Re: Latest on Isaac..vent?..kinda??...sorry so long

[Guest guest]

Hi Mimi, I'm . I was reading your post and I noticed are

kids our one day apart, Autumn will be 9 months on the 20th. Our

gentetisist said she was too little to do a bone scan at this time

and I've heard from my older sons endo that they usually don't do

them until they are older because they are hard to read with the

bones being so small...I don't know anything beyond that. As for the

growth hormone, my daughters ped said growth hormone would be

available for her because of her size which is considered failure to

thrive on top of RSS due to her low weight and length compared to

others of her age. I don't see any reason why he wouldn't qualify for

GHT. Her genetisist told me that tests show it works on some kids and

not on others and he said that children with RSS without a growth

hormone deficiency, something about how their receptors don't

acknowledge the growth hormone available and therefore adding more by

growth hormone therapy isn't too likely to work because it won't

acknowledge that either. He did say that there have been some cases

where it seemed to have helped. Now, I don't know any of the

statistics or anything, just what he told me. I'd love to know more

because Autumn does not have a deficiancy and I'll have to make the

choice whether or not to do therapy in the future and if it will

help. Congratulations on the weight gain, we just had the same thing

happen! It was like a miracle.

mom to Autumn 8 1/2 mos. 24 inch 12 lbs 15 oz and 2 boys

>

> Hi all-

>

> Been a while since I posted. WE had our follow up visit with the

> geneticist last month and she agreed with Dr.H's diagnosis of RSS

> but she did say that she didn't think Isaac was at risk for

> hypoglocemia and the only way to tell would be a fast through the

> night and then take his glucose. I know for a fact that this doc

has

> at least one other patient with RSS that is a member of MAGIC so I

> assume she has talked with Dr. H..maybe? She also said that GHT

> doesn't always work with RSS/SGA kids as she has seen many that had

> poor results. I told her that I had tons of data (compliments of

Jen

> Salem..Thx..I owe u one but she said there hasn't been

> inconclusive blah blah blah. I was kind of discouraged because of

> her different views on our kids. One would think that she would

know

> RSS kids are at risk for Hypoglocemia.

>

> On a good note- visited the endo and Isaac's TSH and T-4 levels are

> good and he has gained 11 oz & 3/4 " in a month!!! YEAH! We don't

> have to do blood work again until december but he is scheduled for

a

> flu shot next week I did ask the endo about bone scan and she

> said they don't usually do it until they reach 2 years of age. Any

> one had it done earlier? Just curious. She also told me that RSS is

> not an automatic " qualification " for growth hormone therapy. THere

> has to be SGA/ failure to thrive or GH deficency.

>

> I gotta go wake him up to eat..Oct. 19th he will be 9 mos and then

> we can start adding cornstarch to the last bottle..I am counting

the

> days !!<wink>

>

> Mimi

> Mom to Isaac (RSS, hypothyroidism, almost 9 mos, 11 lbs, 15 oz

> 24 1/4 " long)

>

> P.S.- Sorry for the awful spelling..my eyes are getting heavy.

[Guest guest]

hey mimi!!!

congrates on the weight gain!!!!! yeah!!! as far as the bone age

christopher has been getting this done ever since he was a baby.

and rss as far as i was told is now a qualification for ght. this

changed a year ago i believe (correct me if i am wrong jen s.) good

luck and talk to you soon!!!

jodie c.

>

> Hi all-

>

> Been a while since I posted. WE had our follow up visit with the

> geneticist last month and she agreed with Dr.H's diagnosis of RSS

> but she did say that she didn't think Isaac was at risk for

> hypoglocemia and the only way to tell would be a fast through the

> night and then take his glucose. I know for a fact that this doc

has

> at least one other patient with RSS that is a member of MAGIC so I

> assume she has talked with Dr. H..maybe? She also said that GHT

> doesn't always work with RSS/SGA kids as she has seen many that

had

> poor results. I told her that I had tons of data (compliments of

Jen

> Salem..Thx..I owe u one but she said there hasn't been

> inconclusive blah blah blah. I was kind of discouraged because of

> her different views on our kids. One would think that she would

know

> RSS kids are at risk for Hypoglocemia.

>

> On a good note- visited the endo and Isaac's TSH and T-4 levels

are

> good and he has gained 11 oz & 3/4 " in a month!!! YEAH! We don't

> have to do blood work again until december but he is scheduled for

a

> flu shot next week I did ask the endo about bone scan and she

> said they don't usually do it until they reach 2 years of age. Any

> one had it done earlier? Just curious. She also told me that RSS

is

> not an automatic " qualification " for growth hormone therapy. THere

> has to be SGA/ failure to thrive or GH deficency.

>

> I gotta go wake him up to eat..Oct. 19th he will be 9 mos and then

> we can start adding cornstarch to the last bottle..I am counting

the

> days !!<wink>

>

> Mimi

> Mom to Isaac (RSS, hypothyroidism, almost 9 mos, 11 lbs, 15 oz

> 24 1/4 " long)

>

> P.S.- Sorry for the awful spelling..my eyes are getting heavy.

[Guest guest]

Hi -

Wow! Our babies are soo close that is really neat..now I know who to

ask about " age related questions " If you don't mind me

asking...what state are you in? We are in Texas. Have you posted

pics of Autumn yet? How much did she weigh and what was her length

when she was born? Was she full term? Isaac was born at 39 weeks and

weighed 4 lbs 12oz and was 15 " . Thanks for your post!!

Mimi

[Guest guest]

Yeah!! Congratulations on the weight gain.

B

4 3/4 RSS and Kelli 2 NON RSS

> >

> > Hi all-

> >

> > Been a while since I posted. WE had our follow up visit with the

> > geneticist last month and she agreed with Dr.H's diagnosis of

RSS

> > but she did say that she didn't think Isaac was at risk for

> > hypoglocemia and the only way to tell would be a fast through

the

> > night and then take his glucose. I know for a fact that this doc

> has

> > at least one other patient with RSS that is a member of MAGIC so

I

> > assume she has talked with Dr. H..maybe? She also said that GHT

> > doesn't always work with RSS/SGA kids as she has seen many that

> had

> > poor results. I told her that I had tons of data (compliments of

> Jen

> > Salem..Thx..I owe u one but she said there hasn't been

> > inconclusive blah blah blah. I was kind of discouraged because

of

> > her different views on our kids. One would think that she would

> know

> > RSS kids are at risk for Hypoglocemia.

> >

> > On a good note- visited the endo and Isaac's TSH and T-4 levels

> are

> > good and he has gained 11 oz & 3/4 " in a month!!! YEAH! We don't

> > have to do blood work again until december but he is scheduled

for

> a

> > flu shot next week I did ask the endo about bone scan and she

> > said they don't usually do it until they reach 2 years of age.

Any

> > one had it done earlier? Just curious. She also told me that RSS

> is

> > not an automatic " qualification " for growth hormone therapy.

THere

> > has to be SGA/ failure to thrive or GH deficency.

> >

> > I gotta go wake him up to eat..Oct. 19th he will be 9 mos and

then

> > we can start adding cornstarch to the last bottle..I am counting

> the

> > days !!<wink>

> >

> > Mimi

> > Mom to Isaac (RSS, hypothyroidism, almost 9 mos, 11 lbs, 15 oz

> > 24 1/4 " long)

> >

> > P.S.- Sorry for the awful spelling..my eyes are getting heavy.

[Guest guest]

Hi,

Just fyi our health care Blue Cross Blue Shield of MA has 18 pages of

documents related to GH coverage and they do NOT cover RSS only

SGA...just a heads up - read the fine print on insurance!

> >

> > Hi all-

> >

> > Been a while since I posted. WE had our follow up visit with the

> > geneticist last month and she agreed with Dr.H's diagnosis of RSS

> > but she did say that she didn't think Isaac was at risk for

> > hypoglocemia and the only way to tell would be a fast through the

> > night and then take his glucose. I know for a fact that this doc

> has

> > at least one other patient with RSS that is a member of MAGIC so

I

> > assume she has talked with Dr. H..maybe? She also said that GHT

> > doesn't always work with RSS/SGA kids as she has seen many that

> had

> > poor results. I told her that I had tons of data (compliments of

> Jen

> > Salem..Thx..I owe u one but she said there hasn't been

> > inconclusive blah blah blah. I was kind of discouraged because of

> > her different views on our kids. One would think that she would

> know

> > RSS kids are at risk for Hypoglocemia.

> >

> > On a good note- visited the endo and Isaac's TSH and T-4 levels

> are

> > good and he has gained 11 oz & 3/4 " in a month!!! YEAH! We don't

> > have to do blood work again until december but he is scheduled

for

> a

> > flu shot next week I did ask the endo about bone scan and she

> > said they don't usually do it until they reach 2 years of age.

Any

> > one had it done earlier? Just curious. She also told me that RSS

> is

> > not an automatic " qualification " for growth hormone therapy.

THere

> > has to be SGA/ failure to thrive or GH deficency.

> >

> > I gotta go wake him up to eat..Oct. 19th he will be 9 mos and

then

> > we can start adding cornstarch to the last bottle..I am counting

> the

> > days !!<wink>

> >

> > Mimi

> > Mom to Isaac (RSS, hypothyroidism, almost 9 mos, 11 lbs, 15 oz

> > 24 1/4 " long)

> >

> > P.S.- Sorry for the awful spelling..my eyes are getting heavy.

[Guest guest]

Hi Mimi,

We live in Ohio between Cincinnati and Dayton. Autumn was full term

born at 38 1/2 weeks at 18 1/2 inches and 5lbs 6.8 oz head circ was

31 3/4 cent. she is now 12 lbs 15 oz, 24 inches, and head circ is

43.5 cent right around the 50th percentile, when she was born it was

under the 3rd, so her head growth has been amazing. Everything else

has fallen and remained further off the charts than original. She

did not start to look RSS until she was about one month old, but I

had no idea because I had never heard of it until she was 7 months

old at her genetisist. AT birth, they thought she was very skinny

and they had to keep her under warmers, she could not maintain her

temp. She appeared post term, bluish with dry cracked skin, really

long nails, and a bunch of other things I never knew nurses and docs

look at, appeared post term except her size. It was strange. No one

knew anything, just said she was small. They couldn't figure it out.

Her ped couldn't understand why her body wasn't growing and catching

up like most babies born that size do, but her head was right on

target, so off to the genetisist we went and here I am. How is

Isaac's appetite? Does he have a g-tube or special formula?

mom to Autumn and 2 boys

>

> Hi -

>

> Wow! Our babies are soo close that is really neat..now I know who

to

> ask about " age related questions " If you don't mind me

> asking...what state are you in? We are in Texas. Have you posted

> pics of Autumn yet? How much did she weigh and what was her length

> when she was born? Was she full term? Isaac was born at 39 weeks

and

> weighed 4 lbs 12oz and was 15 " . Thanks for your post!!

>

>

>

> Mimi