Hi I'm new.

[Guest guest]

Hello Everyone,

my name is .. and i just found out my 4yr old son , has

RSS. We live in Alaska and i think that is part of the reason it

took so long to find out. when my son was 6 months old i started to

notice that he wasn't growing as much as most other children. the

peditricians kept telling me that i was worring over nothing and that

he would just " catch up " one day. now finally 31/2 years later i

realize that i wasn't crazy or parinoid. lol. and now i'm trying to

learn everything i can. my son is now 4 and is 34inches tall and

weighs 26 lbs.. he's never had to get a g-tube... but he doesn't eat

all that well. i just have a few questions... and i'd like to talk

to other parents going through the same things.

How common is it to have it run in familys?

are there any bad side effects to growth hormone therpy?

what are the speech problems? my son doesn't talk very well.. my

husband and i can understand him.. but i've noticed that most people

have a hard time. does that count?

do RSS children tend to get sick more often then other children? it

seems like every time there is a cold or flu virus floating around my

son get's it. is this normal for rss or not?

and last but not least... does anyone know of anyone in Alaska that

has a RSS child that would be willing to meet me? )

Thanks,

[Guest guest]

Hi ,

Welcome to our group. I hope we can answer your questions.

First there are members of our group in Alaska. I hpe they will

respond with their location.

Second, growth hormane has very few side affects. Since it is a

syntheic form of the growth hormone our bodies produce it

should be harmless. My son has been on it since May and he

hasn't shown any side affects.

As for getting colds etc. RSS kids have about the same

incidence of colds as other kids. However, many seem to get

them worse they other kids.

Speech delays are very common among RSS kids. My son did

not start talking until he was 3 1/2. Once he did, he just took off

but for the longest time he was verry hard to undestand. Speech

therapy has been a big help. The school system is required to

provide therapy for school age children. You might want to

contact the Special Education dept of your local public school.

As for your other questions. RSS does not run in families. It is a

spontaneous genetic defect. It is very very rare for RSS to occur

twice in a family although it has.

Last, if you are willing to travel there is convention in Chicago in

July. It is put on by the Magic Foundation and RSS is one of the

growth disorders whichh is represented there. The last

convention I attended, there were almost 50 families there with

an RSS child.

I hope this answers your questions. Please feel free to ask

anything at any time.

Ken M

By the way, I am in New Hampshire. We have members all over

the world. Austrialia, New Zealand, Sweden, Isreal, Mexico and

that very remote country -- Canada.

> Hello Everyone,

> my name is .. and i just found out my 4yr old son ,

has

> RSS. We live in Alaska and i think that is part of the reason it

> took so long to find out. when my son was 6 months old i

started to

> notice that he wasn't growing as much as most other children.

the

> peditricians kept telling me that i was worring over nothing and

that

> he would just " catch up " one day. now finally 31/2 years later i

> realize that i wasn't crazy or parinoid. lol. and now i'm trying to

> learn everything i can. my son is now 4 and is 34inches tall

and

> weighs 26 lbs.. he's never had to get a g-tube... but he doesn't

eat

> all that well. i just have a few questions... and i'd like to talk

> to other parents going through the same things.

> How common is it to have it run in familys?

> are there any bad side effects to growth hormone therpy?

> what are the speech problems? my son doesn't talk very well..

my

> husband and i can understand him.. but i've noticed that most

people

> have a hard time. does that count?

> do RSS children tend to get sick more often then other

children? it

> seems like every time there is a cold or flu virus floating around

my

> son get's it. is this normal for rss or not?

> and last but not least... does anyone know of anyone in Alaska

that

> has a RSS child that would be willing to meet me? )

> Thanks,

>

[Guest guest]

Thanks for the info Ken. the only reason i was asking about it

running in familys, is after allen was dignosed and i started reading

up on it. It seemed like my sister has most of the traits... just

made me wonder. Hopefully i'll be able to go to chicago we plan on

going to minnesota in july to see family and illinois isn't that far

of a side trip. i'd really like to get more information on the

convention.

Thanks,

> > Hello Everyone,

> > my name is .. and i just found out my 4yr old son ,

> has

> > RSS. We live in Alaska and i think that is part of the reason

it

> > took so long to find out. when my son was 6 months old i

> started to

> > notice that he wasn't growing as much as most other children.

> the

> > peditricians kept telling me that i was worring over nothing and

> that

> > he would just " catch up " one day. now finally 31/2 years later i

> > realize that i wasn't crazy or parinoid. lol. and now i'm trying

to

> > learn everything i can. my son is now 4 and is 34inches tall

> and

> > weighs 26 lbs.. he's never had to get a g-tube... but he doesn't

> eat

> > all that well. i just have a few questions... and i'd like to

talk

> > to other parents going through the same things.

> > How common is it to have it run in familys?

> > are there any bad side effects to growth hormone therpy?

> > what are the speech problems? my son doesn't talk very well..

> my

> > husband and i can understand him.. but i've noticed that most

> people

> > have a hard time. does that count?

> > do RSS children tend to get sick more often then other

> children? it

> > seems like every time there is a cold or flu virus floating

around

> my

> > son get's it. is this normal for rss or not?

> > and last but not least... does anyone know of anyone in Alaska

> that

> > has a RSS child that would be willing to meet me? )

> > Thanks,

> >

[Guest guest]

Hi

Welcome to the group...

I'm sure you will find lots of answers and heaps of support here!

Usually when your child is first diagnosed you have zillions of

questions - we've all been there so don't feel shy about asking

asking and asking (lol)

My son is 3 ( on Tuesday) he is 31 inches (84cms) and 10.5kgs (can't

do the maths for lbs!!) He has a g-tube and it has really helped him

to gain weight.

You said in your email that you weren't sure if your son needed

speech therapy or not. Finlay has speech therapy once a month at the

moment - he is doing really well with it. The therapists rule of

thumb is that by the age of 3 - 80% of what a child says should be

able to be understood by a stranger. Finlay's single words are

pretty much intelligible (in context) but when he starts to put words

together - he really needs me there to translate !! You said that you

and your husband can understand - if at the age of 4 most of

the people he comes into contact with have a hard time understanding

him then my guess would be that Speech therapy would definately help

him.

Once again welcome to the group - I'm looking forward to hearing more

about you and

Good Luck

in New Zealand

Mum to Finlay nearly 3, 10.5kgs, 84cms, g-tube and Logan 6 months

[Guest guest]

Hi ,

Thanks. I'm gonna try and find out where i can get some help for my

son on monday and see if i can get him into speech therepy. I hope

my child will benefit from it.

> Hi

> Welcome to the group...

> I'm sure you will find lots of answers and heaps of support here!

> Usually when your child is first diagnosed you have zillions of

> questions - we've all been there so don't feel shy about asking

> asking and asking (lol)

> My son is 3 ( on Tuesday) he is 31 inches (84cms) and 10.5kgs

(can't

> do the maths for lbs!!) He has a g-tube and it has really helped

him

> to gain weight.

> You said in your email that you weren't sure if your son needed

> speech therapy or not. Finlay has speech therapy once a month at

the

> moment - he is doing really well with it. The therapists rule of

> thumb is that by the age of 3 - 80% of what a child says should be

> able to be understood by a stranger. Finlay's single words are

> pretty much intelligible (in context) but when he starts to put

words

> together - he really needs me there to translate !! You said that

you

> and your husband can understand - if at the age of 4 most of

> the people he comes into contact with have a hard time

understanding

> him then my guess would be that Speech therapy would definately

help

> him.

> Once again welcome to the group - I'm looking forward to hearing

more

> about you and

> Good Luck

>

> in New Zealand

> Mum to Finlay nearly 3, 10.5kgs, 84cms, g-tube and Logan 6 months

[Guest guest]

Hi Ken & everyone,

I thought I would let those of you who know I live in Alaska that I did e-mail

off-list. I may not post much on the list right now, but I'm still here,

reading! Lots of other stuff going on, more about that soon.

Charissa's mom

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