Re: Re: gastroscopy/colonoscopy

[Guest guest]

I too have gilberts syndrome which NHS see as harmless.  I understand there is thought to be a link of mums with gilberts and asd children.  There was an article about this is autism file magazine in 2010.I feel the gilberts is connected to a sulphation problem now I understand which pathways are problematic for my kids.  This also fits with the no paracetamol.  Rosemary Waring used paracetamol in her sulphation research to see if it can be cleared efficiently in asd.  The outcome was that there was only 20% clearance as opposed to 80% in non asd controls which means the paracetamol can easily reach toxic levels.

When DS was a baby his face used to puff up with calpol.  Initially we thought it was the additives but later read that it was fluid retention as the body tries to dilute the paracetamol to prevent it been toxic.  

If only mainstream would except that parents are the experts in their own children.BWAlison R

 

Do they film the inside the intestines during the procedure? If so ask for a copy. What may seam " normal " to some doctors, isn't normal to other specialists. My friend's dd had 2 EEG's and for the NHS consultant they were normal- specialists she saw in Italy told her that her dd has a seizure disorder not Autism!

I have Gilbert's syndrome which means that I can not process paracetamol and was told in Poland that I should not ever take it, NHS sees this syndrome as harmless and paracetamol is fine in normal doses! I would write a complaint. I hope your son is better soon.

Kasia

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> eddie had this procedure yesterday.. after 2 days of bowel prep - diet and drugs - it seems his bowel was still full! i had no idea this has been going on as he has massive poos everyday at least twice.

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> nothing obvious showed up according to the consultant paed gastro, which doesn't suggest why he has long, thin poos somedays and regular posturing and stomach upset. i'm pretty disappointed. although he has taken numerous biopsies for further testing.

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> anyone else had experience with this?

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> they also gave him paracetemol in theatre despite it being written everywhere that he wasn't to have it. it was written on his checklist, nursing admission, drug chart, anaesthetic chart and the literature i gave them in big bold letters. i'm gobsmacked at such a basic error. i'm not sure if it was related, but he was up all night, totally hyper. i'm going to write in, so please feel free to let me know if you have any info on this.

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> karenza

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