Re: New member from Norway

[Guest guest]

welcome Stine!!

welcome to this wonderful group of caring rss families and adults!!

i have a 3 1/2 yr old rss son, christopher he is now 11.4kg and

89.7cm he will be 4 in dec. he is currently taking periactin to

help stimulate his appitite (and it has worked!!!) i dont know much

about the reflux but someone here will be able to help you!! you

really need to get her low blood sugar under control with frequent

feeds maybe katy or jen s. can give you some imput on this?! good

luck and know you are not alone we are here for you!! did you go to

the Magic Foundation's web site? they are a great organization for

families and adults with growth disorders and can give you all kinds

of great info if you become a member!! www.magicfoundation.org

good luck!!

jodie

(nicholas-6 nonrss, christopher-3 1/2 rss 25lbs 1oz 34 3/4 "

periactin, ght genotropin(on hold for 3 more 3m), ADHD(possible),

assmentry(left side 1 cm), johnathon-1yr nonrss)

-- In RSS-Support , " zimba666 " <zimbapus@h...> wrote:

> Hi, I am a mom to a little girl named Pernille and we live in

> Norway. we call it silver-russel over here. The doctors at our

> hospital have after over a year finally come with a name of what

> they think is wrong with my doughter. The problem here is that

noone

> has ever heard about this. And i found this site and so happy that

I

> am not alone.

>

> I feel a little alone in this....... and wondered it anyone has

> experienced anything that we have.

>

> Pernille eats well but is not gaining much waight. She turnes 2 in

> october and is only 74 cm and 7,8 kilos. i have a feeling that

> everyone has problems with eating and keeping the food down,

> reflux.... is this so?

>

> The 11 of august we are going to the hospital to do the bone x-

ray,

> take a sample of the spinalfluid, musclebiopsy, MR of her head.

>

> We have alredy done hormontest and are waiting for a new in

> september. She has low blood suger. She was small at birth, only

44

> cm and 2,5 kilos, she was fullborned.

>

> Sorry my language, its alot of hard words to translate.

>

> Hope anyone are in my shoes.

>

> Love Stine mom of Kristoffer 4 years and Pernille soon 2 years.

[Guest guest]

Stine

Pernille sounds very much like our RSS children on this list. My son

is Storm. He is almost 9 years old and is about the size of a 6 year

old. He still has reflux and suffers from low blood sugar. He always

ate pretty good, but never kept it down very well due to the reflux.

I hope you will find some answers to your questions here!

There is also a great site www.magicfoundation.org that will help you

very much! It is the MAGIC foundation and they have lots of support

and lots of answers!

Blessings to you and welcome to our group!

Carmen, Mom to Paisley 11 1/2 (non-RSS) and Storm age 8y 11m, RSS

[Guest guest]

Dear Stine,

Welcome to the list! We are glad to meet you and are ready to help

you in any way we can. Pernille sounds about the same size as many

of the kids on this list. It also sounds like she has some of the

same problems most of us share.

I was curious why the doctors are doing muscle biopsy and spinal

fluid tests. I don't think either will help to diagnose RSS and both

are, I think, painful. Does she have other problems that these tests

will help them deal with?

Your English is just fine. Much better than our Norweigan, I am

sure! My grandmother's family was from Norway.

We are glad you and your family are here.

Conny, Great-aunt to , 27 months old, 22 lbs and 33 1/2 inches

> Hi, I am a mom to a little girl named Pernille and we live in

> Norway. we call it silver-russel over here. The doctors at our

> hospital have after over a year finally come with a name of what

> they think is wrong with my doughter. The problem here is that

noone

> has ever heard about this. And i found this site and so happy that

I

> am not alone.

>

> I feel a little alone in this....... and wondered it anyone has

> experienced anything that we have.

>

> Pernille eats well but is not gaining much waight. She turnes 2 in

> october and is only 74 cm and 7,8 kilos. i have a feeling that

> everyone has problems with eating and keeping the food down,

> reflux.... is this so?

>

> The 11 of august we are going to the hospital to do the bone x-ray,

> take a sample of the spinalfluid, musclebiopsy, MR of her head.

>

> We have alredy done hormontest and are waiting for a new in

> september. She has low blood suger. She was small at birth, only 44

> cm and 2,5 kilos, she was fullborned.

>

> Sorry my language, its alot of hard words to translate.

>

> Hope anyone are in my shoes.

>

> Love Stine mom of Kristoffer 4 years and Pernille soon 2 years.

[Guest guest]

Hi Conny and all the rest of you nice people here.

Just wanted to answer a couple of your questions. Pernille has been

late on all types of motoricle things. Like walking, crawling etc.

The docktor thought in the beginning that she had a musckular

desease. Because of her size and problems with walking etc. She just

started walking in the start of june. We were so happy, becasue we

almost gave up hope that she could walk. We have been to fysioterapi

2 times each mounth for almost 6 mounths. What was interesting to

read on magic foundation was that I see that RSS kids can have

problems with their muscles. So maybe this is the answer????! WE

hope so. I think the docktor wanted to be sure to leave a muscular

deaseas out. She will be in narkose (asleep) under all this tests.

So she wont feel anything. I am glad.

About the spinal, she has a high laktat on her bloodwork. They cant

figure this out. The only way to get exact result on this they have

to get a sample from her spinal fluid to check the laktat.

She also have high ASAT test, this has to do with the lever. But can

only tell that something is wrong in her system.

I hope i got this right. My understanding is that they dont wont to

leave anything out, they also sayd that sometimes children can have

two problems not just one. Like RSS and andother issue. I really

hope we are facing RSS. This she can live with and have a meaningful

life.

I am so glad to have found this list. I will get my membership at

the magic foundation and love to talk to you all again. And thank

you for taking me seriously in this hard time for me, my housband

Eirik, my son Kristoffer (is prounaonsed ) and my little

girl Pernille.

> > Hi, I am a mom to a little girl named Pernille and we live in

> > Norway. we call it silver-russel over here. The doctors at our

> > hospital have after over a year finally come with a name of what

> > they think is wrong with my doughter. The problem here is that

> noone

> > has ever heard about this. And i found this site and so happy

that

> I

> > am not alone.

> >

> > I feel a little alone in this....... and wondered it anyone has

> > experienced anything that we have.

> >

> > Pernille eats well but is not gaining much waight. She turnes 2

in

> > october and is only 74 cm and 7,8 kilos. i have a feeling that

> > everyone has problems with eating and keeping the food down,

> > reflux.... is this so?

> >

> > The 11 of august we are going to the hospital to do the bone x-

ray,

> > take a sample of the spinalfluid, musclebiopsy, MR of her head.

> >

> > We have alredy done hormontest and are waiting for a new in

> > september. She has low blood suger. She was small at birth, only

44

> > cm and 2,5 kilos, she was fullborned.

> >

> > Sorry my language, its alot of hard words to translate.

> >

> > Hope anyone are in my shoes.

> >

> > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years.

[Guest guest]

Stine,

I just wanted to welcome you to the group! I have a son that was 2

at the end of May, so close in age to Pernille! ) eats

very little by mouth though, so he has a g tube. I am so glad you

found us, so maybe you will not feel so alone anymore. That is a

terrible feeling when you think no one knows what you are going

through. We all do here, so join us and get to know all of us! )

Your friend,

Jodi R.

's mommy

p.s.~ You can see his photos under R. oin the photos section

to the left of these messages.

> > Hi, I am a mom to a little girl named Pernille and we live in

> > Norway. we call it silver-russel over here. The doctors at our

> > hospital have after over a year finally come with a name of what

> > they think is wrong with my doughter. The problem here is that

> noone

> > has ever heard about this. And i found this site and so happy

that

> I

> > am not alone.

> >

> > I feel a little alone in this....... and wondered it anyone has

> > experienced anything that we have.

> >

> > Pernille eats well but is not gaining much waight. She turnes 2

in

> > october and is only 74 cm and 7,8 kilos. i have a feeling that

> > everyone has problems with eating and keeping the food down,

> > reflux.... is this so?

> >

> > The 11 of august we are going to the hospital to do the bone x-

ray,

> > take a sample of the spinalfluid, musclebiopsy, MR of her head.

> >

> > We have alredy done hormontest and are waiting for a new in

> > september. She has low blood suger. She was small at birth, only

44

> > cm and 2,5 kilos, she was fullborned.

> >

> > Sorry my language, its alot of hard words to translate.

> >

> > Hope anyone are in my shoes.

> >

> > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years.

[Guest guest]

Stine,

Please don't ever think your English is not good enough for us to

understand. You are doing an excellent job!

I am sorry that Pernille has to go through so many tests, but at

least she will be asleep. Unfortunately, it IS possible to have

more than one thing going on. My son has RSS, attention deficit

disorder and Tourette Syndrome. I certainly hope, however, that she

does not have any problems with her liver. Sometimes a blood test

comes back with a positive result and then we find out it was just a

mistake. I hope that is the same for your daughter.

Please let us know how the tests turn out. When is she having them

done?

Jodi Z.

[Guest guest]

Hi Jodi.

Thank you for letting me know that you understand my english. It so

many medical terms and words i have never used befor in my life. I

am so glad i am not alone in this. You have a great group here. I am

lucky to have found you all.

When it comes to her liver test, they have been taking bloodwork

once a mounth since last april and they been high everytime,

unfotunately. But the good news is that it isnt anything wrong with

her liver, the test only shows that there is a problem with

something else, like muscular etc...

We are sceduled at the hospital in Tromsø in Norway at the 11.

august and have an follow up appointment on the 2 of september. I

recon we know more by then. I will let you know how it turns out.

> Stine,

>

> Please don't ever think your English is not good enough for us to

> understand. You are doing an excellent job!

>

> I am sorry that Pernille has to go through so many tests, but at

> least she will be asleep. Unfortunately, it IS possible to have

> more than one thing going on. My son has RSS, attention deficit

> disorder and Tourette Syndrome. I certainly hope, however, that

she

> does not have any problems with her liver. Sometimes a blood test

> comes back with a positive result and then we find out it was just

a

> mistake. I hope that is the same for your daughter.

>

> Please let us know how the tests turn out. When is she having

them

> done?

>

> Jodi Z.

[Guest guest]

Stiene,

Welcome to your group, Gaby out daughter will be 2 in October of

these year and weighs 7.27 kilo, if I did my math right. She is also

a good eater and does not have reflux, but for some reason she still

does not gain weight. It is important that Pernille, has psyichal

therapy and Occuptional therapy. Gaby also so do everything, but

once she starting moving, there has been not stoping her, I will be

trying to Potty train her in the next to weeks.

I really wish you the best of luck and my prayers are with you and

your family. This is a great group with lots of information and

wellness to help each other in every way we can.

It is important for your daughter to see a nutrionist also.

Sincerely,

Stella, mom of Gaby Rss almost 2 yrs, Amani non-rss 6 yrs and Andres

non-rss 5 yrs.

> Hi, I am a mom to a little girl named Pernille and we live in

> Norway. we call it silver-russel over here. The doctors at our

> hospital have after over a year finally come with a name of what

> they think is wrong with my doughter. The problem here is that

noone

> has ever heard about this. And i found this site and so happy that

I

> am not alone.

>

> I feel a little alone in this....... and wondered it anyone has

> experienced anything that we have.

>

> Pernille eats well but is not gaining much waight. She turnes 2 in

> october and is only 74 cm and 7,8 kilos. i have a feeling that

> everyone has problems with eating and keeping the food down,

> reflux.... is this so?

>

> The 11 of august we are going to the hospital to do the bone x-

ray,

> take a sample of the spinalfluid, musclebiopsy, MR of her head.

>

> We have alredy done hormontest and are waiting for a new in

> september. She has low blood suger. She was small at birth, only

44

> cm and 2,5 kilos, she was fullborned.

>

> Sorry my language, its alot of hard words to translate.

>

> Hope anyone are in my shoes.

>

> Love Stine mom of Kristoffer 4 years and Pernille soon 2 years.

[Guest guest]

Dear Stine,

I am glad to hear that Pernille will be asleep for her tests. It is

not at all unusual for RSS children to be quite late on motor

milestones. Some of the kids don't walk until 18 or 20 months, so

maybe she is not as far behind as you think. They are late because

they have very low muscle tone, so that is common, too. I hope that

they do not find anything more wrong with her. Please, let us know

how it all comes out. Also, please ask questions if you want to.

Lots of people on this website are experts about RSS. For one thing,

sometimes it is important to be careful when RSS kids are put to

sleep for tests that they have an IV so that their blood sugar does

not go too low when they are not allowed to eat for several hours.

Other people can probably explain this better than I can.

Good luck to you and your family,

Conny, 's great-aunt

> > > Hi, I am a mom to a little girl named Pernille and we live in

> > > Norway. we call it silver-russel over here. The doctors at our

> > > hospital have after over a year finally come with a name of

what

> > > they think is wrong with my doughter. The problem here is that

> > noone

> > > has ever heard about this. And i found this site and so happy

> that

> > I

> > > am not alone.

> > >

> > > I feel a little alone in this....... and wondered it anyone has

> > > experienced anything that we have.

> > >

> > > Pernille eats well but is not gaining much waight. She turnes 2

> in

> > > october and is only 74 cm and 7,8 kilos. i have a feeling that

> > > everyone has problems with eating and keeping the food down,

> > > reflux.... is this so?

> > >

> > > The 11 of august we are going to the hospital to do the bone x-

> ray,

> > > take a sample of the spinalfluid, musclebiopsy, MR of her head.

> > >

> > > We have alredy done hormontest and are waiting for a new in

> > > september. She has low blood suger. She was small at birth,

only

> 44

> > > cm and 2,5 kilos, she was fullborned.

> > >

> > > Sorry my language, its alot of hard words to translate.

> > >

> > > Hope anyone are in my shoes.

> > >

> > > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years.

[Guest guest]

Hi Conny.

Thank you for your consern. Pernilles bloodsuger is low, so i will

have to remind them about that. It is so good tp hear that there are

other families in our shoes.

I will let you know on how it works out.

Stine mom to Kristoffer 4 and Pernille soon 2 rss?

> > > > Hi, I am a mom to a little girl named Pernille and we live

in

> > > > Norway. we call it silver-russel over here. The doctors at

our

> > > > hospital have after over a year finally come with a name of

> what

> > > > they think is wrong with my doughter. The problem here is

that

> > > noone

> > > > has ever heard about this. And i found this site and so

happy

> > that

> > > I

> > > > am not alone.

> > > >

> > > > I feel a little alone in this....... and wondered it anyone

has

> > > > experienced anything that we have.

> > > >

> > > > Pernille eats well but is not gaining much waight. She

turnes 2

> > in

> > > > october and is only 74 cm and 7,8 kilos. i have a feeling

that

> > > > everyone has problems with eating and keeping the food down,

> > > > reflux.... is this so?

> > > >

> > > > The 11 of august we are going to the hospital to do the bone

x-

> > ray,

> > > > take a sample of the spinalfluid, musclebiopsy, MR of her

head.

> > > >

> > > > We have alredy done hormontest and are waiting for a new in

> > > > september. She has low blood suger. She was small at birth,

> only

> > 44

> > > > cm and 2,5 kilos, she was fullborned.

> > > >

> > > > Sorry my language, its alot of hard words to translate.

> > > >

> > > > Hope anyone are in my shoes.

> > > >

> > > > Love Stine mom of Kristoffer 4 years and Pernille soon 2

years.