Moving to Florida

[Guest guest]

Hi,

Although I've read your messages from time to time this is my first

post. My daughter, Katelyn was diagnosed with RSS when she was 9

months old. Now she is 8 1/2. Until last year there was no real

problems, except to boost her caloric intake. Now we are dealing with

mild scoliosis, precocious puberty and growth hormone deficiency. I

have been lucky so far in that my insurance covers all her

prescriptions and that the Drs. at Childrens Hospital of Philadelphia

are truly experts in RSS and have told me all along what to expect. I

decided to go there after the first time the local hospital turn the

entire arm of my tiny baby black and blue from top to bottom to draw

blood.

Here are my problems. I'm moving from NJ to the Fort Lauderdale Area

of Florida in June. Can anyone recommend a good (knowledgeable in RSS)

encrinologist in that area? Up to now we've been so lucky, because we

could go to Childrens Hospital of Philadelphia and get all the tests

and visits done in one afternoon. It was worth a 1 1/2 hour drive. I

have been able to find one at Childrens Hospital of Miami, who

particiapte with United Healthcare.

Also, since my insurance is changing, I found out that the new

insurance, United Healthcare does not cover her Lupron Depot Ped

medication. I will have to wait until the insurance changes, get

rejected, then go through the appeal process. However, the Humatrope

is covered with a copay but no prior approval needed. Who'd figure?

Oh boy, I've seen posts like this before, but never thought it would

happen to me. I'm being brave enough to give up my job, that I've had

for 22 years, to join my boyfriend, Katelyn's Dad, in Fl, but I

wasn't expecting these issues too. I thought United Healthcare was

such a good insurance company, but now I can appreciate Healthnet.Who

took months to approve her meds, but now I get them delivered free

each month.

Joanne,

Katelyn (RSS,8.5 years)

[Guest guest]

-Hi Joanne,

I live in the Ft. Lauderdale area and am familiar with most of the doctors in

all specialties

around here. I can make some recommendations of who to go to and who not to go

to!

Whereabouts in Ft. Lauderdale are you moving to? I have an 11 year old son who

has the

same issues as Katelyn and more! Do you have other children? I have 2 others -

in fact

one is a Kaitlin (spelled differently). I'd love to hear all about your

daughter & share more

about my son. Please email me privately at: capuano_k@...

Kim C.

> Hi,

> Although I've read your messages from time to time this is my first

> post. My daughter, Katelyn was diagnosed with RSS when she was 9

> months old. Now she is 8 1/2. Until last year there was no real

> problems, except to boost her caloric intake. Now we are dealing with

> mild scoliosis, precocious puberty and growth hormone deficiency. I

> have been lucky so far in that my insurance covers all her

> prescriptions and that the Drs. at Childrens Hospital of Philadelphia

> are truly experts in RSS and have told me all along what to expect. I

> decided to go there after the first time the local hospital turn the

> entire arm of my tiny baby black and blue from top to bottom to draw

> blood.

>

> Here are my problems. I'm moving from NJ to the Fort Lauderdale Area

> of Florida in June. Can anyone recommend a good (knowledgeable in RSS)

> encrinologist in that area? Up to now we've been so lucky, because we

> could go to Childrens Hospital of Philadelphia and get all the tests

> and visits done in one afternoon. It was worth a 1 1/2 hour drive. I

> have been able to find one at Childrens Hospital of Miami, who

> particiapte with United Healthcare.

>

> Also, since my insurance is changing, I found out that the new

> insurance, United Healthcare does not cover her Lupron Depot Ped

> medication. I will have to wait until the insurance changes, get

> rejected, then go through the appeal process. However, the Humatrope

> is covered with a copay but no prior approval needed. Who'd figure?

>

> Oh boy, I've seen posts like this before, but never thought it would

> happen to me. I'm being brave enough to give up my job, that I've had

> for 22 years, to join my boyfriend, Katelyn's Dad, in Fl, but I

> wasn't expecting these issues too. I thought United Healthcare was

> such a good insurance company, but now I can appreciate Healthnet.Who

> took months to approve her meds, but now I get them delivered free

> each month.

>

> Joanne,

> Katelyn (RSS,8.5 years)

[Guest guest]

Joanne,

If you were moving to Orlando I would be able to recommend an EXCELLENT Ped.

The Endo is all right, Not very up on RSS/SGA, but my Ped is VERY familiar

with RSS/SGA, Dr. H and Dr Stanhope.....so she will get the right things for

my son, even if the Endo does not agree.....

R

Mom to:

Jed (1/22/93) Tic disorder, Asthma, Heart Murmur.....

Liam (12/12/00) SGA/RSS, Hypothyroid,Asthma, Epilepsy, Hearing Impaired,

Sensory Issues, Food Allergies, Heart Murmur...

Groups I own:

Toddlers with Epilepsy

Moms 30 and Beyond

HOHPreschoolers