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Discussing Endoscopic Procedure With 7 Year Old

jsmasudek

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jsmasudek Rookie
jsmasudek
Posted

My seven year old son will be undergoing an endo procedure soon. He had this done 4 years ago when he was diagnosed but does not remember it. Anyone know of any books/pamphlets on explaining this to a child of his age?

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celiac3270 Collaborator
celiac3270
Posted

Be careful about explaining it...to someone of any age it can be scary to know what will actually go on...try not to tell him what goes on technically, but just that he'll be going to the hospital and the doctors will make him go to sleep and then they'll do a test to make sure he's ingesting no gluten (is that way the endo??) and then he'll wake up and go home.

gf4life Enthusiast
gf4life
Posted

It probably wouldn't be a bad thing to let your son know that they will be puting a thin plastic tube down his throat with a tiny camera in it to take pictures. That shouldn't scare him, and he might even think it is cool. My son did!

If it were me I would let him know that it won't hurt, he can still breathe and swallow while the tube is in his throat and that he will be asleep during it, but that the tube might rub on his throat a little bit and if it is a little sore after he wakes up that you can give him some medicine that can help it not be sore.

My kids are pretty brave I guess, but I also believe that they need to know at least some of the details of what is going to happen to them during any medical procedure, from routine tests, more invasive tests like MRI's, CT scans, Endoscopy and Colonoscopy exams (all of which at least one of my kids have had) and even surgeries (two had their tonsils out by 7 years old and the other has had 2 sinus surgeries, the first at 7 years old). I feel that the more aware they are of what is going to happen to them, then the less scared they are. I do NOT go into extreme detail and I don't tell them the risks of complications, just a basic description of the procedure and how they might feel afterwards.

You should decide what is best for your son, based on you knowledge of how he reacts to things like this. You know your son better than anyone else.

God bless,

Mariann

Guest nini
Guest nini
Posted

may I ask why he's going to have another one after 4 years?

Hennessey Rookie
Hennessey
Posted
My seven year old son will be undergoing an endo procedure soon.  He had this done 4 years ago when he was diagnosed but does not remember it.  Anyone know of any books/pamphlets on explaining this to a child of his age?

<{POST_SNAPBACK}>

I had it done a couple of months ago to widen my esophagus, unrelated to celiac, and I didn't recall anything. I think if it were my child I would just say the doctor is going to take a peek in your mouth, serioulsy by the time the medication kicks in he won't even remember a thing. I don't have any recolection of any tube in my throat at all. I was just laying on my side and that was it.....your son will be fine, I don't know if you can be in the room, if you can that would be great and I hope you can be, but seriously once they make him groggy he won't even remember a thing....but i know just the getting him there is the tough part, I have a 10, 3 and 1 yr old, all have been hospitalized for one thing or another. It's not easy, but he will be ok and you will be ok too.

Hennessey Rookie
Hennessey
Posted
I had it done a couple of months ago to widen my esophagus, unrelated to celiac, and I didn't recall anything.  I think if it were my child I would just say the doctor is going to take a peek in your mouth, serioulsy by the time the medication kicks in he won't even remember a thing.  I don't have any recolection of any tube in my throat at all.  I was just laying on my side and that was it.....your son will be fine, I don't know if you can be in the room, if you can that would be great and I hope you can be, but seriously once they make him groggy he won't even remember a thing....but i know just the getting him there is the tough part, I have a 10, 3 and 1 yr old, all have been hospitalized for one thing or another.  It's not easy, but he will be ok and you will be ok too.

<{POST_SNAPBACK}>

I just had to add that you have to take into consideration he is 7, no matter what other advice you may get from well meaning people, he is just 7, a baby. The less said the best...take it from a teacher, special ed, preschool, elementary, mom...and you know your child best....7yr old doesn't need all that technical information....again my advice say as little as possible to keep him comfortable and once they make him feel comfortable the rest in in the hands of the specialist, and it will be about 10-15 minutes max that he won't even remember, best to keep it simple. :D

jsmasudek Rookie
jsmasudek
Posted
  • Author
may I ask why he's going to have another one after 4 years?

<{POST_SNAPBACK}>

Thanks to all who have replied. Matthew is a very curious type of boy and will need some inormation. As for why the test, his original test should some results not typical with Celiac. There is some concern that he may have something else going on as well as he continues to have sme stomach pain and recurrent soft bowel movement. His movements have never been what I would consider normal.

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      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
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      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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