Re: Questions and update on Pernille in Norway

[Guest guest]

Hi Stine,

You're right. We haven't heard from you in a very long time. Glad to

see that you are making some progress.

You asked about growth hormone. I am very much for it. It has helped

my son a lot. We have not noticed any side affects. The growth

hormone combined with the periactin to help his appetite are working

very well together. Currently my son is 8.5 years old, 124 cm and

22kg. He has grown almost 11 cm in the last year. Before growth

hormone we were lucky if he grew 5 cm a year. It has taken a couple

of years for the growth hormone and pericatin to really start working

but now we are seeing some great results.

Can I ask a question. What did you mean when you said you have no

control over where e1 lives. I think something got lost in

translating that part in English.

I would love to meet you but we live in New Hampshire but we are

almost 1650 KM from Orlando, Fla. There are some on this list from

Florida who could probably meet you. I know of at least one adult who

has RSS and lives near there. She will hopefully respond soon.

If you have any questions, please feel free to ask.

By the way, there is a Dr. Stanhope in London England who is an

authority on RSS. Since, you are traveling in May, you might want to

consider a stop over in the UK to see him.

I hope this helps.

Ken M

>

> Hi e1.

>

> Sorry i havent been around for a long time. Things is taking so

long. We finally got an

> apponintment to go to Sweden to se a doc there. At Dronning Silvias

childrens hospital.

> We are going over there before christmas. We are going to talk

about growth hormones.

> Pernilles doctor knows to little and want them to say s or no. Do

any of you have any

> thoughts about using growth hormones?

>

> We are coming to USA on the 15 of may 2006. We are going to Orlando

and staying for

> almos 3 weeks. It would be so much fun if we could meed anyone of

you. We have no

> contact with anyone with RSS in Norway. I dont have full control of

where e1 lives. Hope

> we can arrange a meeting. We are going to travel some so we can

drive to you if it is not

> tooooo far...........lol

>

> Pernille is doing ok. She has gotten a spesial trainer in kider

garden. We are using signs so

> she is not to frustrated. She has problem pronaunsing words. She is

getting taller, it just

> isnt going in fast speed. She is now 3 yers, her weight is 10,5

kilos and she is 84 cm.

>

> We have problems with pants. Do anyone of you know any brands of

clothing that fits little

> girls who does not use dipers and are skinny. All of her pants are

falling of......Pls let me

> know, I can order online.

>

> Love Stine mom to Kristoffer 5 and Pernille 3 with Silver Russel

syndrome

>

[Guest guest]

thank you for your respond.

Answer to your question. I dont know where every everyone lives.....

Thank you for some good piece og advise.

Stine

> >

> > Hi e1.

> >

> > Sorry i havent been around for a long time. Things is taking so

> long. We finally got an

> > apponintment to go to Sweden to se a doc there. At Dronning Silvias

> childrens hospital.

> > We are going over there before christmas. We are going to talk

> about growth hormones.

> > Pernilles doctor knows to little and want them to say s or no. Do

> any of you have any

> > thoughts about using growth hormones?

> >

> > We are coming to USA on the 15 of may 2006. We are going to Orlando

> and staying for

> > almos 3 weeks. It would be so much fun if we could meed anyone of

> you. We have no

> > contact with anyone with RSS in Norway. I dont have full control of

> where e1 lives. Hope

> > we can arrange a meeting. We are going to travel some so we can

> drive to you if it is not

> > tooooo far...........lol

> >

> > Pernille is doing ok. She has gotten a spesial trainer in kider

> garden. We are using signs so

> > she is not to frustrated. She has problem pronaunsing words. She is

> getting taller, it just

> > isnt going in fast speed. She is now 3 yers, her weight is 10,5

> kilos and she is 84 cm.

> >

> > We have problems with pants. Do anyone of you know any brands of

> clothing that fits little

> > girls who does not use dipers and are skinny. All of her pants are

> falling of......Pls let me

> > know, I can order online.

> >

> > Love Stine mom to Kristoffer 5 and Pernille 3 with Silver Russel

> syndrome

> >

>

[Guest guest]

Hi Stine. Nice to meet you and Pernille. Hope you enjoy your stay

in Florida - sounds wonderful. I have the same problem with pants

for Ian (2.5 yrs - 9.4 kilos) and it's very frustrating. I've been

sewing the waist on either sides. Gymboree is great.

Our best to you.

- H

>

> Hi e1.

>

> Sorry i havent been around for a long time. Things is taking so

long. We finally got an

> apponintment to go to Sweden to se a doc there. At Dronning

Silvias childrens hospital.

> We are going over there before christmas. We are going to talk

about growth hormones.

> Pernilles doctor knows to little and want them to say s or no. Do

any of you have any

> thoughts about using growth hormones?

>

> We are coming to USA on the 15 of may 2006. We are going to

Orlando and staying for

> almos 3 weeks. It would be so much fun if we could meed anyone of

you. We have no

> contact with anyone with RSS in Norway. I dont have full control

of where e1 lives. Hope

> we can arrange a meeting. We are going to travel some so we can

drive to you if it is not

> tooooo far...........lol

>

> Pernille is doing ok. She has gotten a spesial trainer in kider

garden. We are using signs so

> she is not to frustrated. She has problem pronaunsing words. She

is getting taller, it just

> isnt going in fast speed. She is now 3 yers, her weight is 10,5

kilos and she is 84 cm.

>

> We have problems with pants. Do anyone of you know any brands of

clothing that fits little

> girls who does not use dipers and are skinny. All of her pants are

falling of......Pls let me

> know, I can order online.

>

> Love Stine mom to Kristoffer 5 and Pernille 3 with Silver Russel

syndrome

>

[Guest guest]

Ken,

Hi. It's Reah. Hope you and your are well:)Would

you happen to know if any other families live near me?

I live in Athens, Ga. Thank you so much for your time.

God Bless,

Reah and Chloe:)

--- kmerrith wrote:

> Hi Stine,

>

> You're right. We haven't heard from you in a very

> long time. Glad to

> see that you are making some progress.

>

> You asked about growth hormone. I am very much for

> it. It has helped

> my son a lot. We have not noticed any side affects.

> The growth

> hormone combined with the periactin to help his

> appetite are working

> very well together. Currently my son is 8.5 years

> old, 124 cm and

> 22kg. He has grown almost 11 cm in the last year.

> Before growth

> hormone we were lucky if he grew 5 cm a year. It has

> taken a couple

> of years for the growth hormone and pericatin to

> really start working

> but now we are seeing some great results.

>

> Can I ask a question. What did you mean when you

> said you have no

> control over where e1 lives. I think something got

> lost in

> translating that part in English.

>

> I would love to meet you but we live in New

> Hampshire but we are

> almost 1650 KM from Orlando, Fla. There are some on

> this list from

> Florida who could probably meet you. I know of at

> least one adult who

> has RSS and lives near there. She will hopefully

> respond soon.

>

>

> If you have any questions, please feel free to ask.

>

> By the way, there is a Dr. Stanhope in London

> England who is an

> authority on RSS. Since, you are traveling in May,

> you might want to

> consider a stop over in the UK to see him.

>

>

> I hope this helps.

>

> Ken M

>

>

>

>

>

> >

> > Hi e1.

> >

> > Sorry i havent been around for a long time. Things

> is taking so

> long. We finally got an

> > apponintment to go to Sweden to se a doc there. At

> Dronning Silvias

> childrens hospital.

> > We are going over there before christmas. We are

> going to talk

> about growth hormones.

> > Pernilles doctor knows to little and want them to

> say s or no. Do

> any of you have any

> > thoughts about using growth hormones?

> >

> > We are coming to USA on the 15 of may 2006. We are

> going to Orlando

> and staying for

> > almos 3 weeks. It would be so much fun if we could

> meed anyone of

> you. We have no

> > contact with anyone with RSS in Norway. I dont

> have full control of

> where e1 lives. Hope

> > we can arrange a meeting. We are going to travel

> some so we can

> drive to you if it is not

> > tooooo far...........lol

> >

> > Pernille is doing ok. She has gotten a spesial

> trainer in kider

> garden. We are using signs so

> > she is not to frustrated. She has problem

> pronaunsing words. She is

> getting taller, it just

> > isnt going in fast speed. She is now 3 yers, her

> weight is 10,5

> kilos and she is 84 cm.

> >

> > We have problems with pants. Do anyone of you know

> any brands of

> clothing that fits little

> > girls who does not use dipers and are skinny. All

> of her pants are

> falling of......Pls let me

> > know, I can order online.

> >

> > Love Stine mom to Kristoffer 5 and Pernille 3 with

> Silver Russel

> syndrome

> >

>

>

>

>

>

__________________________________

Yahoo! FareChase: Search multiple travel sites in one click.

http://farechase.yahoo.com

[Guest guest]

Ken,

Hi, me again. Just wandering, how long was your son

an gh before you started to notice a difference? Our

ped endo only wants to keep chloe on it for 9 months,

he says he would be able to tell if she would grow

better with it in that short amount of time. What do

you think? Other parents are saying it took longer to

get the results that they wanted. Would you agree?

What should I do if he wants to take her off?We have

only been on it now for four months.Do you ever come

to Ga?

:):),

Reah and Chloe:)

--- kmerrith wrote:

> Hi Stine,

>

> You're right. We haven't heard from you in a very

> long time. Glad to

> see that you are making some progress.

>

> You asked about growth hormone. I am very much for

> it. It has helped

> my son a lot. We have not noticed any side affects.

> The growth

> hormone combined with the periactin to help his

> appetite are working

> very well together. Currently my son is 8.5 years

> old, 124 cm and

> 22kg. He has grown almost 11 cm in the last year.

> Before growth

> hormone we were lucky if he grew 5 cm a year. It has

> taken a couple

> of years for the growth hormone and pericatin to

> really start working

> but now we are seeing some great results.

>

> Can I ask a question. What did you mean when you

> said you have no

> control over where e1 lives. I think something got

> lost in

> translating that part in English.

>

> I would love to meet you but we live in New

> Hampshire but we are

> almost 1650 KM from Orlando, Fla. There are some on

> this list from

> Florida who could probably meet you. I know of at

> least one adult who

> has RSS and lives near there. She will hopefully

> respond soon.

>

>

> If you have any questions, please feel free to ask.

>

> By the way, there is a Dr. Stanhope in London

> England who is an

> authority on RSS. Since, you are traveling in May,

> you might want to

> consider a stop over in the UK to see him.

>

>

> I hope this helps.

>

> Ken M

>

>

>

>

>

> >

> > Hi e1.

> >

> > Sorry i havent been around for a long time. Things

> is taking so

> long. We finally got an

> > apponintment to go to Sweden to se a doc there. At

> Dronning Silvias

> childrens hospital.

> > We are going over there before christmas. We are

> going to talk

> about growth hormones.

> > Pernilles doctor knows to little and want them to

> say s or no. Do

> any of you have any

> > thoughts about using growth hormones?

> >

> > We are coming to USA on the 15 of may 2006. We are

> going to Orlando

> and staying for

> > almos 3 weeks. It would be so much fun if we could

> meed anyone of

> you. We have no

> > contact with anyone with RSS in Norway. I dont

> have full control of

> where e1 lives. Hope

> > we can arrange a meeting. We are going to travel

> some so we can

> drive to you if it is not

> > tooooo far...........lol

> >

> > Pernille is doing ok. She has gotten a spesial

> trainer in kider

> garden. We are using signs so

> > she is not to frustrated. She has problem

> pronaunsing words. She is

> getting taller, it just

> > isnt going in fast speed. She is now 3 yers, her

> weight is 10,5

> kilos and she is 84 cm.

> >

> > We have problems with pants. Do anyone of you know

> any brands of

> clothing that fits little

> > girls who does not use dipers and are skinny. All

> of her pants are

> falling of......Pls let me

> > know, I can order online.

> >

> > Love Stine mom to Kristoffer 5 and Pernille 3 with

> Silver Russel

> syndrome

> >

>

>

>

>

>

__________________________________________________