Re: Boston Children's Hospital

[Guest guest]

Hi Ken,

The last discussion we had with Dr. Holm about gh was a year ago. She is

against personally but if we want it she would help us get it!! I believe,

and I maybe wrong, Boston's Children's Hospital in General doesn't practice

growth horomone for non ghd. Again I may of heard wrong and that was from Dr.

Wolfdorf(sp?)

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Ken, if you are in/near Boston, why don't you see Dr. Crawford? He is an

endocrinologist - and he trained Dr. Harbison. He was the first doctor to

diagnose Max; however, no one else believed him for awhile.

Jodi

Re: New Member / introduction

>

>

> From: mdppdm@...

>

> Hey Ken,

>

> 's sees Dr. Inga Holm. She has a double doctorate,

Endrocronlogy

>

> and Geneticts. Of course thats what I was going to do but I decided under

> water fire fighting would be more of a challenge. We also see Dr. Alan

> Leichter as a GI. He is awesome. And Laurie Higgins is her nutrionist who

we

>

> cannot say enough about. It was actually the GI team that intially

diagnosed

>

> .

>

> To my friends,

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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[Guest guest]

Hi Jodi,

Thanks for making me smile with the M & M's story.

We have been to Dr. Crawford for a second opinion. Although he trained Dr.

Harbinson, he is very conservative in his use of growth hormone. We asked

him during our visit about his student (Dr. Harbinson). He was not please at

her " aggressive " approach to treating RSS. He would use growth hormone on an

RSS child only if they had hit " a brick wall and needed a boost " . So we took

that to mean our son would probably not be able to get growth hormone if we

thought it was in his best interest.

He is well over 80 now and " semi " retired. He still has some patients but

when we saw him he said he was cutting back and not accepting new ones. I do

know that some one on this list is a patient of his.

Basically, he is a wonderful man and very good doctor. I think we need many

more like him.

Ken M

Re: Boston Children's Hospital

Ken, if you are in/near Boston, why don't you see Dr. Crawford? He is an

endocrinologist - and he trained Dr. Harbison. He was the first doctor to

diagnose Max; however, no one else believed him for awhile.

Jodi

Re: New Member / introduction

>

>

> From: mdppdm@...

>

> Hey Ken,

>

> 's sees Dr. Inga Holm. She has a double doctorate,

Endrocronlogy

>

> and Geneticts. Of course thats what I was going to do but I decided under

> water fire fighting would be more of a challenge. We also see Dr. Alan

> Leichter as a GI. He is awesome. And Laurie Higgins is her nutrionist who

we

>

> cannot say enough about. It was actually the GI team that intially

diagnosed

>

> .

>

> To my friends,

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> http://click./1/967/0/_/229381/_/951778358/

> ------------------------------------------------------------------------

>

>

>

> ------------------------------------------------------------------------

> Tired of missing calls while online? Now you can surf the Internet

> without worrying about missing important calls! CallWave's FREE

> Internet Answering Machine lets you hear who's calling while online.

> http://click./1/1927/0/_/229381/_/951869886/

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>

>

------------------------------------------------------------------------

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[Guest guest]

Hi Mark,

Yes I heard the same thing but I had forgotten about it until you just

remunded me.

Ken M

Re: Boston Children's Hospital

From: mdppdm@...

Hi Ken,

The last discussion we had with Dr. Holm about gh was a year ago. She is

against personally but if we want it she would help us get it!! I believe,

and I maybe wrong, Boston's Children's Hospital in General doesn't practice

growth horomone for non ghd. Again I may of heard wrong and that was from

Dr.

Wolfdorf(sp?)

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

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[Guest guest]

Ken M.,

You were asking about GH. Just wanted to let you know that the docs at

Hopkins and Childrens' Hospital in DC are all in favor of GH for RSS kids.

They stated that they had not always found it affective with RSS kids but

that they saw absolutely no reason that it should not be tried. The

difference I've found with docs from these institutions and Dr. H is that

they do not address the eating thing. They don't seem to feel that weight

is a big factor. Perhaps that is why some of their RSS kids have not

responded positively to GH. Hope it helps.

Re: New Member / introduction

From: mdppdm@...

Hey Ken,

's sees Dr. Inga Holm. She has a double doctorate, Endrocronlogy

and Geneticts. Of course thats what I was going to do but I decided under

water fire fighting would be more of a challenge. We also see Dr. Alan

Leichter as a GI. He is awesome. And Laurie Higgins is her nutrionist who we

cannot say enough about. It was actually the GI team that intially diagnosed

.

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

------------------------------------------------------------------------

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as low as 0.0% Intro APR and no hidden fees.

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------------------------------------------------------------------------

[Guest guest]

Hi ,

Thanks,

I agree with Dr. on this point. You can't grow without the fuel to do it.

Ken M

Re: New Member / introduction

From: mdppdm@...

Hey Ken,

's sees Dr. Inga Holm. She has a double doctorate, Endrocronlogy

and Geneticts. Of course thats what I was going to do but I decided under

water fire fighting would be more of a challenge. We also see Dr. Alan

Leichter as a GI. He is awesome. And Laurie Higgins is her nutrionist who we

cannot say enough about. It was actually the GI team that intially diagnosed

.

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

------------------------------------------------------------------------

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as low as 0.0% Intro APR and no hidden fees.

Apply NOW!

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<http://click./1/967/0/_/229381/_/951778358/>

------------------------------------------------------------------------

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[Guest guest]

Hi --Very good point...One of Dr. H's hypotheses is in fact that for GH to

work, the weight/height ratio has to be brought up to a specific level. Her

entire research is based on this 2 phased approach. That is probably why she is

so adamant that we stick with the periactin with .

Katy

-

[Guest guest]

Ken,

Thanks for the update on Dr. Crawford. He used to write to me from time to

time, but I have not heard from him in awhile. He has a great sense of

humor. He always says that he is still alive and kicking and I should not

forget about him.

It is interesting, though, that he is not on the same page with Dr.

Harbison. I do agree she is aggressive. It does come in handy, though. I

have learned to wade through it all and just pay attention to the important

stuff. Just think of how that woman links us all on this list, though! It

is amazing. I don't think even SHE realizes the effect she has had on

people.

Jodi

Re: New Member / introduction

> >

> >

> > From: mdppdm@...

> >

> > Hey Ken,

> >

> > 's sees Dr. Inga Holm. She has a double doctorate,

> Endrocronlogy

> >

> > and Geneticts. Of course thats what I was going to do but I decided

under

> > water fire fighting would be more of a challenge. We also see Dr. Alan

> > Leichter as a GI. He is awesome. And Laurie Higgins is her nutrionist

who

> we

> >

> > cannot say enough about. It was actually the GI team that intially

> diagnosed

> >

> > .

> >

> > To my friends,

> > Peace and Prayers

> > Mark dad to 4 ( 5 in April), G-tube

> >

> > ------------------------------------------------------------------------

> > GET A NEXTCARD VISA, in 30 seconds! Get rates

> > as low as 0.0% Intro APR and no hidden fees.

> > Apply NOW!

> > http://click./1/967/0/_/229381/_/951778358/

> > ------------------------------------------------------------------------

> >

> >

> >

> > ------------------------------------------------------------------------

> > Tired of missing calls while online? Now you can surf the Internet

> > without worrying about missing important calls! CallWave's FREE

> > Internet Answering Machine lets you hear who's calling while online.

> > http://click./1/1927/0/_/229381/_/951869886/

> > ------------------------------------------------------------------------

> >

> >

> >

>

>

>

> ------------------------------------------------------------------------

> Luck o' the Irish! Get your St. Paddy's day party supplies at

> GreatEntertaining.com today. Green salami, brew kits, shamrock

> confetti, gold coins, & more. Go Bragh!

> http://click./1/2042/0/_/229381/_/951872686/

> ------------------------------------------------------------------------

>

>

>

> ------------------------------------------------------------------------

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