Re: Chris Heard

January 17, 2008

I have a phone consult with him in a couple of weeks. We are

devastated - both Alasdair and I are in the middle of chelation. I

am trying to find someone in the NY or Connecticut area right now, as

we get over there a fair amount. The Speech, Language and Hearing

Centre at Place, which offered the best service in London

for ASD children IMHO, has recently decided to focus solely on

hearing impaired children - so we have lost our two mainstays. I

feel like I am starting over again from scratch. Our ABA person also

left a few months ago to get her teaching qualification -

aaaaaarrrrrgh.

SM

>

> Has anyone got a phone consult with him? It would be good to find

out if he is going it alone.

>

> Re: Heard

>

> Same here Margaret, I also wondered if he was ill, or

maybe even

>

> setting up on his own? Retiring from the practice needn't

necessarily

>

> mean retiring full stop.

>

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January 17, 2008

I have a phone consult with him in a couple of weeks. We are

devastated - both Alasdair and I are in the middle of chelation. I

am trying to find someone in the NY or Connecticut area right now, as

we get over there a fair amount. The Speech, Language and Hearing

Centre at Place, which offered the best service in London

for ASD children IMHO, has recently decided to focus solely on

hearing impaired children - so we have lost our two mainstays. I

feel like I am starting over again from scratch. Our ABA person also

left a few months ago to get her teaching qualification -

aaaaaarrrrrgh.

SM

>

> Has anyone got a phone consult with him? It would be good to find

out if he is going it alone.

>

> Re: Heard

>

> Same here Margaret, I also wondered if he was ill, or

maybe even

>

> setting up on his own? Retiring from the practice needn't

necessarily

>

> mean retiring full stop.

>

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January 17, 2008

Lets hope they find a decent replacement for him. After all they must have been making a fair amount of money for his services.

Jane

Re: Heard> > > > > > > > > > > > > > Same here Margaret, I also wondered if he was ill, or maybe even > > setting up on his own? Retiring from the practice needn't necessarily > > mean retiring full stop.> > > > > > > > > > > > > > > > > > > > > > > > > >

January 18, 2008

yes, can someone in the know give out info on other available options in the uk for biomedical treatment and an idea of their waiting lists.

>>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet in Edinburgh, all will work long distance after 1st consult, Jon comes to you to see child in own surroundings, all are parents of ASD kids, actually Jeans is formerly ASD having recovered

Mandi x

January 18, 2008

Anyone got any feedback about other ~Dr's in the UK ? Or is there a file I should look at with this info?

Re: Heard> > > > > > > > > > > > > > Same here Margaret, I also wondered if he was ill, or maybe even > > setting up on his own? Retiring from the practice needn't necessarily > > mean retiring full stop.> > > > > > > > > > > > > > > > > > > > > > > > > >

January 18, 2008

yes, can someone in the know give out info on other available options in the uk

for

biomedical treatment and an idea of their waiting lists.

karenza

January 18, 2008

The only problem is that none of these are MDs and therefore can't write prescriptions, order blood tests or X-rays.

Margaret

Re: Re: Heard

In a message dated 18/01/2008 12:52:55 GMT Standard Time, bbuyonlinemac writes:

yes, can someone in the know give out info on other available options in the uk for biomedical treatment and an idea of their waiting lists.

>>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet in Edinburgh, all will work long distance after 1st consult, Jon comes to you to see child in own surroundings, all are parents of ASD kids, actually Jeans is formerly ASD having recovered

Mandi x

January 18, 2008

Where does Dr Fell work ?

Re: Re: Heard

In a message dated 18/01/2008 12:52:55 GMT Standard Time, bbuyonlinemac writes:

yes, can someone in the know give out info on other available options in the uk for biomedical treatment and an idea of their waiting lists.

>>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet in Edinburgh, all will work long distance after 1st consult, Jon comes to you to see child in own surroundings, all are parents of ASD kids, actually Jeans is formerly ASD having recovered

Mandi x

January 18, 2008

Where does Dr Fell work ?

Re: Re: Heard

In a message dated 18/01/2008 12:52:55 GMT Standard Time, bbuyonlinemac writes:

yes, can someone in the know give out info on other available options in the uk for biomedical treatment and an idea of their waiting lists.

>>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet in Edinburgh, all will work long distance after 1st consult, Jon comes to you to see child in own surroundings, all are parents of ASD kids, actually Jeans is formerly ASD having recovered

Mandi x

January 18, 2008

I

just rang the Breakspear to ask if we could still get

repeat prescriptions signed by Dr H once he’d left and they said ‘yes’.

They said his announcement to leave was sudden and they were hoping to get

another DAN! dr. to replace him.

SARA

January 18, 2008

I

just rang the Breakspear to ask if we could still get

repeat prescriptions signed by Dr H once he’d left and they said ‘yes’.

They said his announcement to leave was sudden and they were hoping to get

another DAN! dr. to replace him.

SARA

January 18, 2008

Dr Fell isn't a DAN - he's an NHS Consultant paediatric gastroenterologist - and from what I have read ignores the autism and gets on with orthodox treatment of gut problems as he would with any other child with the same problems. So I personally would steer well clear of mentioning anything to do with DAN if Henry was ever lucky enough to get to see him.

Margaret

Re: Re: Heard

In a message dated 18/01/2008 12:52:55 GMT Standard Time, bbuyonlinemac writes:

yes, can someone in the know give out info on other available options in the uk for biomedical treatment and an idea of their waiting lists.

>>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet in Edinburgh, all will work long distance after 1st consult, Jon comes to you to see child in own surroundings, all are parents of ASD kids, actually Jeans is formerly ASD having recovered

Mandi x

January 18, 2008

Chelsea and Westminster but he's not a DAN, nor anything even close to

it. It's taken him 3 months to prescribe sulfasalazine for Tom. He

is very cautious and not necessarily bought into autistic

enterocolitis, for example, although he is a good and relatively broad

minded gastro.

>

> Where does Dr Fell work ?

>

> Re: Re: Heard

>

> In a message dated 18/01/2008 12:52:55 GMT Standard Time,

bbuyonline@... writes:

> yes, can someone in the know give out info on other available

options in the uk for

> biomedical treatment and an idea of their waiting lists.

>

> >>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet

in Edinburgh, all will work long distance after 1st consult, Jon comes

to you to see child in own surroundings, all are parents of ASD kids,

actually Jeans is formerly ASD having recovered

>

> Mandi x

>

January 18, 2008

Hi Steph,

Sounds very much like the same approach he is taking with us. He has

suggested to start off treating the reflux oesophagitis and then in a

few months time look at prescribing sulfasalazine.

I agree he is very cautious. He was cautious and did not want to start

treatment immediately with Sulphsalazine. There was increased

eosonophils found in the upper bowels this time but he admitted that

although his tests did not show this in the lower bowel this time,

Norman's first biopsy at GOSH 9 yrs ago showing eosonophili colitis

could not be discounted in view of the raised eosonophil count found in

the upper bowel this time.

Steph, how is Tom doing on the sulfasalazine? Is it helping? Sorry,

what exactly did Dr Fell say Tom's problem is?

emily xx

> >

> > Where does Dr Fell work ?

> >

> > Re: Re: Heard

> >

> > In a message dated 18/01/2008 12:52:55 GMT Standard Time,

> bbuyonline@ writes:

> > yes, can someone in the know give out info on other available

> options in the uk for

> > biomedical treatment and an idea of their waiting lists.

> >

> > >>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet

> in Edinburgh, all will work long distance after 1st consult, Jon comes

> to you to see child in own surroundings, all are parents of ASD kids,

> actually Jeans is formerly ASD having recovered

> >

> > Mandi x

> >

>

January 19, 2008

Tom has raised eisonophils, low grade chronic inflammation, melanoma

in the lower GI. He's been on sulfasalazine for a week and his

behavior is no better (but it's been awful for months now, loads of

SIBS). However, school has written in his diary what a great week he's

had educationally - how alert, more language, more willing to actually

do work, turn take etc. But it's only one week in so we're not

getting excited. He's got terrible dry lips and looks a bit like a

vampire at present!

We're doing 4 ml 3 times a day. Fingers crossed. How are you finding

it? is it working for you? We got back his French inflammation test

and he was in the middle section - 408 or something showing

inflammation but not incredibly bad or anything. But that was before

treatment, we'll need to do another.

Steph xx

> > >

> > > Where does Dr Fell work ?

> > >

> > > Re: Re: Heard

> > >

> > > In a message dated 18/01/2008 12:52:55 GMT Standard Time,

> > bbuyonline@ writes:

> > > yes, can someone in the know give out info on other available

> > options in the uk for

> > > biomedical treatment and an idea of their waiting lists.

> > >

> > > >>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet

> > in Edinburgh, all will work long distance after 1st consult, Jon comes

> > to you to see child in own surroundings, all are parents of ASD kids,

> > actually Jeans is formerly ASD having recovered

> > >

> > > Mandi x

> > >

> >

>

January 19, 2008

We

are going to see Dr Fell soon. Would anybody mind explaining what sulfasalazine is please. Is it

risky? Thanks, SARA

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Scorer

Sent: 19 January 2008 00:10

To:

Autism-Biomedical-Europe

Subject:

Re: Heard

Hi Steph,

Sounds very much like the same approach he is taking with us. He has

suggested to start off treating the reflux oesophagitis and then in a

few months time look at prescribing sulfasalazine.

I agree he is very cautious. He was cautious and did not want to start

treatment immediately with Sulphsalazine. There was increased

eosonophils found in the upper bowels this time but he admitted that

although his tests did not show this in the lower bowel this time,

Norman's first biopsy at GOSH 9 yrs ago showing eosonophili colitis

could not be discounted in view of the raised eosonophil count found in

the upper bowel this time.

Steph, how is Tom doing on the sulfasalazine? Is it helping? Sorry,

what exactly did Dr Fell say Tom's problem is?

emily xx

> >

> > Where does Dr Fell work ?

> >

> > Re: Re: Heard

> >

> > In a message dated 18/01/2008 12:52:55 GMT Standard Time,

> bbuyonline@ writes:

> > yes, can someone in the know give out info on other available

> options in the uk for

> > biomedical treatment and an idea of their waiting lists.

> >

> > >>Jon Tommey in Surrey, Muscroft in Chester and Lorene

Amet

> in Edinburgh, all will work long distance after 1st consult, Jon comes

> to you to see child in own surroundings, all are parents of ASD kids,

> actually Jeans is formerly ASD having recovered

> >

> > Mandi x

> >

>

January 19, 2008

absolutely!

>

> Dr Fell isn't a DAN - he's an NHS Consultant paediatric

gastroenterologist - and from what I have read ignores the autism and

gets on with orthodox treatment of gut problems as he would with any

other child with the same problems. So I personally would steer well

clear of mentioning anything to do with DAN if Henry was ever lucky

enough to get to see him.

> Margaret

> Re: Re: Heard

>

> In a message dated 18/01/2008 12:52:55 GMT Standard Time,

bbuyonline@... writes:

> yes, can someone in the know give out info on other

available options in the uk for

> biomedical treatment and an idea of their waiting lists.

>

> >>Jon Tommey in Surrey, Muscroft in Chester and Lorene

Amet in Edinburgh, all will work long distance after 1st consult, Jon

comes to you to see child in own surroundings, all are parents of ASD

kids, actually Jeans is formerly ASD having recovered

>

> Mandi x

>

January 19, 2008

Hi Steph,

Thanks for your response. We haven't been prescribed the sulphasalazine

as yet, but it is planned for in the next couple of months. It's

interesting what the school have noted with Tom, but I'd agree that a

while longer is needed to see if those benefits are due to the

sulphasalazine.

I just had a quick read on the link posted about it. The orange colour

indicated, is this because the medication has colouring in it? I also

noted about the mouth ulcers as a side effect - are Tom's lips just dry

or are they cracking?

Our french lab results did not pick up any inflammation which is quite

odd I think, as his eosonophils were raised. I wonder if the french

tests look at inflammation only in the lower bowel, does anyone know?

We are currently just on the Omeprazole, the dose is doubled, but

Norman's still showing discomfort at night (which probably is another

reason he does not sleep!). He rubs his chest a lot from discomfort,

but does have eczema going on in the same area as well which he actually

scratches and tears the skin. However the only change I'm starting to

see is that he is wanting to eat now whereas before he had completely

lost appetite and would refuse to open his mouth or chew, so my guess is

hopefully the reflux meds have lessened the discomfort in his throat a

bit. We also had results previously indicating that he aspirates on

his food as he just holds it in his mouth and then little bits of it

trickle down the wrong way!

I hope that this medication helps Tom, keep posting, it'd be nice to

hear how he gets on.

best,

emily xx

> > > >

> > > > Where does Dr Fell work ?

> > > >

> > > > Re: Re: Heard

> > > >

> > > > In a message dated 18/01/2008 12:52:55 GMT Standard Time,

> > > bbuyonline@ writes:

> > > > yes, can someone in the know give out info on other available

> > > options in the uk for

> > > > biomedical treatment and an idea of their waiting lists.

> > > >

> > > > >>Jon Tommey in Surrey, Muscroft in Chester and Lorene Amet

> > > in Edinburgh, all will work long distance after 1st consult, Jon

comes

> > > to you to see child in own surroundings, all are parents of ASD

kids,

> > > actually Jeans is formerly ASD having recovered

> > > >

> > > > Mandi x

> > > >

> > >

> >

>

January 19, 2008

But it's only one week in so we're not

> getting excited. He's got terrible dry lips and looks a bit like a

> vampire at present!

He might need some extra B2. That's what works for us. We've found

that when viruses are being attacked we need loads of B2.

Anita

>

January 20, 2008

Why can't we mention DAN I mean are kids are quite often on other

medication which he would need to know about. I know he is just

interested in the bowels but surely he must know that we are treating

our kids with the amount of autistic kids he is seeing and doesn't he

believe that what happens in the bowels affects the whole child?

I get so fed up of half truths and not being able to trust anyone in

this country regarding my childs health - I hoped Dr Fell was

different.

Peta-

-- In Autism-Biomedical-Europe , " stephaniesirr "

wrote:

>

> absolutely!

>

> >

> > Dr Fell isn't a DAN - he's an NHS Consultant paediatric

> gastroenterologist - and from what I have read ignores the autism

and

> gets on with orthodox treatment of gut problems as he would with any

> other child with the same problems. So I personally would steer well

> clear of mentioning anything to do with DAN if Henry was ever lucky

> enough to get to see him.

> > Margaret

> > Re: Re: Heard

> >

> > In a message dated 18/01/2008 12:52:55 GMT Standard Time,

> bbuyonline@ writes:

> > yes, can someone in the know give out info on other

> available options in the uk for

> > biomedical treatment and an idea of their waiting lists.

> >

> > >>Jon Tommey in Surrey, Muscroft in Chester and Lorene

> Amet in Edinburgh, all will work long distance after 1st consult,

Jon

> comes to you to see child in own surroundings, all are parents of

ASD

> kids, actually Jeans is formerly ASD having recovered

> >

> > Mandi x

> >

>

January 20, 2008

Peta

Dr Fell is very clear he is treating the bowels not the autism, that

is his speciality! if you get to see him by all means let him know

what you are doing dietary eg gf/cf scd, that make a difference to gut

to bowel sometimes, but IMHO don't worry about going into too much

detail. Get the bowels sorted,

He probably wouldn't know was a DAN! was anyway, nice bloke, lets not

scare him away - LOL

Lara

> > >

> > > Dr Fell isn't a DAN - he's an NHS Consultant paediatric

> > gastroenterologist - and from what I have read ignores the autism

> and

> > gets on with orthodox treatment of gut problems as he would with any

> > other child with the same problems. So I personally would steer well

> > clear of mentioning anything to do with DAN if Henry was ever lucky

> > enough to get to see him.

> > > Margaret

> > > Re: Re: Heard

> > >

> > > In a message dated 18/01/2008 12:52:55 GMT Standard Time,

> > bbuyonline@ writes:

> > > yes, can someone in the know give out info on other

> > available options in the uk for

> > > biomedical treatment and an idea of their waiting lists.

> > >

> > > >>Jon Tommey in Surrey, Muscroft in Chester and Lorene

> > Amet in Edinburgh, all will work long distance after 1st consult,

> Jon

> > comes to you to see child in own surroundings, all are parents of

> ASD

> > kids, actually Jeans is formerly ASD having recovered

> > >

> > > Mandi x

> > >

> >

>

January 21, 2008

Your right Lara and I can be scary once I get going ( so I'm told)!

Did you get a colonoscopy done? Charlie's BM's have never been roght

but not as bad as some and I'm wondering if I have to exaggerate to

get him looked at.

Thanks

Peta

-- In Autism-Biomedical-Europe , " Lara "

wrote:

>

> Peta

>

> Dr Fell is very clear he is treating the bowels not the autism, that

> is his speciality! if you get to see him by all means let him know

> what you are doing dietary eg gf/cf scd, that make a difference to

gut

> to bowel sometimes, but IMHO don't worry about going into too much

> detail. Get the bowels sorted,

>

> He probably wouldn't know was a DAN! was anyway, nice bloke, lets

not

> scare him away - LOL

>

> Lara

>

> > > >

> > > > Dr Fell isn't a DAN - he's an NHS Consultant paediatric

> > > gastroenterologist - and from what I have read ignores the

autism

> > and

> > > gets on with orthodox treatment of gut problems as he would

with any

> > > other child with the same problems. So I personally would steer

well

> > > clear of mentioning anything to do with DAN if Henry was ever

lucky

> > > enough to get to see him.

> > > > Margaret

> > > > Re: Re: Heard

> > > >

> > > > In a message dated 18/01/2008 12:52:55 GMT Standard

Time,

> > > bbuyonline@ writes:

> > > > yes, can someone in the know give out info on other

> > > available options in the uk for

> > > > biomedical treatment and an idea of their waiting

lists.

> > > >

> > > > >>Jon Tommey in Surrey, Muscroft in Chester and

Lorene

> > > Amet in Edinburgh, all will work long distance after 1st

consult,

> > Jon

> > > comes to you to see child in own surroundings, all are parents

of

> > ASD

> > > kids, actually Jeans is formerly ASD having recovered

> > > >

> > > > Mandi x

> > > >

> > >

> >

>

January 21, 2008

I had no idea Tom had bowel issues until he was xrayed. We thought

he was in discomfort but his xray showed some 2 year old impaction.

Tom has a flat stomach, his only clue is panda eyes. he was going at

least once and sometimes twice a day and yet was still absolutely

backed up and impacted.

With Tom it was his failure to thrive, his raised eosinophils, panda

eyes, SIBS and paleness that made Dr Fell say that he would have

referred him for a colonoscopy. However, in 2006 when Simon Murch

saw Tom (and did the xray) he only had the panda eyes, otherwise he

looked (but in fact wasn't) fairly healthy. Murch referred Tom for

an xray to shut us up (he moreorless admitted it) in fact it showed

exactly what he hadn't expected - very impaired gut motility.

Wonder if it might be all those metals we injected into him as a

baby!?

Steph x

> > > > >

> > > > > Dr Fell isn't a DAN - he's an NHS Consultant paediatric

> > > > gastroenterologist - and from what I have read ignores the

> autism

> > > and

> > > > gets on with orthodox treatment of gut problems as he would

> with any

> > > > other child with the same problems. So I personally would

steer

> well

> > > > clear of mentioning anything to do with DAN if Henry was

ever

> lucky

> > > > enough to get to see him.

> > > > > Margaret

> > > > > Re: Re: Chris

Heard

> > > > >

> > > > > In a message dated 18/01/2008 12:52:55 GMT Standard

> Time,

> > > > bbuyonline@ writes:

> > > > > yes, can someone in the know give out info on other

> > > > available options in the uk for

> > > > > biomedical treatment and an idea of their waiting

> lists.

> > > > >

> > > > > >>Jon Tommey in Surrey, Muscroft in Chester and

> Lorene

> > > > Amet in Edinburgh, all will work long distance after 1st

> consult,

> > > Jon

> > > > comes to you to see child in own surroundings, all are

parents

> of

> > > ASD

> > > > kids, actually Jeans is formerly ASD having recovered

> > > > >

> > > > > Mandi x

> > > > >

> > > >

> > >

> >

>

January 21, 2008

wow, how scary! and should be read by all parents who say " my kid

looks healthy, or my kid doesn't have a " problem " .

> > > > > >

> > > > > > Dr Fell isn't a DAN - he's an NHS Consultant paediatric

> > > > > gastroenterologist - and from what I have read ignores the

> > autism

> > > > and

> > > > > gets on with orthodox treatment of gut problems as he would

> > with any

> > > > > other child with the same problems. So I personally would

> steer

> > well

> > > > > clear of mentioning anything to do with DAN if Henry was

> ever

> > lucky

> > > > > enough to get to see him.

> > > > > > Margaret

> > > > > > Re: Re: Chris

> Heard

> > > > > >

> > > > > > In a message dated 18/01/2008 12:52:55 GMT Standard

> > Time,

> > > > > bbuyonline@ writes:

> > > > > > yes, can someone in the know give out info on

other

> > > > > available options in the uk for

> > > > > > biomedical treatment and an idea of their waiting

> > lists.

> > > > > >

> > > > > > >>Jon Tommey in Surrey, Muscroft in Chester

and

> > Lorene

> > > > > Amet in Edinburgh, all will work long distance after 1st

> > consult,

> > > > Jon

> > > > > comes to you to see child in own surroundings, all are

> parents

> > of

> > > > ASD

> > > > > kids, actually Jeans is formerly ASD having recovered

> > > > > >

> > > > > > Mandi x

> > > > > >

> > > > >

> > > >

> > >

> >

>

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