Re: 3 months on GH great results!!

[Guest guest]

Congrats!!!

I am still over 800 e-mails behind.

We also have had progress with GH. Dr H said she doesn't have Rss but should

be on GH so we are doing it now. She has grown so much her pants are short, but

she is getting to be skeleton looking again so her intake needs to be more but

getting her to take more is a battle. We go in December back to Children's we

will see. From July to Oct 1 inch!!!!!!!!! That was more than a whole year

before. Her weight has stayed the same unfortunately. Her muscles are stronger

she is walking more, her shoe lift had to be adjusted her asymetry is still the

same. In December we will check her scoliosis level. I hope it has stayed the

same but we were told on GH it can get worse because of the quick growth.We keep

up with her exercises so we hope it improved. Keep your fingers cross.

Have a Happy Thanksgiving!!!

Marcy nas mom

sledkaiser wrote:

I haven't posted in a long time but I just had to let everyone know

about about my sons followup yesturday with Dr. H. When we had to

decide wether to start growth hormone we were scared. Anyway, my son

Jimmy started growth hormone 3 months ago. He was 3yrs 9 months. At

the time he was 91.6 cm and 11.8 kg. Jimmy, at the time was 4.08 SD

below target having only improved .09 sd in the previous 9 months

despite weight gain. He gained 4 pounds in 9 months. At this time he

was only on prevacid and periactin 1.5 mg at night because that is

all he could tolerate. 3 months ago he started growth hormone. He

just turned 4yrs old on sunday the 20th. We followed with Dr.H for

his 3 month check up. His current height is 94.9 and his current

weight is 12 kg. He's been sick the last month and lost weight, but

he was up to 12.4kg a month after starting gh and maintained that

for a month before getting sick. In 3 months he went from below the

3rd percentile to right on the 5th percentile for height. His muscle

mass has also improved and now he can turn the lights on and off by

his self and also unlock the deadbolt on the front door.(Thank god

he's a good listener)He has doubled his growth grate, currently

13.25yr over 3 months. Prior GV before gh 6.58cm/yr over .76yrs.Dr.

H also wrote " He was 4.08 sd below his target having only

improve .09 sd/0.76yrs despite wt gain before gh. Over this period

on gh he has recovered .45sd of his deficit in 3 months. " WOW!!!

Needless to say we are very excited and so so proud of our boy. He

really has been trying so hard dispite what his body is telling him.

He's trying new things like lentil soup, even thought he hates

beans, he ate the entire bowl. Thanks for listening and I hope this

will be encouraging to new parents of a RSS child.

[Guest guest]

Wow, that is aawesome. And you sound so proud, as you should be.

That is just great news. We are also getting ready to start GH with

our son, , who is 3 years 6 months now. I am very scared to

start it because he is such a needlephobic, but it will be better for

him in the long run. I was very optomistic and open-minded about it

until Wednesday when his pediatrician shared with me the results of

's blood work. Looks like he may be a little GH resistant.

His GH levels are fine, so that means he isn't defficient in GH, but

it does show an extremely high level that indicates some resistance,

so I am a little nervous about it. I am going to talk to Dr. H about

this and ask her if 's levels are the norm for RSS kids, or if

he is going to be a non-grower even with GH. I am a little worried

about it, but I am trying not to get too worked up until I talk to

her. Who knows, maybe will have success on it like your

little guy. That would be awesome and I would be as proud as you

are. Congrats on the wonderful news.

Jodi R.

>

> I haven't posted in a long time but I just had to let everyone know

> about about my sons followup yesturday with Dr. H. When we had to

> decide wether to start growth hormone we were scared. Anyway, my

son

> Jimmy started growth hormone 3 months ago. He was 3yrs 9 months. At

> the time he was 91.6 cm and 11.8 kg. Jimmy, at the time was 4.08 SD

> below target having only improved .09 sd in the previous 9 months

> despite weight gain. He gained 4 pounds in 9 months. At this time

he

> was only on prevacid and periactin 1.5 mg at night because that is

> all he could tolerate. 3 months ago he started growth hormone. He

> just turned 4yrs old on sunday the 20th. We followed with Dr.H for

> his 3 month check up. His current height is 94.9 and his current

> weight is 12 kg. He's been sick the last month and lost weight, but

> he was up to 12.4kg a month after starting gh and maintained that

> for a month before getting sick. In 3 months he went from below the

> 3rd percentile to right on the 5th percentile for height. His

muscle

> mass has also improved and now he can turn the lights on and off by

> his self and also unlock the deadbolt on the front door.(Thank god

> he's a good listener)He has doubled his growth grate, currently

> 13.25yr over 3 months. Prior GV before gh 6.58cm/yr over .76yrs.Dr.

> H also wrote " He was 4.08 sd below his target having only

> improve .09 sd/0.76yrs despite wt gain before gh. Over this period

> on gh he has recovered .45sd of his deficit in 3 months. " WOW!!!

> Needless to say we are very excited and so so proud of our boy. He

> really has been trying so hard dispite what his body is telling

him.

> He's trying new things like lentil soup, even thought he hates

> beans, he ate the entire bowl. Thanks for listening and I hope this

> will be encouraging to new parents of a RSS child.

>

[Guest guest]

DITTO!!!! Such wonderful news about his improvement on GH. I love

when I hear stories about the improvements outside of height, on

GH. The muscle mass, weight, and I guess one would call it

independence. Glad he is a good listener too!!! Keep us posted on

his continued growth.

> >

> > I haven't posted in a long time but I just had to let everyone

know

> > about about my sons followup yesturday with Dr. H. When we had

to

> > decide wether to start growth hormone we were scared. Anyway, my

> son

> > Jimmy started growth hormone 3 months ago. He was 3yrs 9 months.

At

> > the time he was 91.6 cm and 11.8 kg. Jimmy, at the time was 4.08

SD

> > below target having only improved .09 sd in the previous 9

months

> > despite weight gain. He gained 4 pounds in 9 months. At this

time

> he

> > was only on prevacid and periactin 1.5 mg at night because that

is

> > all he could tolerate. 3 months ago he started growth hormone.

He

> > just turned 4yrs old on sunday the 20th. We followed with Dr.H

for

> > his 3 month check up. His current height is 94.9 and his current

> > weight is 12 kg. He's been sick the last month and lost weight,

but

> > he was up to 12.4kg a month after starting gh and maintained

that

> > for a month before getting sick. In 3 months he went from below

the

> > 3rd percentile to right on the 5th percentile for height. His

> muscle

> > mass has also improved and now he can turn the lights on and off

by

> > his self and also unlock the deadbolt on the front door.(Thank

god

> > he's a good listener)He has doubled his growth grate, currently

> > 13.25yr over 3 months. Prior GV before gh 6.58cm/yr

over .76yrs.Dr.

> > H also wrote " He was 4.08 sd below his target having only

> > improve .09 sd/0.76yrs despite wt gain before gh. Over this

period

> > on gh he has recovered .45sd of his deficit in 3 months. " WOW!!!

> > Needless to say we are very excited and so so proud of our boy.

He

> > really has been trying so hard dispite what his body is telling

> him.

> > He's trying new things like lentil soup, even thought he hates

> > beans, he ate the entire bowl. Thanks for listening and I hope

this

> > will be encouraging to new parents of a RSS child.

> >

>