually an 8am procedure. He doesn't ever feel getting poked. They give him happy gas and put an iv in after he's asleep. He can have juice or Popsicles as soon as he wakes up. We are usually home by noon, he takes a nap and is just fine by the evening. Good luck. Hope you get some answers.
  5. KHS22

    KHS22 Approved members

    Oct 17, 2013
    Thanks for the reassurance everyone. Glad to hear it has done so smoothly for most of you! Her nighttime BG's have been a bit of a crapshoot recently, so will have to work on that to make sure there are no lows the night of. Its only a couple weeks away! Was surprised it was so quick…

    Our poor kids… I hate that this is just one more thing, when they already deal with so much! :(
  6. Beach bum

    Beach bum Approved members

    Nov 17, 2005
    My daughter (5 at the time) and I have both had them. Best nap I ever had :)

    Our team actually gave us a plan to follow 24 hours prior to avoid any BG issues, and all went well (this was pre-CGM). One thing I would say is insist that you are in the recovery room the minute she gets back. My daughter woke when they tested her BG and freaked out. Be a pain in the a** about it, they told us "ya, ya, we will get you" and then they got sidetracked.

    Have soft foods ready for her in the car (we used applesauce) as her throat will be a little scratchy. Ours were both for Celiac and both, fortunately, for us came back negative (which is why we had to have them, blood tests weren't giving clear pic). If it is Celiac, it does stink, but I have to say in the 10 years since we had the testing, so much has changed for the better when it comes to Celiac. There are many here who will be able to give you helpful info.

    Best of luck, sending good thoughts your way!
  7. Nicole N

    Nicole N Approved members

    Feb 18, 2013
    My son had the procedure approximately 1 1/2 years ago. It was exactly as the others have described. Yes, he has Celiac now and it does add another layer of complexity to life. I am tired of both diseases, but it would be much easier to have Celiac than diabetes.
    Take care!

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