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Allergies and intolerances

Has anyone had experience of an endoscopy?

14 replies

veryworriedme · 30/01/2012 14:12

my almost 4 month old has been diagnosed with a milk allergy but the neocate is not working and so GOSH are undertaking an endoscopy tomorrow (or perhaps checking dd to plan for one). the term used in the letter is gastrointestinal panendoscopy. dd is clearly uncomfortable at the moment and I don't want to increase that ( someone suggested is worst thing you can do if everything is inflamed). should I be worried? What happens exactly?

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veryworriedme · 30/01/2012 21:38

Anyone?

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harbingerofdoom · 30/01/2012 21:43

I'm no doc but my DH has had one. It is very simple. A camera on the end of a tube.

Hope all goes well

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redridingwolf · 30/01/2012 21:43

Hi veryworried - I am probably not much use as ours hasn't happened yet. We are waiting for an endoscopy for DS1 (age 4) for suspected coeliac disease.

As I understand it, from talking to docs, he will be sedated (not a general anaesthetic but so sleepy that he's not fully aware of what's going on and won't remember it). Then a tube with a camera on it will be inserted through his mouth down into his intestine. They look at the intestine and will also take a biopsy (cut off a very small piece of the wall lining for analysis).

It will apparently be a day-case (he'll come home the same day) and will be painless.

I don't know if it is different for a 4month old, but it reassured me. Good luck. Is it being done in a specialist paediatric gastro unit?

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deardear · 30/01/2012 21:43

I have had 3. Will be sedated and won't last long. You will be more worried than she will be. It didn't hurt me and stomach wasn't sore afterwards. Better to have it done and see first hand whats going on.

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OldMotherDismass · 30/01/2012 21:46

DS2 had an upper GI endoscopy at about 2 yo. When he had it done, you are allowed in the aesthesia room whilst they put lo to sleep (this is quite traumatic, just because they count down from 10 and their eyes roll back and they are gone. If like me, you are a control freak, you may want to be there for this, but I know some people prefer to send their dh/dp in instead). However, the actual procedure took about 30-45 mins iirc and then they go to the recovery room to wake up. With very little ones, you are allowed to be there as they regain consiousness so as they are not too distressed.

I will admit, it is not nice, but in the long run, if they find some useful info it will be worth it. In the case of ds2, he is dairy allergic and neocate also made him vomit. He was diagnosed with eosinophilic esophagitis, which made the doctors realise that whilst he was symptomatically similar to a child with reflux, he was not going to respond to reflux medication. Since we have worked out his allergies (we hope!), he has improved significantly.

I should also add, don't be worried though, it is a low risk procedure and they do know what they are doing! My comment that it is "not nice" is from my perspective of the parent waiting for my baby to come out again, rather than from ds2's perspective. He btw was completely unfazed by the whole process, aside from a sore throat for a day or so.

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freefrommum · 31/01/2012 08:58

Our experience is similar to OldMotherDismass. DD (10) had gastroscopy and biopsy last April to diagnose coeliac disease. She was admitted as a day surgery case and had general anaesthetic. Her throat was a bit sore when she woke up but no other lasting symptoms and we went home at teatime. My only warning for you as a parent is if your little one has general anaesthetic please be prepared for the fact that when they are being put under they might thrash about and look very distressed for a minute or so but this is perfectly normal (particularly if they have the gas rather than injection). Nobody warned me and I found that part really frightening and distressing - wish somebody had mentioned it beforehand! The child of course remembers nothing, it's just us parents that are left a bit traumatized! Other than that, it really was fine and definitely worth finding out what the problem was.

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veryworriedme · 31/01/2012 10:18

Thanks so much everyone for responding. Getting a bit nervous but at least some idea now of what to expect (thanks for the thrashing warning freefrommum). I don't even knownif it will be today as the letter is so unclear but then I also am baffled by the diagnosis of "intestinal neuroimmune interactions" (something wrong with tummy?!) and " functional rectal outlet obstruction"(constipation presumably!). Yes redriding is at gt ormond st so should know what they are doing! Just a bit odd that nothing said about whether or not dd can have any milk before. Wish my dh was coming. I made him go in with our ds when he went under general and he came out in tears!

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veryworriedme · 31/01/2012 10:29

Have just googled eosinophilic esophagitis and coeliac disease. Amazing how the symptoms of all these things are so similar so can see how important an endoscopy is. They look quite difficult to deal with, but I guess you just cope don't you....

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redridingwolf · 31/01/2012 14:46

Good luck veryworried, let us know how it goes. You should be getting the best poss treatment at Gt Ormond! We are waiting for an appointment for endoscopy in Leeds. Hoping it will be soon.

I know what you mean about looking to deal with. I am already mentally running through all the issues of going gluten-free. But lots of sources seem to say that the child feels better within a couple of weeks, which would make it all feel worthwhile. I just want to get on with it now, but can't do anything until after the biopsy - have rung doctor today to chase up what's happening with appointment. No reply yet...

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freefrommum · 31/01/2012 16:15

Just wanted to say that dealing with coeliac disease really isn't that difficult and in fact it's getting easier all the time with new labelling legislation and more restaurants offering gluten free options. Not like 30 years ago when all you could get was disgusting bread in a tin from the chemist! Almost all supermarkets have a freefrom section these days with plenty of good gf options.

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veryworriedme · 31/01/2012 17:45

Just got back , they can't do an endoscopy this week as, to quote the dr, dd is "drowning in a sea of snot". he was clearly a bit baffled that the neocate has not been working as he is convinced is an allergy and given there is nothing in it to be allergic to, all a bit odd.
Yes freefrom, apparently I was allergic to milk as a baby and lived off soy sauce or something!

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redridingwolf · 31/01/2012 20:52

that's good to hear freefrom, people keep telling me how hard it's going to be. to be honest, i just want to get the endoscopy done now so we can get on with it. will be calling hospital tomorrow to find out how long the waitlist is.

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tumble8 · 01/02/2012 20:14

sorry Im a bit late , my now 3 year old has had regular upper endoscopies and a few lower for eosinophilic disease.

They are done under general anaesthesia, dont take long, they have a look and take a few minute biopsies to look at the cells present.

If it is a lower one, you will have to give laxatives to clear out before, to allow a clear view.

The first time is always the worst. Hope it goes ok

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redridingwolf · 01/02/2012 21:17

hope you get your appointment soon veryworried we have one next week to talk to the gastroenterologist and hopefully will get an appt for the endoscopy soon afterwards.

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