Re: need good RSS person in Portland, Oregon

[Guest guest]

Hi,

I'm sure you will get many more responses but if there is anyway you

can just up and go and get to the convention you will truly feel much

more in control of things when you leave. I went for the first time

last year and even though you hear everyone talking sightseeing etc

the medical information in amazing and empowering. There is another

mom in Oregon, or maybe WA state? And, Hillary (one of the adults is

out in Law school either in OR or WA, I am just not able to

remember. I think Seattle,WA though....

, mom to , 5 and Emerence 29 mo 21lbs 32 in

> Hi,

>

> I know many of you are busy at the convention. I just

> discovered RSS and then this site a couple days ago.

>

> I have an 8 year old little girl going into

> " precocious puberty " who it seems very likely is RSS

> with a mild " phenotype " . However, due to her being

> internationally adopted, there is no early medical

> background and so this is complicating getting a

> diagnosis.

>

> She DOES have:

>

> hypoglycemic (which was VERY bad after recent

> operation when she was kept from food and water all

> night and until after the operation which didn't START

> until 1:30pm)

>

> incurving pinkies

>

> small chin

>

> SMALL stature

>

> until this past year when I really worked on intensive

> feeding, was very thin, now is just right.

>

> If ANYONE can refer me to an RSS specialist nearby to

> Portland, Oregon I would REALLY appreciate it.

>

> The last thing my daughter needs in addition to

> everything else she has to deal with is " breasts " in

> third grade when she is only 47 1/2 " tall.

>

> Thank you very much!

>

> Debbie

>

>

> __________________________________________________

>

[Guest guest]

---hi i hope you can find what you are looking for and a answer to

everything, sounds like she is rss, just wanted to say hi, and if you

need anything everyone here is like family and absolutely wonderful!!

stephanie kyla 4 rss jonathan 20 months, non rss

In RSS-Support , DhasaDreamer <dhasadreamer@y...>

wrote:

> Hi,

>

> I know many of you are busy at the convention. I just

> discovered RSS and then this site a couple days ago.

>

> I have an 8 year old little girl going into

> " precocious puberty " who it seems very likely is RSS

> with a mild " phenotype " . However, due to her being

> internationally adopted, there is no early medical

> background and so this is complicating getting a

> diagnosis.

>

> She DOES have:

>

> hypoglycemic (which was VERY bad after recent

> operation when she was kept from food and water all

> night and until after the operation which didn't START

> until 1:30pm)

>

> incurving pinkies

>

> small chin

>

> SMALL stature

>

> until this past year when I really worked on intensive

> feeding, was very thin, now is just right.

>

> If ANYONE can refer me to an RSS specialist nearby to

> Portland, Oregon I would REALLY appreciate it.

>

> The last thing my daughter needs in addition to

> everything else she has to deal with is " breasts " in

> third grade when she is only 47 1/2 " tall.

>

> Thank you very much!

>

> Debbie

>

>

> __________________________________________________

>

[Guest guest]

Everyone - I sent Debbie the Barker's email and phone number from

Oregon. If anyone can help her it is . Jenn

> Hi,

>

> I know many of you are busy at the convention. I just

> discovered RSS and then this site a couple days ago.

>

> I have an 8 year old little girl going into

> " precocious puberty " who it seems very likely is RSS

> with a mild " phenotype " . However, due to her being

> internationally adopted, there is no early medical

> background and so this is complicating getting a

> diagnosis.

>

> She DOES have:

>

> hypoglycemic (which was VERY bad after recent

> operation when she was kept from food and water all

> night and until after the operation which didn't START

> until 1:30pm)

>

> incurving pinkies

>

> small chin

>

> SMALL stature

>

> until this past year when I really worked on intensive

> feeding, was very thin, now is just right.

>

> If ANYONE can refer me to an RSS specialist nearby to

> Portland, Oregon I would REALLY appreciate it.

>

> The last thing my daughter needs in addition to

> everything else she has to deal with is " breasts " in

> third grade when she is only 47 1/2 " tall.

>

> Thank you very much!

>

> Debbie

>

>

> __________________________________________________

>

[Guest guest]

Hi Debbie,

It sounds like your daughter has RSS. However, that is for a

doctor to decide.

Since your daughter is showing signs of puberty, I would make

an appointment with a pediaitric endocrinologist sooner, rather

than later. I don't know of any expert in the Portland Oregon (or

my home town Portland Maine) area. I would call around to see if

you can locate a pediatric endocrinologist who has had any

experience with RSS. I would also try and locate a good

geneticist. Since RSS is a gentic growth disorder.

If she is starting puberty early, there are a few medications that

can be used to delay puberty. The ones that come to mind are

Zoladex or Lupron. Also, you may want to consider starting your

daughter on growth hormone to try and get as much growth as

soon as possible in case they cannot delay her puberty.

I hope this helps.

Ken M

> Hi,

>

> I know many of you are busy at the convention. I just

> discovered RSS and then this site a couple days ago.

>

> I have an 8 year old little girl going into

> " precocious puberty " who it seems very likely is RSS

> with a mild " phenotype " . However, due to her being

> internationally adopted, there is no early medical

> background and so this is complicating getting a

> diagnosis.

>

> She DOES have:

>

> hypoglycemic (which was VERY bad after recent

> operation when she was kept from food and water all

> night and until after the operation which didn't START

> until 1:30pm)

>

> incurving pinkies

>

> small chin

>

> SMALL stature

>

> until this past year when I really worked on intensive

> feeding, was very thin, now is just right.

>

> If ANYONE can refer me to an RSS specialist nearby to

> Portland, Oregon I would REALLY appreciate it.

>

> The last thing my daughter needs in addition to

> everything else she has to deal with is " breasts " in

> third grade when she is only 47 1/2 " tall.

>

> Thank you very much!

>

> Debbie

>

>

>

__________________________________________________

>

[Guest guest]

i would like to get in touch with the lady that lives in portland oregon as i

live in the milwaukie oregon area just outside of portland and my son has rss ..

he is now 22 and weighs 64 lbs ...please contact me at gracewithin@...

it helps to know others that have the same situation as my son. thanks again

...grace

[Guest guest]

please contact me jennifer regarding rss help in portland area. i live just

outside of there and would love to talk to you .. my son has rss and is 64 lbs

and just like to know what you can find out for him as well.

[Guest guest]

The family that used to live in Portland now lives in Boise, Idaho. I

am trying to reach them via email. Will get back to you. Bit crazy

with conv prep. js

> please contact me jennifer regarding rss help in portland area. i

live just outside of there and would love to talk to you .. my son has

rss and is 64 lbs and just like to know what you can find out for him

as well.

>

>