Re: FOR STEPH :was Parasites/FAECAL IMPACTION

[Guest guest]

Hiya

The first time was diagnosed with impaction was at the Royal Free. We asked to be referred to the Royal Free (Wakefields group) not long after she was diagnosed. We had just moved back from the Middle East and I met a few mums in Glasgow who had also been there.

They prescribed Picolax which is an oral laxative often used prior to bowel surgery, I believe. We did this every weekend for a few months. When we went back to th RF the impaction (often called blockage, but not a true blockage) hadnt altered, poor soul its pretty vicious treatment as well. She was also taking 20 ml liquid parrafin a day.

We then transferred to the GI specialist at Aberdeen Sick Kids, pretty good guy. He also tried to treat with micolette suppositories for a few months, still no effect.

Then we had a weeks worth of Fischers (adult sized) high enemas, which they taught me how to administer and I did at home, yummy stuff, hope no-one is eating....

This cleared out the bowel, at last, then she had a colonoscopy and endoscopy with a general at the end of that week. Showed some inflammation, nothing significant, but we had been gfcf for around 18 months by then which is amybe why.

So many kids with ASD have these bowel probs that I believe bowel x-rays (if you want them done) should be a satandard part of the diagnosis. Too many parents I have met dont associate their kids bowel probs with their autism (or Heavy Metal Toxicity). This so riles me, it is negligence on the mediacl professions part on a MASSIVE scale.

JMHO

HTH

with love from Caroline (Mrs Angry!!!!), from Aberdeenshire xxx

[Guest guest]

That, s dead interesting, because we have often been offered an endoscopy although not recommended because of the invasive nature, I always thought an X Ray might be worthwhile but was led to believe it isn't an option, so can we demand one?

To rub salt in the wound we lived in North London and that is where was born, he was refered to the Royal Free because he apparently had a flap at the top of his stomach which didn't close properly and they wanted to operate, we were told most kids at around 18 months will have it working by itself without the need of surgery, so being as he was 3 months premature we were too scared to put him through the surgery, we now live in Norwich and have spent yrs trying to get him referred back to the RF, you couldn't make it up!

Vicky

[Guest guest]

Dear Vicky

I dont see why you could not ask for an x-ray....We have had several and the Gastroenterologist has always showed me what they are looking at but I find it really difficult to distinguish the grey areas that are pooh from those which are intestines.

s endoscopy was done under general anaesthetic and it was fine afterwards. I was so determined to have this performed because I knew many families that had problems with partial blockages. I remember reading about one family who came from the US to go to the Royal Free. Not sure what their department is like now there since they have tried to dissociate themselves as much as possible form Wakefield. I am glad that we were ultimately done at ABerdeen because I wouldnt have fancied flying so far afterwards. However, if your child is having bowel problems which are ongoing it is YOUR RIGHT to ahve this investigated. Dont accept the answer ' Oh kids with autism often have bowel probs' that is not a reason, only an excuse for these people to sit back and do nothing.

Bio-med is all very well but if there is a true physiological problem that cannot and should not be overlooked, oh the fights I have had with my daughters professionals, I could write a book.... The last time had problems was about 18 months ago, the paediatrician was a bit slow at sorting it out so I sent her a fax saying if she was not seen that Day, I would be bringing her to A & E with the press there, that got her moving pretty sharpish I can tell you.

Anyway, better stop waffling, must hoover. Byee and Good Luck.

Luv Caroline

xxx

[Guest guest]

Thanks , I remember at the time when endoscopy was suggested, being such a nervous bunny I checked out with some of the internet groups, can't remember which now but biomed anyway, and they said they were unlikely to find the probelm with a standard scope, and at around that time a friend of mine had her son done privately at the Chelsea and Westminster, where this child with the guts from hell was found to have nothing wrong with him and given a clean bill of health!!!!

We also have toyed with the idea of going to the U.S. for treatment and tests but it would be another huge financial commitment and ofcourse getting a boy as profound as with severe behaviour issues to hack it on such a long journey would take some doing.

I know others have managed it but then they may not be as neurotic as me lol.

Vicky

[Guest guest]

Hi Vicky,

We have been down a very similar path with our son Jack. He was seen at the Royal Free with severe constipation when he was 3 (now 9) by both Simon Murch and Wakefield. Blood tests revealed several markers for inflammation and they recommended an endoscopy. We didn't go down this road as they couldn't guarantee a treatment protocol if they found anything (this was during the time they were gathering evidence of LNH and measles in the gut). 6 years down the line we are still having severe gut problems but after thorough research I don't believe there is now any good paediatric gastros in the UK doing the colonoscopy/endoscopy (both are apparently needed to identify problems fully) and I think the only cast iron guarantee of a proper procedure is probably Dr Krigsman in the U.S. We have considered this but would be very expensive and difficult to get our son over there. It is worth watching his presentation which can be found at

http://www.thoughtfulhouse.org/0405-conf-akrigsman.htm

HTH

Re: FOR STEPH :was Parasites/FAECAL IMPACTION

That, s dead interesting, because we have often been offered an endoscopy although not recommended because of the invasive nature, I always thought an X Ray might be worthwhile but was led to believe it isn't an option, so can we demand one?

To rub salt in the wound we lived in North London and that is where was born, he was refered to the Royal Free because he apparently had a flap at the top of his stomach which didn't close properly and they wanted to operate, we were told most kids at around 18 months will have it working by itself without the need of surgery, so being as he was 3 months premature we were too scared to put him through the surgery, we now live in Norwich and have spent yrs trying to get him referred back to the RF, you couldn't make it up!

Vicky

[Guest guest]

Hi - are you in North London? Feel free to email me off list stephanie.scott@...

Alasdair is 5. He was born at the Royal Free.

Steph

Re: FOR STEPH :was Parasites/FAECAL IMPACTION

That, s dead interesting, because we have often been offered an endoscopy although not recommended because of the invasive nature, I always thought an X Ray might be worthwhile but was led to believe it isn't an option, so can we demand one?

To rub salt in the wound we lived in North London and that is where was born, he was refered to the Royal Free because he apparently had a flap at the top of his stomach which didn't close properly and they wanted to operate, we were told most kids at around 18 months will have it working by itself without the need of surgery, so being as he was 3 months premature we were too scared to put him through the surgery, we now live in Norwich and have spent yrs trying to get him referred back to the RF, you couldn't make it up!

Vicky

[Guest guest]

There was a tiny sidebar item in today's Times (main section) about some doctors in Italy developing a new small machine thingy which will be able to examine the bowels in far greater detail than current technology will allow. It is in trials now. We live in hope.

Steph

Re: FOR STEPH :was Parasites/FAECAL IMPACTION

Thanks , I remember at the time when endoscopy was suggested, being such a nervous bunny I checked out with some of the internet groups, can't remember which now but biomed anyway, and they said they were unlikely to find the probelm with a standard scope, and at around that time a friend of mine had her son done privately at the Chelsea and Westminster, where this child with the guts from hell was found to have nothing wrong with him and given a clean bill of health!!!!

We also have toyed with the idea of going to the U.S. for treatment and tests but it would be another huge financial commitment and ofcourse getting a boy as profound as with severe behaviour issues to hack it on such a long journey would take some doing.

I know others have managed it but then they may not be as neurotic as me lol.

Vicky

[Guest guest]

In a message dated 29/09/2005 11:15:22 GMT Daylight Time, stephanie.scott@... writes:

There was a tiny sidebar item in today's Times (main section) about some doctors in Italy developing a new small machine thingy which will be able to examine the bowels in far greater detail than current technology will allow. It is in trials now. We live in hope.

>>>>TURIN - they are doing the one little one you swallow, it takes pictures inside and you catch it when it comes out. Andy W saya don;t worry - they only use them once LOL

MAndi x

[Guest guest]

Hello!

We saw Dr Heard the day before.My son has several tests in

JUne .Accordign to the Doctor Data's comprenesinve stool analysis

with parasitology test,it shows that my son has Candida again and he

have some parasites.

My son had severe gastrointestinal problems in abroad 3 years ago.The

year before he was hospitalized in London for a week and suffered

from the same symptoms.None of the doctors focused on what sort of

bacteria he picked up,it was frustrating.This year he didn't have any

problems but Dr Heard says he is possibly carrying the

parasities .Since his health went down,he never put any weight

on,that was a main concern for me..

DrHeard recommended gave the priority to heal the gut again and

suggested to use Paromomycin-antibiotics for 10 days and I am waiting

for this medicine,this is for clearing the parasities.Then he will be

on a course of Nystatin treatment again until we see in in January.I

don't know how am I going to wait so long?We stopped all supplements

as he was not gaining any goodness from them except having pain in

his stomach...

Thanks to Mandi and the group members to let me know about Dr

Heard.He seems to be very knowledgable and confidence giving.

Nevin