Re: Hi I am new to onelist

[Guest guest]

Hi, ! I am so glad you found us! The people on this onelist are so

helpful and supportive of each other. They will help you feel better about

whatever you decide to do. As you have probably read about 's struggles

with Micah, the best advice anyone can give you is to go with your gut feelings.

You have certainly done an excellent job of advocating for her. No one can

advocate for a child like that child's parent.

I am not an expert on growth hormones, only a mom whose son has used them for 8

years. I have read a lot before this onelist and learned a lot since I joined.

I do know that some doctors believe that the best trial for the gh's

effectiveness is to try it for a little while, then stop, and then start again

to see if it works. That sounds like what your daughter's doctor is doing. Do

I agree with it? That does not matter. What matters is your comfort level with

it. Do you feel okay talking to this doctor? Or are you intimidated? How does

your daughter react? Does the doctor answer your questions or at least spend

time with you until you are clear with everything? Those are some of the things

I look for. Believe me, most of us have been through our share of doctor

experiences, some good, some bad.

One thing you must look for, considering your child's age, is signs of early

puberty and checks of bone age. RSS children are known to go through early

puberty and then can stop growing at an early age. There is medication to

supress this, though. What is usually done is a check of bone age on a regular

basis, usually once a year. That is simply an x-ray of the hand or knee. The

growth plates are examined and an age is given to them. Most RSS children have

delayed bone age, which means that they have extra time to grow. But in

puberty, the bone age catches up to, or exceeds the chronological age (your

daughter's real age) and growth will cease. That is because the bones fuse and

no further growth is possible. My 11 year old son started showing signs of

puberty at age 9. There was a distinctive body odor and sweating under his

arms. He is now on medication to supress puberty and he is growing nicely.

I am sure I have run on too long, but I wanted to try to clear up some things

for you ASAP. Write anytime and we all will help you out as best as we can.

Good luck and keep us all posted!

Jodi

[Guest guest]

Welcome to the list!!!! All of us on the list know how you are

feeling. The frustration can be overwhelming. My son, , is going

to be 3 on December 7th and has RSS (he's my second child). He doesn't

eat well at all (no big surprise, huh!) and has a g-tube. Other than

the feeding issue, he's a typical toddler.

I'm originally from MO, what area are you in? I can't write a lot now,

but if you want to " vent " to any one or share any comments, this is the

place to be!

Stacie

Mommy to daughter - (6 yrs.) and son - (almost 3) with RSS,

g-tube and assemetry.

Breaw wrote:

> Hi! my name is and my daughter Alisha has RSS she is 8 years

> old. Wow I have been reading all of your e-mails and I am amazed it

> seemed like my daughter was the only one with RSS. nobody has never

> heard RSS. I was only 16 when I had my daughter. She was only 4 weeks

> early and only weighed 3lbs.from day one she never liked eating. It

> was horrible, and the doctors thought I just wasn't doing my job as a

> mother right I guess. They just kept admitting her to the hospital for

> failure to thrive, then she had reflex at 2 months old. They kept her

> in the hospital for months at a time. They even went as far as taking

> her away from me. I didn't take long to realize that they did wrong

> when she lost even more weight with out me. She was gone only for a

> couple weeks,but them weeks seemed like years That was the worst time

> of my life. I had no family that was close or that wanted to help

> me,and her dad was out of the picture. I got a lawyer on my own and

> got her back. Then I meet my husband when Alisha was only 1 and 1/2

> She was so little and still not eating very well,and was always sick

> with an ear infection, or RSV, or something she would loose weight and

> get dehydrated all the time. At the time we lived in S.D. and the

> doctors just kept telling me she would grow and there is nothing

> wrong. they would not refer me to another doctor, so finally my

> husband now helped me get Alisha to the Mayo Clinic in Rochester MN.

> They knew right away she had RSS so we checked to see if she was

> producing enough growth hormone on her own and they said she was. so

> after awhile she was still was not growing like she should .so we

> started growth hormone shots at home Alisha was about 3and 1/2when we

> started it seemed to help a little they kept increasing the shot. Now

> we live in M.O. because my doctor at the Mayo clinic said he knew a

> doctor here. I don't know what to think he stopped her shot for 6

> months and she never grew started her again and it helped a little now

> she was off again for 6 month and never grew on her own now we have to

> start all over again. I'm not sure what to think about my doctor.Sorry

> this is so long I hope I never bored anyone.I would greatly appreciate

> any impute or suggestions.Thank you,-

[Guest guest]

Hi! Jodi

Thanks for writing back so soon. we do check her bone age and last

time it was 5years and 5

months maybe and she is 8. I have 3 other children now and my 3 year old is the

same size even a little heavier and my 2 year old is right behind them. It is

nice because we share clothes around here but sometimes

Alisha has a hard time understanding why she isn't growing and her sisters are.

She is a little behind in school they tell me that goes with RSS she is only in

the 1st grade. she has been in school since she was 3 in preschool,and headstart

but the teachers use to baby her because she was so small. which didn't help

I am very shy, and quite at the doctors. Yes they intimidate me after the one

doctor took her away from me it scares me when she is sick and not growing. The

doctor is real fast in and out at the appointments. It wasn't like that at the

Mayo clinic but that is so far with 4 kids.

When did your son start giving himself his own shot? my doctor told me that soon

the growth hormone will only have to be given once or twice a month instead of

everyday. I can't wait!

Thanks again,

-

Re: Hi I am new to onelist

Hi, ! I am so glad you found us! The people on this onelist are so

helpful and supportive of each other. They will help you feel better about

whatever you decide to do. As you have probably read about 's struggles

with Micah, the best advice anyone can give you is to go with your gut feelings.

You have certainly done an excellent job of advocating for her. No one can

advocate for a child like that child's parent.

I am not an expert on growth hormones, only a mom whose son has used them for

8 years. I have read a lot before this onelist and learned a lot since I

joined. I do know that some doctors believe that the best trial for the gh's

effectiveness is to try it for a little while, then stop, and then start again

to see if it works. That sounds like what your daughter's doctor is doing. Do

I agree with it? That does not matter. What matters is your comfort level with

it. Do you feel okay talking to this doctor? Or are you intimidated? How does

your daughter react? Does the doctor answer your questions or at least spend

time with you until you are clear with everything? Those are some of the things

I look for. Believe me, most of us have been through our share of doctor

experiences, some good, some bad.

One thing you must look for, considering your child's age, is signs of early

puberty and checks of bone age. RSS children are known to go through early

puberty and then can stop growing at an early age. There is medication to

supress this, though. What is usually done is a check of bone age on a regular

basis, usually once a year. That is simply an x-ray of the hand or knee. The

growth plates are examined and an age is given to them. Most RSS children have

delayed bone age, which means that they have extra time to grow. But in

puberty, the bone age catches up to, or exceeds the chronological age (your

daughter's real age) and growth will cease. That is because the bones fuse and

no further growth is possible. My 11 year old son started showing signs of

puberty at age 9. There was a distinctive body odor and sweating under his

arms. He is now on medication to supress puberty and he is growing nicely.

I am sure I have run on too long, but I wanted to try to clear up some things

for you ASAP. Write anytime and we all will help you out as best as we can.

Good luck and keep us all posted!

Jodi

[Guest guest]

Hi! Stacie

I live in Molberly but doctor in Colombia at the university. I

have 3 other children. Alisha is my oldest. she is a very picky eater. she is

pretty good about getting her shot.

I will write more later.

-

Re: Hi I am new to onelist

Welcome to the list!!!! All of us on the list know how you are feeling. The

frustration can be overwhelming. My son, , is going to be 3 on December 7th

and has RSS (he's my second child). He doesn't eat well at all (no big

surprise, huh!) and has a g-tube. Other than the feeding issue, he's a typical

toddler.

I'm originally from MO, what area are you in? I can't write a lot now, but if

you want to " vent " to any one or share any comments, this is the place to be!

Stacie

Mommy to daughter - (6 yrs.) and son - (almost 3) with RSS, g-tube

and assemetry.

Breaw wrote:

Hi! my name is and my daughter Alisha has RSS she is 8 years old.

Wow I have been reading all of your e-mails and I am amazed it seemed like my

daughter was the only one with RSS. nobody has never heard RSS. I was only 16

when I had my daughter. She was only 4 weeks early and only weighed 3lbs.from

day one she never liked eating. It was horrible, and the doctors thought I just

wasn't doing my job as a mother right I guess. They just kept admitting her to

the hospital for failure to thrive, then she had reflex at 2 months old. They

kept her in the hospital for months at a time. They even went as far as taking

her away from me. I didn't take long to realize that they did wrong when she

lost even more weight with out me. She was gone only for a couple weeks,but them

weeks seemed like years That was the worst time of my life. I had no family that

was close or that wanted to help me,and her dad was out of the picture. I got a

lawyer on my own and got her back. Then I meet my husband when Alisha was only 1

and 1/2 She was so little and still not eating very well,and was always sick

with an ear infection, or RSV, or something she would loose weight and get

dehydrated all the time. At the time we lived in S.D. and the doctors just kept

telling me she would grow and there is nothing wrong. they would not refer me to

another doctor, so finally my husband now helped me get Alisha to the Mayo

Clinic in Rochester MN. They knew right away she had RSS so we checked to see if

she was producing enough growth hormone on her own and they said she was. so

after awhile she was still was not growing like she should .so we started growth

hormone shots at home Alisha was about 3and 1/2when we started it seemed to help

a little they kept increasing the shot. Now we live in M.O. because my doctor

at the Mayo clinic said he knew a doctor here. I don't know what to think he

stopped her shot for 6 months and she never grew started her again and it helped

a little now she was off again for 6 month and never grew on her own now we have

to start all over again. I'm not sure what to think about my doctor.Sorry this

is so long I hope I never bored anyone.I would greatly appreciate any impute or

suggestions.Thank you,-

[Guest guest]

, my son started giving himself his own shot at five or six. We have

something called an Injectease which is simply a holder for the syringe. When

you push a button, it quickly shoots the needle into the skin. Then you just

have to push the " plunger " down and the medicine is injected. It is quick and

relatively painless. We used to load the Injectease, but now Max does it

himself. Our endocrinologist gave it to us. Maybe yours has one for you, too.

I think I left out an important part of my story to you.....Max was taken away

from me, too. It was only for a day, but I still recall the horror I felt. He

was in the hospital for failure to thrive and a new doctor decided he had to

check to make sure I was not starving him. Of course, Max then refused to eat

anything and he was started on ng feedings. I will never forget that day and

how hard I had to fight to get him back. My heart goes out to you!

Jodi

Re: Hi I am new to onelist

Hi! Jodi

Thanks for writing back so soon. we do check her bone age and last

time it was 5years and 5

months maybe and she is 8. I have 3 other children now and my 3 year old is

the same size even a little heavier and my 2 year old is right behind them. It

is nice because we share clothes around here but sometimes

Alisha has a hard time understanding why she isn't growing and her sisters

are.

She is a little behind in school they tell me that goes with RSS she is only

in the 1st grade. she has been in school since she was 3 in preschool,and

headstart but the teachers use to baby her because she was so small. which

didn't help

I am very shy, and quite at the doctors. Yes they intimidate me after the

one doctor took her away from me it scares me when she is sick and not growing.

The doctor is real fast in and out at the appointments. It wasn't like that at

the Mayo clinic but that is so far with 4 kids.

When did your son start giving himself his own shot? my doctor told me that

soon the growth hormone will only have to be given once or twice a month instead

of everyday. I can't wait!

Thanks again,

-

Re: Hi I am new to onelist

Hi, ! I am so glad you found us! The people on this onelist are

so helpful and supportive of each other. They will help you feel better about

whatever you decide to do. As you have probably read about 's struggles

with Micah, the best advice anyone can give you is to go with your gut feelings.

You have certainly done an excellent job of advocating for her. No one can

advocate for a child like that child's parent.

I am not an expert on growth hormones, only a mom whose son has used

them for 8 years. I have read a lot before this onelist and learned a lot since

I joined. I do know that some doctors believe that the best trial for the gh's

effectiveness is to try it for a little while, then stop, and then start again

to see if it works. That sounds like what your daughter's doctor is doing. Do

I agree with it? That does not matter. What matters is your comfort level with

it. Do you feel okay talking to this doctor? Or are you intimidated? How does

your daughter react? Does the doctor answer your questions or at least spend

time with you until you are clear with everything? Those are some of the things

I look for. Believe me, most of us have been through our share of doctor

experiences, some good, some bad.

One thing you must look for, considering your child's age, is signs of

early puberty and checks of bone age. RSS children are known to go through

early puberty and then can stop growing at an early age. There is medication to

supress this, though. What is usually done is a check of bone age on a regular

basis, usually once a year. That is simply an x-ray of the hand or knee. The

growth plates are examined and an age is given to them. Most RSS children have

delayed bone age, which means that they have extra time to grow. But in

puberty, the bone age catches up to, or exceeds the chronological age (your

daughter's real age) and growth will cease. That is because the bones fuse and

no further growth is possible. My 11 year old son started showing signs of

puberty at age 9. There was a distinctive body odor and sweating under his

arms. He is now on medication to supress puberty and he is growing nicely.

I am sure I have run on too long, but I wanted to try to clear up some

things for you ASAP. Write anytime and we all will help you out as best as we

can. Good luck and keep us all posted!

Jodi

[Guest guest]

Jodi,

wow I can't your son started giving his own shot at 5 or 6. Alisha is now

8 and she is o.k. with me or dad giving them but I don't know about her doing it

herself just yet. I have an injectease. They are nice, and easy to use. it

helped me giving them because it was hard at first. I never got one until just a

couple of year ago.

I am new to the internet and I have read alot and learned alot from it ,and

this list. when I took her to the doctor last week her ear looked bad. that day

was the last day of her antibiotic from the week before when she had a really

bad ear infection along with the chicken poxs. She has had 4 sets of tubes put

in and she is still getting earaches.

I read something that said lots of ear infections goes along with RSS kids. it

has been very interesting learning new stuff, and very nice talking to other

people that have dealed with some of the same kind of problems.

I don't know why doctor think right away when you have a kid that is failure

to thrive. That you are not feeding them. I was so young back then and I imagine

I was a little mouthy. but all I wanted to do is get my daughter better, she was

always sick in the hospital when she was little. I always took her to the

doctors and surely if I was not feeding her I wouldn't have taken her all the

time. I would like to see that doctor today and prove to him that it wasn't my

fault she wasn't growing.

Did your son every have to be in any kinds of therapy? Does he still get his

shot? Has it helped him?

Thanks for writing it has been very nice.

-

Re: Hi I am new to onelist

Hi, ! I am so glad you found us! The people on this onelist are so

helpful and supportive of each other. They will help you feel better about

whatever you decide to do. As you have probably read about 's struggles

with Micah, the best advice anyone can give you is to go with your gut feelings.

You have certainly done an excellent job of advocating for her. No one can

advocate for a child like that child's parent.

I am not an expert on growth hormones, only a mom whose son has used them

for 8 years. I have read a lot before this onelist and learned a lot since I

joined. I do know that some doctors believe that the best trial for the gh's

effectiveness is to try it for a little while, then stop, and then start again

to see if it works. That sounds like what your daughter's doctor is doing. Do

I agree with it? That does not matter. What matters is your comfort level with

it. Do you feel okay talking to this doctor? Or are you intimidated? How does

your daughter react? Does the doctor answer your questions or at least spend

time with you until you are clear with everything? Those are some of the things

I look for. Believe me, most of us have been through our share of doctor

experiences, some good, some bad.

One thing you must look for, considering your child's age, is signs of

early puberty and checks of bone age. RSS children are known to go through

early puberty and then can stop growing at an early age. There is medication to

supress this, though. What is usually done is a check of bone age on a regular

basis, usually once a year. That is simply an x-ray of the hand or knee. The

growth plates are examined and an age is given to them. Most RSS children have

delayed bone age, which means that they have extra time to grow. But in

puberty, the bone age catches up to, or exceeds the chronological age (your

daughter's real age) and growth will cease. That is because the bones fuse and

no further growth is possible. My 11 year old son started showing signs of

puberty at age 9. There was a distinctive body odor and sweating under his

arms. He is now on medication to supress puberty and he is growing nicely.

I am sure I have run on too long, but I wanted to try to clear up some

things for you ASAP. Write anytime and we all will help you out as best as we

can. Good luck and keep us all posted!

Jodi

[Guest guest]

Dear ,

I am glad that you decided to join the list, and I see that Jodi has

given you some help! She is one of the most experienced on the list with

an 11 year old, so she is always a great help for all of us. I hope that

Alisha will be able to find some comfort just in knowing that her mom is

corresponding with a lot of other RSS families.

Good Luck with everything.

___________________________________________________________________

Get the Internet just the way you want it.

Free software, free e-mail, and free Internet access for a month!

Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

[Guest guest]

,

Thanks It has been so nice talking with people that has

kids with RSS. Alisha is having a hard time at school right now about her

size. All the kids are a lot bigger than her and don't believe she is really

8, and at home her 3 year old sister is the same size and even a little

heavier.

I always tell her that she is special and will always be little but

sometimes that isn't enough.

I have been learning alot from this list. and yes Jodi seems very nice and

also it has been helpful to talk to her.

-

Re: Hi I am new to onelist

>

>

> Dear ,

>

> I am glad that you decided to join the list, and I see that Jodi has

> given you some help! She is one of the most experienced on the list with

> an 11 year old, so she is always a great help for all of us. I hope that

> Alisha will be able to find some comfort just in knowing that her mom is

> corresponding with a lot of other RSS families.

>

> Good Luck with everything.

>

> ___________________________________________________________________

> Get the Internet just the way you want it.

> Free software, free e-mail, and free Internet access for a month!

> Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

>

> >

[Guest guest]

,

Max only receives speech therapy right now. But he has had physical therapy and

occupational therapies. The physical therapy was stopped because we all thought

that other activities could now take its place. He does karate and jazz dancing

for that. The occupational therapy was stopped because Max reached the limit of

what they could do for him. He has the most beautiful handwriting! I toss that

up to the wonderful occupational therapist he has had.

You are doing a wonderful job for your daughter. I am sure you are correct

about the doctors being harder on you because you are so young. While I am much

older than you (43), I do not look it and many people think I am 30. I guess

when Max was born I did not look much older than you do now. And being a woman

does not help, either. Too often I have felt like the doctors have treated me

more like an hysterical mother instead of an advocate for my son. But having

had my daughter first has made me a little stronger. This is the second time

around for child-rearing for me and you know so much more with the second child!

Please keep me posted on how things are going. I will answer any questions I

can for you. And try to have your daughter give herself her own shots. You can

load the Injectease. She can wipe her leg, or wherever you give the shots, and

she can press the button. I think the kids deal better with these interventions

when they have an active role.

Hang in there! You are doing great!

Jodi

Re: Hi I am new to onelist

[Guest guest]

, thank you for the compliment! Sometimes I think I may be

mouthing off too much and that people are tired of hearing about me and my

11 year old son. You have made my day!

Jodi

Re: Hi I am new to onelist

>

>

>Dear ,

>

>I am glad that you decided to join the list, and I see that Jodi has

>given you some help! She is one of the most experienced on the list with

>an 11 year old, so she is always a great help for all of us. I hope that

>Alisha will be able to find some comfort just in knowing that her mom is

>corresponding with a lot of other RSS families.

>

>Good Luck with everything.

>

>___________________________________________________________________

>Get the Internet just the way you want it.

>Free software, free e-mail, and free Internet access for a month!

>Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

>

>>

[Guest guest]

,

I have one more thought. I know you are concerned about Alisha's size and

it is so hard to deal with when other kids start teasing her. Does she eat

well? There is definitely a positive effect on growth when the kids eat

well and get gh shots. I know it is hard to get them to eat, and so many of

us have relied on tube feedings, but there is medication to help increase

her appetite and get her to eat more. It's called Periactin. If you are

not familiar with it, any one of us can tell you about it. It is a godsend.

Jodi

Re: Hi I am new to onelist

>

>

>,

> Thanks It has been so nice talking with people that has

>kids with RSS. Alisha is having a hard time at school right now about her

>size. All the kids are a lot bigger than her and don't believe she is

really

>8, and at home her 3 year old sister is the same size and even a little

>heavier.

>I always tell her that she is special and will always be little but

>sometimes that isn't enough.

>

>I have been learning alot from this list. and yes Jodi seems very nice and

>also it has been helpful to talk to her.

>

>-

>

>

>

> Re: Hi I am new to onelist

>

>

>>

>>

>> Dear ,

>>

>> I am glad that you decided to join the list, and I see that Jodi has

>> given you some help! She is one of the most experienced on the list with

>> an 11 year old, so she is always a great help for all of us. I hope that

>> Alisha will be able to find some comfort just in knowing that her mom is

>> corresponding with a lot of other RSS families.

>>

>> Good Luck with everything.

>>

>> ___________________________________________________________________

>> Get the Internet just the way you want it.

>> Free software, free e-mail, and free Internet access for a month!

>> Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

>>

>> >

>

>>