Hi? Need advice... We're new at this

[Guest guest]

Hi! Um... I don't know where to start. My husband and I just found

out that our oldest daughter, Alyssa (16 months) has -Silver.

She is a mild/moderate case, but is experiencing the developmental

delays, lack of weight gain, etc. It's rather odd to see her at 16

months and weighing in at 11 lbs, but her 4 month old sister weighs

almost 13 lbs and is wearing 6-9 months clothing! ;-) We have read a

lot about RSS, but... it doesn't do much when you're actually LIVING

it, as I'm sure you all know... So my husband and I have been

searching for other parents of RSS kids to share info with and to get

an idea of what to expect as Alyssa gets older. Could anyone help us

out??

Thanks!

EJ

[Guest guest]

Hi ,

Welcome to our group. I hope we can help you. We will be glad to

answer any questions you have.

Let me give you a little background. I have a son who has RSS. His

name is and he is a little over 5. We recently started him on

growth hormone. It is too early to tell if we are getting positive

results.

was first diagnosed when he was about a year old because he

dropped from the 10th percentile to about the 3rd in just a few months.

A few months after discovering he had RSS his docotor started him on

periactin. It is an anithistamine that has the side affect of

stimulating appetite. That worked well for quite a while even though

it seemed to be not working. Whenever we stopped for a few days his

appetite would fall off dramatically.

He was late in everything, standing, walking, talking etc. he didn't

take his first stpes until he was 18 months old. he didn't really talk

until he was almost 3 1/2. He did learn sign language and knew almost

150 signs by age 3.

He has has sensory integration issues. He is a sensory avoider and

uses toys etc as a barrier in school to keep other kids away.

Otherwise, he is a happy, healthy little boy. Even though he is over

5, size wise he is about the size of a typical 2 year old.

He had a brief period where he had a reflux problem but that went away

quickly. He has not had any problem with hypoglycemia or night sweats

like many on this list. We have been very very lucky and have managed

to avoid a feeding tube. Again many on this list have children with

feeding tubes and they report it has been very beneficial because

their children's appetite has been almost non existent.

has some developmental delays and he is receiving speech and O/T

therapy through the public school system. He started his therapies

through the Early Intervention program. You may want to consider this

for Alyssa. Early Intervention was somewhat helpful in getting

into therapy in the public school when he turned 3. Schools are

required to provide services for children over 3 under the IDEA law

and under section 504 of the Disabilities Rights act. Once you enter

the public school system you may have to keep an eye on them because

they are over worked, understaffed and under payed, so they are not

always up to doing what may be required. A lot depends on your

community. But at first I would contact Early Intervention and see

what they can provide for you. Also, do not rule out Medicaid or Katy

Beckett, no matter what your financial circumstances. Again, early

Intervention should be able to provide some guidance here as well.

Please keep in mind that not all children have all the symptoms of RSS

and some have more severe symptoms than others with the most troubling

being the lack of appetite and refusal to eat.

So far there is no universally accepted treatment of RSS. Much is up

to the individual doctor. Many do however usually treat the lack of

appetite with periactin or feeding tube if necessary. Some then follow

with growth hormone. Again this depends on your childs circumstances.

Many of us have tried boosting the calories in the food. we do

thinf=gs like adding kayro syrup to Gogurts etc. or adding oil or

butter to cereal etc. We also look for the highest calorie foods we

can find like Gogurts, Ball Park hotdogs etc. I used to be able to

walk into a grocery store and tell you the calories/ounce of almost

any food.

There are a few experts on RSS. One is a Dr. Harbison in New York and

another is a Dr. Stanhope in London, England. A third is a Dr. Wolman

in Germany. I think there maybe a couple of others but I forget who

they are at the moment.

Finally, I believe ( just my opinion ) Alyssa will be fine. Rss is not

life threatening condition and as far as anyone knows people with RSS

live long, happy and healthy lives. Of course, the day to day dealing

with RSS can wear you down and add to your personal and family stress.

Been there and done that as evidenced by many of my previous posts on

how we have on many many occasions started with an ant hill and have

made life size recreations of the Himalayian mountains in our back yard.

Anyway, welcome to our group and I hope this helps.

Ken M

> Hi! Um... I don't know where to start. My husband and I just found

> out that our oldest daughter, Alyssa (16 months) has -Silver.

> She is a mild/moderate case, but is experiencing the developmental

> delays, lack of weight gain, etc. It's rather odd to see her at 16

> months and weighing in at 11 lbs, but her 4 month old sister weighs

> almost 13 lbs and is wearing 6-9 months clothing! ;-) We have read a

> lot about RSS, but... it doesn't do much when you're actually LIVING

> it, as I'm sure you all know... So my husband and I have been

> searching for other parents of RSS kids to share info with and to get

> an idea of what to expect as Alyssa gets older. Could anyone help us

> out??

>

> Thanks!

> EJ

[Guest guest]

Hi ,

Welcome to our group. I hope we can help you. We will be glad to

answer any questions you have.

Let me give you a little background. I have a son who has RSS. His

name is and he is a little over 5. We recently started him on

growth hormone. It is too early to tell if we are getting positive

results.

was first diagnosed when he was about a year old because he

dropped from the 10th percentile to about the 3rd in just a few months.

A few months after discovering he had RSS his docotor started him on

periactin. It is an anithistamine that has the side affect of

stimulating appetite. That worked well for quite a while even though

it seemed to be not working. Whenever we stopped for a few days his

appetite would fall off dramatically.

He was late in everything, standing, walking, talking etc. he didn't

take his first stpes until he was 18 months old. he didn't really talk

until he was almost 3 1/2. He did learn sign language and knew almost

150 signs by age 3.

He has has sensory integration issues. He is a sensory avoider and

uses toys etc as a barrier in school to keep other kids away.

Otherwise, he is a happy, healthy little boy. Even though he is over

5, size wise he is about the size of a typical 2 year old.

He had a brief period where he had a reflux problem but that went away

quickly. He has not had any problem with hypoglycemia or night sweats

like many on this list. We have been very very lucky and have managed

to avoid a feeding tube. Again many on this list have children with

feeding tubes and they report it has been very beneficial because

their children's appetite has been almost non existent.

has some developmental delays and he is receiving speech and O/T

therapy through the public school system. He started his therapies

through the Early Intervention program. You may want to consider this

for Alyssa. Early Intervention was somewhat helpful in getting

into therapy in the public school when he turned 3. Schools are

required to provide services for children over 3 under the IDEA law

and under section 504 of the Disabilities Rights act. Once you enter

the public school system you may have to keep an eye on them because

they are over worked, understaffed and under payed, so they are not

always up to doing what may be required. A lot depends on your

community. But at first I would contact Early Intervention and see

what they can provide for you. Also, do not rule out Medicaid or Katy

Beckett, no matter what your financial circumstances. Again, early

Intervention should be able to provide some guidance here as well.

Please keep in mind that not all children have all the symptoms of RSS

and some have more severe symptoms than others with the most troubling

being the lack of appetite and refusal to eat.

So far there is no universally accepted treatment of RSS. Much is up

to the individual doctor. Many do however usually treat the lack of

appetite with periactin or feeding tube if necessary. Some then follow

with growth hormone. Again this depends on your childs circumstances.

Many of us have tried boosting the calories in the food. we do

thinf=gs like adding kayro syrup to Gogurts etc. or adding oil or

butter to cereal etc. We also look for the highest calorie foods we

can find like Gogurts, Ball Park hotdogs etc. I used to be able to

walk into a grocery store and tell you the calories/ounce of almost

any food.

There are a few experts on RSS. One is a Dr. Harbison in New York and

another is a Dr. Stanhope in London, England. A third is a Dr. Wolman

in Germany. I think there maybe a couple of others but I forget who

they are at the moment.

Finally, I believe ( just my opinion ) Alyssa will be fine. Rss is not

life threatening condition and as far as anyone knows people with RSS

live long, happy and healthy lives. Of course, the day to day dealing

with RSS can wear you down and add to your personal and family stress.

Been there and done that as evidenced by many of my previous posts on

how we have on many many occasions started with an ant hill and have

made life size recreations of the Himalayian mountains in our back yard.

Anyway, welcome to our group and I hope this helps.

Ken M

> Hi! Um... I don't know where to start. My husband and I just found

> out that our oldest daughter, Alyssa (16 months) has -Silver.

> She is a mild/moderate case, but is experiencing the developmental

> delays, lack of weight gain, etc. It's rather odd to see her at 16

> months and weighing in at 11 lbs, but her 4 month old sister weighs

> almost 13 lbs and is wearing 6-9 months clothing! ;-) We have read a

> lot about RSS, but... it doesn't do much when you're actually LIVING

> it, as I'm sure you all know... So my husband and I have been

> searching for other parents of RSS kids to share info with and to get

> an idea of what to expect as Alyssa gets older. Could anyone help us

> out??

>

> Thanks!

> EJ