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007paul007

Catch 22 situation

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Well it appears we are in a catch 22 situation regarding my son, for those that don't know , my son is 17 years old and is at the severe end of the autism spectrum, just over a year ago he was diagnosed with epilepsy after he had a couple of fits for the first time. He also suffers from what they think is Irratible Bowel syndrome, we have tried to to take him into hospital for an endscopy ( camera up the backside ), but when we giv ehim the medication to drain his bowels , he always has a siezure. Nearly everytime he has had a fit , we have found that he has the runs 9/10 before it, don't know if this is just a coincidence or whether there is a connection, but it seems we cannot solve one problem without creating another. Any ideas ?

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Guest flutter

does he have to have the endoscopy?

can they not try and see if it irritble bowel with meds 1st? there are ways to deal with it

i have never had one myself but know lots who have :( and i have persistanlty said i not having one and a doc would have to give me a darned good reason why they would want to do that to my dd

sorry that was way too blunt, cant explain it sorry

Edited by flutter

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I think this is a hard one. When they thought i had IBS they said to try cutting out foods containing wheat and glutan and to cut back on dairy foods i also had pills to take. Have you tried this.I think if it was me i'd go to the GP as there must be other things to try.

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The thing is that the endscopy was to find out for definate if it was IBS, sometimes he is constipated and sometimes he has loose bowel movement, and its during those times that he seems to fit which he always has when he comes out of sleep. They were going to sedate my son as well being of problems , but I wonder if when he has he loose bowel movement that his epilepsy med is not so active then .

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Hi 007paul007. Posted this message once but it disappeared, so apologies if it comes up twice. My 8 year old daughter has epilepsy she has had this for just over 4 years now. I have noticed that if she has a stomach bug and is sick and has the'runs' she is more prone to seizures. The doctor did say that this is because the medication was not being absorbed properly. There must be something else the doctors can suggest for your son as obviously it is really important to try and minimize the number of seizures. Sorry can't offer anything productive.

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I was told I had irritable bowel syndrome at age 17.Spent 23 years believing this until prior to diagnosis of AS,I paid for a gluten intolerance test(done at Sunderland Uni,autism research unit) which came back positive.Since removal of gluten from diet the change has been remarkable.No stomach pain,discomfort,irregular movements,etc.

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I have IBS and hada barium meal when i was around 17. I take anti-spasmodic medications when i have aflare up. other than that i am meant to cut out fatty food etc, but i tend to find i have it bad when i am stressed badly.

Maybe you could suggest this paul? The barium meal, gotta be less intrusive :(

I hope you can sort this out for your sons sake. >:D<<'>

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Thansk kirstie, I know what a barium meal is I had to have one once and nearly passed, I think it would be more stressful for my son he would not co operate with them very much, Imean the only way the hospital could take a blood test off him once, whe he was rushed in because of a fit was to do it while he was fitting. He had to have a MMr scan while he was sleepy from the diazpam they gave him for a fit. He is at the severe end of the autism spectrum , no speech etc and does get very stressed when going into places like a hospital, even the GP who he has got to know and is very caring and understanding with him , can often stress him out. I wonder whether he picks up on us parents worrying about him and that he has to go to the hospital and that stresses him more ? I don't know .

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Yeah it's possible he senses your worry. Also my son is needle phobic which as far as i can gather is pretty common in asd children so he gets really freaked out if he goes to the doctor, would your son be able to express any fears such as needles?

It sounds as though you are having a very stressful time thinking about how best to help your boy. >:D<<'> Have a couple of these >:D<<'> >:D<<'> I wish i could be of more help,

Take care,

Kirstie.

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could they do it the other way, a gastroscopy (down the mouth) they can get to a large amount of the bowel this way and they can knock you out for this. They can also do a barium meal or barium enema. These involve drinking a white "glow in the dark" liquid (which can be mixed with a fav drink) or forcing this liquid up the backside and this is followed by a set of x rays which show up any blockages, swellings, pockets and so on.

 

The other slightly painfull way they can go is to do a colonic irrigation (wash out) followed by colonodcopy (camera up backside)

 

Hope this is some help to you

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Kirstie when ever they go take my son arm or hand to do and injection he just pulls away, I remember once some years ago my son got hold of one of them washing powder capsules with the liquid in and it burst before we could get it off him and it went in his eye. We rushed him up to hospital where a team of 5 nurses and 2 doctors and us could not hold him down to put the stuff in his eyes to wash it out. The doctor decided my son was in enough distress and stopped everything and gave us the medication to give him at home , that was fun, I tell you when we had to insert the medication into his eye I had to sit astride him, holding his arms back while my other half tried to open his eye and put the medication in. If social services had of walked in they most probarbly would of thought we were beating him ! It was the only way to do it at the time.

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