Other RSS experts

[Guest guest]

Stella - I referred you to Geffner because he is one peds endo that

I trust in the Los Angeles area. However, we live in LA and still

fly to New York every 3 months to have our daughter treated by Dr.

Harbison (using my husband's frequent flyer miles or JetBlue's $238

round trip tickets).

I love Dr. Geffner, but ask him how many RSS patients he has and it

is a handful, maybe two handfuls now with the Pharmacia study (which

is probably still more than most peds endo). Dr. Harbison has 170.

This is NOT to discount or invalidate Geffner or any other of the

GREAT pediatric endocrinologists that are out there. But in many

cases, pediatric endos start to become " specialists " in one type of

another of certain growth disorders. Dr. Geffner knows TONS of

basic and more specific info on PanHypoPit kids -- far more than the

average peds endo.

Dr. Harbison is this way with RSS/SGA kids. It is simply

experience, not brains. I hope I am explaining this the right way.

Dr. Stanhope in London (who spoke at this summer's convention) and

Dr. Wollmann from Germany are the two other peds endos that are

considered " experts " in RSS, simply based on their LARGE RSS/SGA

patient base (100+ patients). However, Dr. Wollmann is no longer a

practicing peds endo, as he went to work for a pharmaceutical

company.

> Stella,

>

> Dr. Geffner is a great doctor, too, but he does not have nearly as

> many RSS patients as Dr. H. I know of several parents who use him

and

> are very happy. I'm sorry if I misled anyone with my reply. I

did

> not mean to imply that Dr. H is the ONLY US doctor who knows about

> RSS. She is, however, so focused on it and knows so much that I

> would venture to say she is the leader in the field.

>

> How do I know so much? Well, it's a long story, but basically I

have

> lived with RSS for 15 years. Max was diagnosed when he was 7

months

> old. I originally started a support group called the Association

for

> Children with RSS when he was about 10 months and we were a group

of

> 17 families. My husband and I, and lots of family members,

published

> a quarterly newsletter, collected info from our members, spoke to

Dr.

> Silver himself (he has since passed away), and, within three

years,

> had membership had grown to over 350 families all over the world.

> Needless to say, it got too big for me to handle. Cathy Walbridge

> (she has a new last name,but I forgot what it is...) took over and

> joined with MAGIC. I am pretty active in MAGIC, working behind

the

> scenes with and Katy and helping Dr. H. each year at the

> convention. I talk to parents before and after they go in to see

Dr.

> H. when she offers consultations.

>

> So, as you can see, I've had lots of experience. Plus, I am a

> special ed teacher, so I know a lot about educational issues.

>

> Max is also a rather complicated RSS kid, so I have had to learn a

> lot in order to help make his life easier. And you will learn so

> much and become so well-informed, too! It just takes time,

patience

> and a somewhat good memory. I'm afraid that as I approach 50 I am

> losing some of those, but I'm trying to hold on as best I can.

>

> I am not superwoman, however. I've had many times when I have

posted

> my own frustrations, upsets and disappointments. That's why this

> group is so great! Someone always has something to say to help -

and

> there are lots of people who offer just a cyber hug, which can

mean

> more than anything at times.

>

> Keep on posting questions and you will see that someone almost

always

> has a reply. I've been online more than usual because I am

currently

> unemployed, but I hope that changes soon!!!

>

> Jodi

[Guest guest]

,

Please do not worry, I am very happy with Dr. Geffner and would

not change him, unless Gaby got really sick and he could not help

us. Gaby is not as sick as other children with RSS. She is a 11

month old, weighing 12 1/2 lbs, 23 inches long. She dos not need a

feeding tube and get regular table food, like there is not

tomorrow. She is very healthy , she just got her first cold and is

coming along fine. She does not need OT or PT, because she is doing

everything a " normal baby " is doing at this time. She had a late

start on sitting up and crawling, but after she master these two

areas, she just blossomed and has not stoped since then. Your

referral to Dr. Geffner was a blessing. Her old Endo, had no RSS

patient and was not well informed on the syndrome. Dr. Geffner

answered all my questions and them some.

If I every need more help our questions I know that you are the

people to ask. This suport group is great.

I have thought of taking her to see Dr. H in New York, but I do

not know if she would tell me anything drifferent, from Dr.

Geffner. Please let me know was you think. I know is get

expensive, but I have been saving our money for emergency like this

or any other kinds, for Gaby.

Thank you,

Stella

> > Stella,

> >

> > Dr. Geffner is a great doctor, too, but he does not have nearly

as

> > many RSS patients as Dr. H. I know of several parents who use

him

> and

> > are very happy. I'm sorry if I misled anyone with my reply. I

> did

> > not mean to imply that Dr. H is the ONLY US doctor who knows

about

> > RSS. She is, however, so focused on it and knows so much that I

> > would venture to say she is the leader in the field.

> >

> > How do I know so much? Well, it's a long story, but basically I

> have

> > lived with RSS for 15 years. Max was diagnosed when he was 7

> months

> > old. I originally started a support group called the

Association

> for

> > Children with RSS when he was about 10 months and we were a

group

> of

> > 17 families. My husband and I, and lots of family members,

> published

> > a quarterly newsletter, collected info from our members, spoke

to

> Dr.

> > Silver himself (he has since passed away), and, within three

> years,

> > had membership had grown to over 350 families all over the

world.

> > Needless to say, it got too big for me to handle. Cathy

Walbridge

> > (she has a new last name,but I forgot what it is...) took over

and

> > joined with MAGIC. I am pretty active in MAGIC, working behind

> the

> > scenes with and Katy and helping Dr. H. each year at

the

> > convention. I talk to parents before and after they go in to

see

> Dr.

> > H. when she offers consultations.

> >

> > So, as you can see, I've had lots of experience. Plus, I am a

> > special ed teacher, so I know a lot about educational issues.

> >

> > Max is also a rather complicated RSS kid, so I have had to learn

a

> > lot in order to help make his life easier. And you will learn

so

> > much and become so well-informed, too! It just takes time,

> patience

> > and a somewhat good memory. I'm afraid that as I approach 50 I

am

> > losing some of those, but I'm trying to hold on as best I can.

> >

> > I am not superwoman, however. I've had many times when I have

> posted

> > my own frustrations, upsets and disappointments. That's why

this

> > group is so great! Someone always has something to say to help -

> and

> > there are lots of people who offer just a cyber hug, which can

> mean

> > more than anything at times.

> >

> > Keep on posting questions and you will see that someone almost

> always

> > has a reply. I've been online more than usual because I am

> currently

> > unemployed, but I hope that changes soon!!!

> >

> > Jodi

[Guest guest]

I think that you are fine with Dr. Geffner right now, especially

since Gaby is doing well in weight and length for an RSS child,

above average.

I think that you are far better off taking the money you are saving

(or taking the brochures we have and getting tax-deductible

donations from family and friends) to attend next year's MAGIC

convention in July in Chicago -- where you can see Dr. H and get all

the various presentations, all in a single shot. Since Gaby is

still young, and you aren't in a precarious health situation, I

think that way is a better use of your money. Plus Geffner is at

the convention, too!!!

> > > Stella,

> > >

> > > Dr. Geffner is a great doctor, too, but he does not have

nearly

> as

> > > many RSS patients as Dr. H. I know of several parents who use

> him

> > and

> > > are very happy. I'm sorry if I misled anyone with my reply.

I

> > did

> > > not mean to imply that Dr. H is the ONLY US doctor who knows

> about

> > > RSS. She is, however, so focused on it and knows so much that

I

> > > would venture to say she is the leader in the field.

> > >

> > > How do I know so much? Well, it's a long story, but basically

I

> > have

> > > lived with RSS for 15 years. Max was diagnosed when he was 7

> > months

> > > old. I originally started a support group called the

> Association

> > for

> > > Children with RSS when he was about 10 months and we were a

> group

> > of

> > > 17 families. My husband and I, and lots of family members,

> > published

> > > a quarterly newsletter, collected info from our members, spoke

> to

> > Dr.

> > > Silver himself (he has since passed away), and, within three

> > years,

> > > had membership had grown to over 350 families all over the

> world.

> > > Needless to say, it got too big for me to handle. Cathy

> Walbridge

> > > (she has a new last name,but I forgot what it is...) took over

> and

> > > joined with MAGIC. I am pretty active in MAGIC, working

behind

> > the

> > > scenes with and Katy and helping Dr. H. each year at

> the

> > > convention. I talk to parents before and after they go in to

> see

> > Dr.

> > > H. when she offers consultations.

> > >

> > > So, as you can see, I've had lots of experience. Plus, I am a

> > > special ed teacher, so I know a lot about educational issues.

> > >

> > > Max is also a rather complicated RSS kid, so I have had to

learn

> a

> > > lot in order to help make his life easier. And you will learn

> so

> > > much and become so well-informed, too! It just takes time,

> > patience

> > > and a somewhat good memory. I'm afraid that as I approach 50

I

> am

> > > losing some of those, but I'm trying to hold on as best I can.

> > >

> > > I am not superwoman, however. I've had many times when I have

> > posted

> > > my own frustrations, upsets and disappointments. That's why

> this

> > > group is so great! Someone always has something to say to

help -

>

> > and

> > > there are lots of people who offer just a cyber hug, which can

> > mean

> > > more than anything at times.

> > >

> > > Keep on posting questions and you will see that someone almost

> > always

> > > has a reply. I've been online more than usual because I am

> > currently

> > > unemployed, but I hope that changes soon!!!

> > >

> > > Jodi