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I'm So Nervous About Ds's Endoscopy!


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10 replies to this topic

#1 hmseyer21

 
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Posted 04 October 2007 - 08:18 PM

My son will be 2 next week, and on Monday he is having an endoscopy. I am a ball of nerves!! This summer he developed pneumonia after hernia repair surgery and was hospitalized. They think it had to do with aspirating and anesthesia, so I am so scared. I have been crying off and on because I know he should have it done, but at the same time I'm really nervous that he'll have another reaction. He's been through SO much in his little life, I feel like just taking him and running away from all of this, but that is not realistic. I literally could write a book on all his health challenges, it's overwhelming. My heart hurts for him, and all that he has been through.

At first I didn't really want to do the endoscopy because of the anesthesia, but after researching and talking to the doctor, I feel like it's the best way to get a good look at why he is so small and has digestive issues. I'm so torn because I'm scared, and at the same time I know it's a short procedure, but if something happens to him, I will be devestated. I don't want him to go through that again, and part of me wants to say forget it, but my DH is telling me it's normal to be scared, but that he will be fine.

Please help calm my fears about this procedure, any comfort you could offer would be greatly appreciated, I am a MESS! I feel like our battle is never over, and I am truly just overwhelmed.
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#2 hmseyer21

 
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Posted 05 October 2007 - 10:26 AM

I couldn't find this thread, so I posted to try to bump it up.
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#3 happygirl

 
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Posted 05 October 2007 - 11:16 AM

Your post hadn't been pinned by a moderator, which is why you had trouble finding it. You can always click on your own name "logged in as: " and find your posts that way. It has now been pinned.
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#4 cruelshoes

 
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Posted 05 October 2007 - 11:21 AM

We had an endoscopy on my son when he was 6. Honestly - it will be harder on you than it is on him. He was not able to eat anything after midnight, and we got to the hospital at 6 am for a 7 am appointment. They put him out with laughing gas, and then put in the IV while he was under. He freaked out a little from the feeling of the laughing gas, but it was only for a few seconds until he was out. They offered us something to relax him beforehand, but we didn't think he needed it. If I had it to do over again, I would have taken them up on it. He got to choose a scent to put in his mask - he chose root beer. It was all done in an hour or so, and we were home before noon. He doesn't remember anything about the procedure itself because of the amnesia effect of the sedation.

I am a big proponent of getting the endoscopy to get a good diagnosis. The pictures we have of his intestines tell the story for us. My family/in-laws were very resistant to making him gluten-free until they saw the pictures. Even though he had no symptoms, the damage to his intestines was very clear.

Not really a big deal for us. Hope this helps put your mind at ease a little.
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-Colleen
Dx 8/05 via bloodwork and biopsy (total villous atrophy)
13-year old son Dx 11/05 via bloodwork and biopsy
Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

#5 hmseyer21

 
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Posted 05 October 2007 - 01:57 PM

We had an endoscopy on my son when he was 6. Honestly - it will be harder on you than it is on him. He was not able to eat anything after midnight, and we got to the hospital at 6 am for a 7 am appointment. They put him out with laughing gas, and then put in the IV while he was under. He freaked out a little from the feeling of the laughing gas, but it was only for a few seconds until he was out. They offered us something to relax him beforehand, but we didn't think he needed it. If I had it to do over again, I would have taken them up on it. He got to choose a scent to put in his mask - he chose root beer. It was all done in an hour or so, and we were home before noon. He doesn't remember anything about the procedure itself because of the amnesia effect of the sedation.

I am a big proponent of getting the endoscopy to get a good diagnosis. The pictures we have of his intestines tell the story for us. My family/in-laws were very resistant to making him gluten-free until they saw the pictures. Even though he had no symptoms, the damage to his intestines was very clear.

Not really a big deal for us. Hope this helps put your mind at ease a little.



Thanks, I am preggers so I think it is making me even more emotional!

He can't have laughing gas because my family has a malignant hypothermia history and he had a reaction to anesthesia this summer, so I'm mostly nervous about that.

I agree that it is the best way to diagnose problems, so I am sure I will go through with it, I just wish there weren't other issues involved. If I thought that celiac was the only problem for sure I'd just change his diet. But seeing that he has multiple health issues, I feel like it might be wise to do so. I just hope he doesn't have another reaction to anesthesia, it was so scary last time.

Thanks again.
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#6 Fiddle-Faddle

 
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Posted 05 October 2007 - 05:29 PM

Endoscopies are NOT accurate in children under 6, based on what I have read on this board!

Also, endoscopies are invasive and risky. ANY procedure involving anesthesia for toddlers carries a fair amount of risk.

WHY is he having an endoscopy? If it is to rule out celiac, then I would say that the gluten-free diet is a far more accurate diagnostic tool than an endoscopy. But the doctors don't make any $$ from the gluten-free diet, so they rarely recommend it. They make thousands on each endoscopy, though.

I have had 2 endoscopies myself--with permanently damaged vocal chords as the result of the second. My son had open-heart surgery when he was 2, and even with that, the doctors didn't tell me what the risks were. They never TELL you that he could die on the table--but it IS a risk. When I asked about risks, they only mentioned the possibility of infection--that was it. As it turned out, he survived the operation, but had major developmental regression and had to totally relearn many things, including speech. Afterwards, they said, "Well, what did you expect?" as though I should have known that that was a risk. :ph34r:

I'm not saying there is never a reason for endoscopy--but you have options if all they want to look for is villi damage!

There have been many threads about this on this board, and much disagreement. Many people do feel that it is best to follow the current medical protocol and use the bopsy as the gold standard. But the most recent thinking does seem to be that dietary response is a valid diagnosis and perhaps the most accurate.

There is also Enterolab, which analyzes stool samples specifically for celiac, and seems to have a very high accuracy rate. Many people here have gone that route, and I don't recall having read anything from anyone here who used them.
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#7 Fiddle-Faddle

 
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Posted 05 October 2007 - 05:32 PM

This thread might have some helpful info for youy: http://www.glutenfre...s...c=39000&hl=
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#8 ravenwoodglass

 
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Posted 06 October 2007 - 05:27 AM

I agree totally about with Fiddle Faddle on this one. Personally I would put him on the diet strictly for 6 months and then if I saw no improvement I would reconsider. You have mentioned, I think, that you plan on putting him on the diet no matter what the results of the test show. IMHO you should do the diet first then scope if needed. If you do decide to risk the scope on him make absolutely sure that there is a board certified anesthesiologist present at the procedure, not just in the building. During my scope there was one in the building but the doctor did the anesthesia himself without him present. The outcome was that I was not under during the procedure, the doctor did not even wait for the meds to take effect before he began. I was very scared to begin with and it was a nightmare it took months to get over. In the return visit he kept saying I was out, repeatedly unti I repeated everything he said almost word for word. You young son will not be able to tell you if this happens to him so be sure a certified anesthesiologist is there. They are trained to tell when the drugs take effect and also with methods to counteract any adverse effects to breathing etc if they should occur.
What ever you decide in respect to the endo I hope everything goes well and the diet when you finally do it for him helps his problems.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 hmseyer21

 
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Posted 07 October 2007 - 09:29 AM

That is not the only thing he is looking for, that is just one possibility. I think he definitely has something going on, but I don't know enough about every malabsorption disease to know if he has the same symptoms as another malabsorption disease. Celiac was one possibility, so that is why I decided to have the test. Am I still nervous, YES! My DH thinks we should do it, and he is very practical and listens to my concerns, so I am also letting him help decide this.

I know there are risks, and we have been through this 4 times with past procdures and surgeries. I know it's natural to be scared, but part of me feels like taking a risk not to do it could also be a mistake. If I knew for a fact that he had celiac, and that was all the problems he's ever faced, then I wouldn't hesitate to change his diet and wait 6 months. But considering everything that has gone on since his birth, this may provide answers and I don't want to wait if there is something I can find out this week. Best case scenario, it's celiacs, but there are other much more severe possibilities it also could be and I don't think I should risk not knowing. So I am going to have the procedure done and just pray and trust God to protect him. That's all I can do for now.

Thanks for the response and information, it is very valuable and I appreciate your concerns. I will let you know how everything turns out.
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#10 ravenwoodglass

 
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Posted 08 October 2007 - 03:50 AM

That is not the only thing he is looking for, that is just one possibility. I think he definitely has something going on, but I don't know enough about every malabsorption disease to know if he has the same symptoms as another malabsorption disease. Celiac was one possibility, so that is why I decided to have the test. Am I still nervous, YES! My DH thinks we should do it, and he is very practical and listens to my concerns, so I am also letting him help decide this.

I know there are risks, and we have been through this 4 times with past procdures and surgeries. I know it's natural to be scared, but part of me feels like taking a risk not to do it could also be a mistake. If I knew for a fact that he had celiac, and that was all the problems he's ever faced, then I wouldn't hesitate to change his diet and wait 6 months. But considering everything that has gone on since his birth, this may provide answers and I don't want to wait if there is something I can find out this week. Best case scenario, it's celiacs, but there are other much more severe possibilities it also could be and I don't think I should risk not knowing. So I am going to have the procedure done and just pray and trust God to protect him. That's all I can do for now.

Thanks for the response and information, it is very valuable and I appreciate your concerns. I will let you know how everything turns out.



Please do let us know how everything goes, most folks get through the procedure with no problems at all and you will have many here adding positive thoughts and prayers for your son and family. It is so hard to have a young one who is ill, many of us have been there. We always worry when our children are under anesthesia, my DD went through 5 ear surgerys before the age of 4 so I know the feeling of pacing the waiting room. You are doing everything you can for him and that is the important thing. You have mentioned that you will be doing a dietary trial for him no matter what the outcome of the endo, which is a very smart move on your part as so often damage is missed in these little folks. I am sending prayers and good thoughts your way, both for the endo itself and for the response to the diet afterwards. I hate to say that I hope anyone has celiac but with all the problems your DS has I am hoping that a diet change will be the answer and not any of the other nasty possibilities.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 Ridgewalker

 
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Posted 08 October 2007 - 03:57 AM

Good luck today! Give us an update when you get a chance.

-Sarah
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-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007
--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.
--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.
--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.




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