Re: Terri ..and ..Another Michigander checking in!

[Guest guest]

Hi Terry,

We live in Farmington Hills, Michigan. Surprising that a few of us

are in this same state!!

I also take my daughter to New York, but if I hear of anyone with a

proven track record I will let you know.

And a big hearty welcome to the comfort zone!!!

AvaMarie,.

-

-- In RSS-Support , " grace12803 "

wrote:

>

> Hi, I am new to the group, just wanted to introduce myself and

> daughter. I have twin girls born 1/28/03: Grace and Alivia. They

> were 5 weeks early, but very small especially Grace: 3 1/2 lbs and

14

> 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> was wrong: big head, webbed toes, incurved fingers, small triangle

> face. We went home, Grace wouldn't eat. We forced milk in her,

she

> puked. PT and OT were started. She wasn't growing, couldn't lift

her

> head. Finally switching peds, we got referred to Univ. of MI

Genetics

> and Endo. They came up with RSS, got g-tube May'04, tested

negative

> for RSS as most do, started GHT March '05. She has grown 4 1/4

in.

> and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

stopped

> using g-tube as of Jan. '06, but am not sure if that is right

> decision. Average cal. a day is about 846 w/out tube. My

nutrionist

> has made little effort to help,has no opinion on using/ not using

> tube. I don't know what else to do for her or if we are missing

> something. Any advice on other areas to look into or docs?

> Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

mths,

> 21 lbs, 31 1/4 in, GHT)

>

[Guest guest]

AvaMarie,

Wow, so many from MI! Have you always gone to NY? Did you ever use U

of M ? How often do you go? We go to U of M every 3 mths for GHT. You

must be seeing Dr. H, Will she see new patients? Thanks, Terri---

In RSS-Support , " shanghavmri " wrote:

>

> Hi Terry,

>

> We live in Farmington Hills, Michigan. Surprising that a few of us

> are in this same state!!

>

> I also take my daughter to New York, but if I hear of anyone with a

> proven track record I will let you know.

>

> And a big hearty welcome to the comfort zone!!!

>

>

> AvaMarie,.

>

> -

>

> -- In RSS-Support , " grace12803 " <grace12803@>

> wrote:

> >

> > Hi, I am new to the group, just wanted to introduce myself and

> > daughter. I have twin girls born 1/28/03: Grace and Alivia.

They

> > were 5 weeks early, but very small especially Grace: 3 1/2 lbs

and

> 14

> > 3/4 in. Immediatly the docs brought in genetics, but no one knew

> what

> > was wrong: big head, webbed toes, incurved fingers, small

triangle

> > face. We went home, Grace wouldn't eat. We forced milk in her,

> she

> > puked. PT and OT were started. She wasn't growing, couldn't

lift

> her

> > head. Finally switching peds, we got referred to Univ. of MI

> Genetics

> > and Endo. They came up with RSS, got g-tube May'04, tested

> negative

> > for RSS as most do, started GHT March '05. She has grown 4 1/4

> in.

> > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

> stopped

> > using g-tube as of Jan. '06, but am not sure if that is right

> > decision. Average cal. a day is about 846 w/out tube. My

> nutrionist

> > has made little effort to help,has no opinion on using/ not using

> > tube. I don't know what else to do for her or if we are missing

> > something. Any advice on other areas to look into or docs?

> > Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

> mths,

> > 21 lbs, 31 1/4 in, GHT)

> >

>

[Guest guest]

Hi Terri,

I do hope Dr. Harbison will accept a new patient because Michigan is

not too helpful... of late. We just began seeing her this year in

January and we return in May for a follow up. I guess I am very new

so that means she probably would take new patients.

Yes, I did use U of M, and other endos in Michigan however we kept

hearing a negative answer on my daughters immediate needs (GHT).

Dr. H gave my daughter needed medication, and regarding the GHT she

enlisted the help of a liaison to do battle with the insurance

companies for us. I was pleased with that because there is no doubt

the insurance companies will try to get out of supplying it.

Dr. H is one in a million- in so many ways, so if you think you want

to be there...go for it!!

AvaMarie

> > >

> > > Hi, I am new to the group, just wanted to introduce myself and

> > > daughter. I have twin girls born 1/28/03: Grace and Alivia.

> They

> > > were 5 weeks early, but very small especially Grace: 3 1/2 lbs

> and

> > 14

> > > 3/4 in. Immediatly the docs brought in genetics, but no one

knew

> > what

> > > was wrong: big head, webbed toes, incurved fingers, small

> triangle

> > > face. We went home, Grace wouldn't eat. We forced milk in

her,

> > she

> > > puked. PT and OT were started. She wasn't growing, couldn't

> lift

> > her

> > > head. Finally switching peds, we got referred to Univ. of MI

> > Genetics

> > > and Endo. They came up with RSS, got g-tube May'04, tested

> > negative

> > > for RSS as most do, started GHT March '05. She has grown 4

1/4

> > in.

> > > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

> > stopped

> > > using g-tube as of Jan. '06, but am not sure if that is right

> > > decision. Average cal. a day is about 846 w/out tube. My

> > nutrionist

> > > has made little effort to help,has no opinion on using/ not

using

> > > tube. I don't know what else to do for her or if we are

missing

> > > something. Any advice on other areas to look into or docs?

> > > Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

> > mths,

> > > 21 lbs, 31 1/4 in, GHT)

> > >

> >

>

[Guest guest]

Thanks for the info! Wow, we did not have to battle for GHT at all.

They suggested it, only concern was Grace was only 2 when started and

there was little info on how well it worked in someone so young. As

for insurance, Grace qualifies for Children's Special Health Care

through state of MI and they pick up whatever our insurance doesn't.

I guess every doc. and situation is a little different. We will

definetly look into seeing Dr. Harbison. We have Endo appt. March 6

at U of M. I will take all the articles from Magic and see what they

think. -Terri mom of Grace(RSS, GHT, g-tube)and Alivia(Non RSS)---

In RSS-Support , " shanghavmri " wrote:

>

> Hi Terri,

>

> I do hope Dr. Harbison will accept a new patient because Michigan

is

> not too helpful... of late. We just began seeing her this year in

> January and we return in May for a follow up. I guess I am very new

> so that means she probably would take new patients.

>

> Yes, I did use U of M, and other endos in Michigan however we kept

> hearing a negative answer on my daughters immediate needs (GHT).

>

> Dr. H gave my daughter needed medication, and regarding the GHT she

> enlisted the help of a liaison to do battle with the insurance

> companies for us. I was pleased with that because there is no doubt

> the insurance companies will try to get out of supplying it.

>

>

> Dr. H is one in a million- in so many ways, so if you think you

want

> to be there...go for it!!

>

> AvaMarie

>

>

>

>

>

> > > >

> > > > Hi, I am new to the group, just wanted to introduce myself

and

> > > > daughter. I have twin girls born 1/28/03: Grace and Alivia.

> > They

> > > > were 5 weeks early, but very small especially Grace: 3 1/2

lbs

> > and

> > > 14

> > > > 3/4 in. Immediatly the docs brought in genetics, but no one

> knew

> > > what

> > > > was wrong: big head, webbed toes, incurved fingers, small

> > triangle

> > > > face. We went home, Grace wouldn't eat. We forced milk in

> her,

> > > she

> > > > puked. PT and OT were started. She wasn't growing, couldn't

> > lift

> > > her

> > > > head. Finally switching peds, we got referred to Univ. of MI

> > > Genetics

> > > > and Endo. They came up with RSS, got g-tube May'04, tested

> > > negative

> > > > for RSS as most do, started GHT March '05. She has grown 4

> 1/4

> > > in.

> > > > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

> > > stopped

> > > > using g-tube as of Jan. '06, but am not sure if that is right

> > > > decision. Average cal. a day is about 846 w/out tube. My

> > > nutrionist

> > > > has made little effort to help,has no opinion on using/ not

> using

> > > > tube. I don't know what else to do for her or if we are

> missing

> > > > something. Any advice on other areas to look into or docs?

> > > > Sincerely, Terri Tippman( mom of Grace RSS, 36

1/2

> > > mths,

> > > > 21 lbs, 31 1/4 in, GHT)

> > > >

> > >

> >

>

[Guest guest]

Thank you too!!! I forgot the state was involved with ita when

she was a very small baby. She was born in China and when I came

here to my other home they wanted to come to my Michigan home and

give her Early Intervention Services or something like that. But we

went back to our home in China so she did not get that service.

I will begin with her school and see if they can track down the

numbers for me to ask about assistance...just in case we need it.

The problem with my child (SGA) is that she did begin to grow at age

5 so she looked like she may be growing and then the next thing I

heard from three endos is that the growing is up and she will only

be 4ft 3 in. So at first, they were watching her grow- then they

decided she was not getting too tall, but now said it was too late

to do anything about it- per her bone age. Web pages such as " first

consult " state repeatedly that the SGA child does not have accurate

bone age readings and the FDA says to give an SGA child GHT. I guess

we were a difficult case.

Thank you so much for reminding me regarding the State of MI!!!

AvaMarie

> > > > >

> > > > > Hi, I am new to the group, just wanted to introduce myself

> and

> > > > > daughter. I have twin girls born 1/28/03: Grace and

Alivia.

> > > They

> > > > > were 5 weeks early, but very small especially Grace: 3 1/2

> lbs

> > > and

> > > > 14

> > > > > 3/4 in. Immediatly the docs brought in genetics, but no

one

> > knew

> > > > what

> > > > > was wrong: big head, webbed toes, incurved fingers, small

> > > triangle

> > > > > face. We went home, Grace wouldn't eat. We forced milk

in

> > her,

> > > > she

> > > > > puked. PT and OT were started. She wasn't growing,

couldn't

> > > lift

> > > > her

> > > > > head. Finally switching peds, we got referred to Univ. of

MI

> > > > Genetics

> > > > > and Endo. They came up with RSS, got g-tube May'04,

tested

> > > > negative

> > > > > for RSS as most do, started GHT March '05. She has grown

4

> > 1/4

> > > > in.

> > > > > and 3 1/2 lbs in 9 mths which is so huge. Now what? We

have

> > > > stopped

> > > > > using g-tube as of Jan. '06, but am not sure if that is

right

> > > > > decision. Average cal. a day is about 846 w/out tube. My

> > > > nutrionist

> > > > > has made little effort to help,has no opinion on using/

not

> > using

> > > > > tube. I don't know what else to do for her or if we are

> > missing

> > > > > something. Any advice on other areas to look into or docs?

> > > > > Sincerely, Terri Tippman( mom of Grace RSS, 36

> 1/2

> > > > mths,

> > > > > 21 lbs, 31 1/4 in, GHT)

> > > > >

> > > >

> > >

> >

>

[Guest guest]

AvaMarie,

The phone number for Children's Special Health Care is 1-800-359-

3722, 8 am.-5pm. Mon. - Fri. You have to get a medical report from a

specialist, there is a form available online www.healthcare.mivu.org,

in module 4. The doctors can fill this out and they will ask for

some financial info. We have to pay $25.oo a month, but that is

nothing when compared to cost of GHT. Good Luck!

Terri

> > > > > >

> > > > > > Hi, I am new to the group, just wanted to introduce

myself

> > and

> > > > > > daughter. I have twin girls born 1/28/03: Grace and

> Alivia.

> > > > They

> > > > > > were 5 weeks early, but very small especially Grace: 3

1/2

> > lbs

> > > > and

> > > > > 14

> > > > > > 3/4 in. Immediatly the docs brought in genetics, but no

> one

> > > knew

> > > > > what

> > > > > > was wrong: big head, webbed toes, incurved fingers, small

> > > > triangle

> > > > > > face. We went home, Grace wouldn't eat. We forced milk

> in

> > > her,

> > > > > she

> > > > > > puked. PT and OT were started. She wasn't growing,

> couldn't

> > > > lift

> > > > > her

> > > > > > head. Finally switching peds, we got referred to Univ.

of

> MI

> > > > > Genetics

> > > > > > and Endo. They came up with RSS, got g-tube May'04,

> tested

> > > > > negative

> > > > > > for RSS as most do, started GHT March '05. She has grown

> 4

> > > 1/4

> > > > > in.

> > > > > > and 3 1/2 lbs in 9 mths which is so huge. Now what? We

> have

> > > > > stopped

> > > > > > using g-tube as of Jan. '06, but am not sure if that is

> right

> > > > > > decision. Average cal. a day is about 846 w/out tube.

My

> > > > > nutrionist

> > > > > > has made little effort to help,has no opinion on using/

> not

> > > using

> > > > > > tube. I don't know what else to do for her or if we are

> > > missing

> > > > > > something. Any advice on other areas to look into or

docs?

> > > > > > Sincerely, Terri Tippman( mom of Grace RSS,

36

> > 1/2

> > > > > mths,

> > > > > > 21 lbs, 31 1/4 in, GHT)

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Thanks, will get right on this!

> > > > > > >

> > > > > > > Hi, I am new to the group, just wanted to introduce

> myself

> > > and

> > > > > > > daughter. I have twin girls born 1/28/03: Grace and

> > Alivia.

> > > > > They

> > > > > > > were 5 weeks early, but very small especially Grace: 3

> 1/2

> > > lbs

> > > > > and

> > > > > > 14

> > > > > > > 3/4 in. Immediatly the docs brought in genetics, but

no

> > one

> > > > knew

> > > > > > what

> > > > > > > was wrong: big head, webbed toes, incurved fingers,

small

> > > > > triangle

> > > > > > > face. We went home, Grace wouldn't eat. We forced

milk

> > in

> > > > her,

> > > > > > she

> > > > > > > puked. PT and OT were started. She wasn't growing,

> > couldn't

> > > > > lift

> > > > > > her

> > > > > > > head. Finally switching peds, we got referred to

Univ.

> of

> > MI

> > > > > > Genetics

> > > > > > > and Endo. They came up with RSS, got g-tube May'04,

> > tested

> > > > > > negative

> > > > > > > for RSS as most do, started GHT March '05. She has

grown

> > 4

> > > > 1/4

> > > > > > in.

> > > > > > > and 3 1/2 lbs in 9 mths which is so huge. Now what?

We

> > have

> > > > > > stopped

> > > > > > > using g-tube as of Jan. '06, but am not sure if that

is

> > right

> > > > > > > decision. Average cal. a day is about 846 w/out

tube.

> My

> > > > > > nutrionist

> > > > > > > has made little effort to help,has no opinion on

using/

> > not

> > > > using

> > > > > > > tube. I don't know what else to do for her or if we

are

> > > > missing

> > > > > > > something. Any advice on other areas to look into or

> docs?

> > > > > > > Sincerely, Terri Tippman( mom of Grace

RSS,

> 36

> > > 1/2

> > > > > > mths,

> > > > > > > 21 lbs, 31 1/4 in, GHT)

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>