Re: Any feedback greatly appreciated!

[Guest guest]

-

You must be at your wits end - I can definately understand your frustration,

though my situation is that of " normal " RSS - (ie. little appetite), what I

can vouch for is the G-tube. It's been wonderful for us and though my

daughter was getting close to adequate calories before the tube, now that she

is getting more than enough it has helped tremendously. As for the surgery,

yes it was a scary thing, but Jes' anestesiologists were wonderful and that

helped me put my mind at ease a little. Jes was only " uncomfortable " for a

few days after, now is back to normal with a little more energy. This is my

perspective, hope it helps you a little.

, Mom to (23mos RSS?), (4 1/2)

[Guest guest]

Hi and Steve,

Our son (born 12/10/96) also has a " mild " phenotype for RSS..However, he has a

very poor appetite and was put on periactin for this reason. (He started on

Periactin in May 99 and it only took 3 months for him to " soar " up to the growth

chart for weight. Height did not follow, however, so we are going the GHT

route.

Anyway, it seems very odd to me that at 1200 calories a day your child is not

gaining weight! I'm not sure a G-tube would help????(but, I'm no expert

here..others on the list can help out with this topic)!!! RSS is a very strange

syndrome in that I have never been able to understand from all our specialists

if there is some sort of calorie " processing " fault that these kids have, in

addition to the processing of GH issues that have been hypothesized.

Were either you or your husband really skinny as young children? Is your child

hypotonic (low muscle tone?)

Very curious indeed,

Katy

[Guest guest]

and Steve,

Could Lindsey have an absorption or thyroid problem?

Any feedback greatly appreciated!

From: JBSalem@...

Hello -

Some of you may have gotten our email posted to the Magic_list board

(before

we knew about the RSS-Support board!), so ignore this if you did.

We have a daughter, , who just turned 4 years old and who has been

diagnosed with a mild phenotype of -Silver Syndrome (both Yale

Children's & Cedar Sinai). We moved from CT to Manhattan Beach, CA a year

ago.

has done relatively well - began speech therapy for pronunciation

problems. Saw an orthopedist for her left leg assymetry but they said to

just watch and see. Her height is doing pretty well -- 37 " tall so 0-5th of

standard chart. But her weight has just been a struggle.

We have learned that most RSS kids have little to no appetite, so is

actually abnormal. We have no problem getting her to eat - it's getting her

NOT to eat. She eats all day long, and always has. When she was 18 months

old, she stopped gaining weight for 6 months. We increased her caloric

intake by 30% to 135% of normal by adding Pediasure...she began to gain

weight again.

At 3yrs3 months, she stopped gaining weight again. She has not gained any

weight for TEN months. 26 1/2 pounds at 4 years. But during this same

timeframe, she began preschool and several afterschool athletic activities -

so her calorie expenditure has increased. Her gastro doctor has ruled out

any allergy or malabsorption.

Periactin has been recommended to us by the Magic Foundation, but here are

our concerns. 1) After 2 nights of just 25% dosage was zonked. But

we have since learned from some parents that this does go away after a

while?

But 2) her pediatrician says - increase her appetite to what? Infinitism?

She doesn't have an appetite problem.

Her pediatrician wants to, and has all along wanted to, put in a mic-key

button G-tube. The endocrin doctor says " all RSS kids don't gain weight "

but

is his only RSS patient.... And TEN months of not gaining any

weight? The gastro doctor said " I don't like periactin - it doesn't work. "

(Again, he doesn't have any other RSS patients). Then the gastro doctor

went

on to recommend an experimental appetitite stimulant that has " been working

on AIDS adult patients and has just been tested on 40 pediatric patients at

Baylor " (again, though, no RSS kids).

HELP!!!!! What the heck do we do when every doctor gives us a different

story. is bone thin. I don't care if she is little as long as she

stays on her own curve. But her curve is non-existent!!! She is tired all

the time, and complains that she " wants more energy. " She eats literally

every 15-30 minutes -- all high-calorie foods unless she wants grapes, etc.

She is eating about 1200-1400 calories a day as it is (120-135% of her

needed

caloric intake). My gut instinct is that somehow we need to get another

200+

calories into her a day. But during the daytime, I can't see how we are

going to get any more food into her! So we thought a G-tube would be

better,

just for a couple hours a night.

But that means surgery!

Can anyone with any experience provide any feedback?

& Steve Salem

Parents of (RSS) 1/13/96 and Tyler, 3/8/97

------------------------------------------------------------------------

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[Guest guest]

and Steve:

It does, indeed, sound like eats pretty well. But it is also my

understanding that Periactin somehow will help her keep the weight on.

(Please forgive me if I begin to sound incoherent. I am worn out from Max's

surgery, but I will forge ahead to make my point here.)

Max has taken Periactin for a long time. (Actually, we are not giving it to

him right now - Dr. H. better not be reading this!) In the beginning it did

help him to eat more. Then when he was eating well, it seemed to help him

keep the weight on. Somehow he began to get more bulk on him and the

Periactin helped him maintain it. He was very VERY sensitive to the

medication. We had to gradually increase the dose, as you are doing. We

would start out a little at a time, and increase it every two weeks. That

is what you seem to be doing.

As for the g-tube, well, if she is eating a lot now and not gaining, how

will the g-tube help? Is it just to give her more calories at night in

addition to what she eats during the day? I know it means surgery, but I

have to tell you that it is not too bad. There is pain and discomfort in

the beginning. There is the " pressure " of learning how to use it - and the

sometimes disconnecting of the tube at night and the formula all over the

bed in the morning. But it does take the pressure off you in the long run.

I have to go give Max some pain meds right now. I am a little distracted.

Tell me/us more and maybe we can help you better. Putting in a g-tube is

not fun, but in the long run, it is a cinch and worth it. (I'd stick with

the Periactin for a little longer, though.) Gotta go - he's crying now.

Jodi

Any feedback greatly appreciated!

> From: JBSalem@...

>

> Hello -

>

> Some of you may have gotten our email posted to the Magic_list board

(before

> we knew about the RSS-Support board!), so ignore this if you did.

>

> We have a daughter, , who just turned 4 years old and who has been

> diagnosed with a mild phenotype of -Silver Syndrome (both Yale

> Children's & Cedar Sinai). We moved from CT to Manhattan Beach, CA a year

> ago.

>

> has done relatively well - began speech therapy for pronunciation

> problems. Saw an orthopedist for her left leg assymetry but they said to

> just watch and see. Her height is doing pretty well -- 37 " tall so 0-5th

of

> standard chart. But her weight has just been a struggle.

>

> We have learned that most RSS kids have little to no appetite, so

is

> actually abnormal. We have no problem getting her to eat - it's getting

her

> NOT to eat. She eats all day long, and always has. When she was 18

months

> old, she stopped gaining weight for 6 months. We increased her caloric

> intake by 30% to 135% of normal by adding Pediasure...she began to gain

> weight again.

>

> At 3yrs3 months, she stopped gaining weight again. She has not gained any

> weight for TEN months. 26 1/2 pounds at 4 years. But during this same

> timeframe, she began preschool and several afterschool athletic

activities -

> so her calorie expenditure has increased. Her gastro doctor has ruled out

> any allergy or malabsorption.

>

> Periactin has been recommended to us by the Magic Foundation, but here are

> our concerns. 1) After 2 nights of just 25% dosage was zonked.

But

> we have since learned from some parents that this does go away after a

while?

> But 2) her pediatrician says - increase her appetite to what?

Infinitism?

> She doesn't have an appetite problem.

>

> Her pediatrician wants to, and has all along wanted to, put in a mic-key

> button G-tube. The endocrin doctor says " all RSS kids don't gain weight "

but

> is his only RSS patient.... And TEN months of not gaining any

> weight? The gastro doctor said " I don't like periactin - it doesn't

work. "

> (Again, he doesn't have any other RSS patients). Then the gastro doctor

went

> on to recommend an experimental appetitite stimulant that has " been

working

> on AIDS adult patients and has just been tested on 40 pediatric patients

at

> Baylor " (again, though, no RSS kids).

>

> HELP!!!!! What the heck do we do when every doctor gives us a different

> story. is bone thin. I don't care if she is little as long as

she

> stays on her own curve. But her curve is non-existent!!! She is tired

all

> the time, and complains that she " wants more energy. " She eats literally

> every 15-30 minutes -- all high-calorie foods unless she wants grapes,

etc.

> She is eating about 1200-1400 calories a day as it is (120-135% of her

needed

> caloric intake). My gut instinct is that somehow we need to get another

200+

> calories into her a day. But during the daytime, I can't see how we are

> going to get any more food into her! So we thought a G-tube would be

better,

> just for a couple hours a night.

>

> But that means surgery!

>

> Can anyone with any experience provide any feedback?

>

> & Steve Salem

> Parents of (RSS) 1/13/96 and Tyler, 3/8/97

>

> ------------------------------------------------------------------------

> PERFORM CPR ON YOUR APR!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2121/0/_/229381/_/951997730/

> ------------------------------------------------------------------------

>

>

>

[Guest guest]

Heavy sweating is one of the RSS characteristics. I'm not sure why it

happens, but it does. Max sweats so much that some days he has to change

shirts three times! He is always in short sleeves, even though it is cold

and the rest of us are bundled up in the house. In fact, when we go skiing,

when he takes off his helmet, there is literally steam rising from his head!

Jodi

Any feedback greatly appreciated!

>

>

> > From: JBSalem@...

> >

> > Hello -

> >

> > Some of you may have gotten our email posted to the Magic_list board

> (before

> > we knew about the RSS-Support board!), so ignore this if you did.

> >

> > We have a daughter, , who just turned 4 years old and who has

been

> > diagnosed with a mild phenotype of -Silver Syndrome (both Yale

> > Children's & Cedar Sinai). We moved from CT to Manhattan Beach, CA a

year

> > ago.

> >

> > has done relatively well - began speech therapy for

pronunciation

> > problems. Saw an orthopedist for her left leg assymetry but they said

to

> > just watch and see. Her height is doing pretty well -- 37 " tall so

0-5th

> of

> > standard chart. But her weight has just been a struggle.

> >

> > We have learned that most RSS kids have little to no appetite, so

> is

> > actually abnormal. We have no problem getting her to eat - it's getting

> her

> > NOT to eat. She eats all day long, and always has. When she was 18

> months

> > old, she stopped gaining weight for 6 months. We increased her caloric

> > intake by 30% to 135% of normal by adding Pediasure...she began to gain

> > weight again.

> >

> > At 3yrs3 months, she stopped gaining weight again. She has not gained

any

> > weight for TEN months. 26 1/2 pounds at 4 years. But during this same

> > timeframe, she began preschool and several afterschool athletic

> activities -

> > so her calorie expenditure has increased. Her gastro doctor has ruled

out

> > any allergy or malabsorption.

> >

> > Periactin has been recommended to us by the Magic Foundation, but here

are

> > our concerns. 1) After 2 nights of just 25% dosage was zonked.

> But

> > we have since learned from some parents that this does go away after a

> while?

> > But 2) her pediatrician says - increase her appetite to what?

> Infinitism?

> > She doesn't have an appetite problem.

> >

> > Her pediatrician wants to, and has all along wanted to, put in a mic-key

> > button G-tube. The endocrin doctor says " all RSS kids don't gain

weight "

> but

> > is his only RSS patient.... And TEN months of not gaining any

> > weight? The gastro doctor said " I don't like periactin - it doesn't

> work. "

> > (Again, he doesn't have any other RSS patients). Then the gastro doctor

> went

> > on to recommend an experimental appetitite stimulant that has " been

> working

> > on AIDS adult patients and has just been tested on 40 pediatric patients

> at

> > Baylor " (again, though, no RSS kids).

> >

> > HELP!!!!! What the heck do we do when every doctor gives us a different

> > story. is bone thin. I don't care if she is little as long as

> she

> > stays on her own curve. But her curve is non-existent!!! She is tired

> all

> > the time, and complains that she " wants more energy. " She eats

literally

> > every 15-30 minutes -- all high-calorie foods unless she wants grapes,

> etc.

> > She is eating about 1200-1400 calories a day as it is (120-135% of her

> needed

> > caloric intake). My gut instinct is that somehow we need to get another

> 200+

> > calories into her a day. But during the daytime, I can't see how we are

> > going to get any more food into her! So we thought a G-tube would be

> better,

> > just for a couple hours a night.

> >

> > But that means surgery!

> >

> > Can anyone with any experience provide any feedback?

> >

> > & Steve Salem

> > Parents of (RSS) 1/13/96 and Tyler, 3/8/97

> >

> > ------------------------------------------------------------------------

> > PERFORM CPR ON YOUR APR!

> > Get a NextCard Visa, in 30 seconds! Get rates as low as

> > 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> > Apply NOW!

> > http://click./1/2121/0/_/229381/_/951997730/

> > ------------------------------------------------------------------------

> >

> >

>

>

> ------------------------------------------------------------------------

> MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2122/0/_/229381/_/952019757/

> ------------------------------------------------------------------------

>

>

>

[Guest guest]

HI there glad to see your post. I have a RSS child who's 20 pounds and 32

inches tall she just started periactin again on yesterday. She gets the

rest of her calories from Boost it has 360 calories and she loves that stuff

so after meals, during meals and if she wants it for snacks we give it to

her, my sister is a kidney patient and she gets this other stuff called

Nepro and its 475 cal. So instead of getting her full of food she drinks a

lot and it has lots of vitamins. Ja'Aryn has been 20 pounds for a whole

year. At first I felt the same way Periactin does not work but it helps.

The energy level (metabolism) rate is very high in our children and yes they

will eat every 20-30 min. that is why JaAryn (pronounced J-) is not in

school because they cannot feed her every 12-30 min. But, Ja'Aryn is also

hearing impaired and has a lot of characteristics of a RSS child as soon as

I learn how to post her picture you all can check her out. I'm also looking

for other black parents that has a RSS child because so far it seems I'm the

only one on the list. Strange but it is true. Do you all have other

children, I have a 9 year old normal child, and my family is in denial that

it's nothing wrong with her. Are you all having the same with your family

members. reply when you get a chance, I'm Jackie from Baton Rouge,

Louisiana, it's Mardi Gras time here, I'm a paralegal.

Any feedback greatly appreciated!

> From: JBSalem@...

>

> Hello -

>

> Some of you may have gotten our email posted to the Magic_list board

(before

> we knew about the RSS-Support board!), so ignore this if you did.

>

> We have a daughter, , who just turned 4 years old and who has been

> diagnosed with a mild phenotype of -Silver Syndrome (both Yale

> Children's & Cedar Sinai). We moved from CT to Manhattan Beach, CA a year

> ago.

>

> has done relatively well - began speech therapy for pronunciation

> problems. Saw an orthopedist for her left leg assymetry but they said to

> just watch and see. Her height is doing pretty well -- 37 " tall so 0-5th

of

> standard chart. But her weight has just been a struggle.

>

> We have learned that most RSS kids have little to no appetite, so

is

> actually abnormal. We have no problem getting her to eat - it's getting

her

> NOT to eat. She eats all day long, and always has. When she was 18

months

> old, she stopped gaining weight for 6 months. We increased her caloric

> intake by 30% to 135% of normal by adding Pediasure...she began to gain

> weight again.

>

> At 3yrs3 months, she stopped gaining weight again. She has not gained any

> weight for TEN months. 26 1/2 pounds at 4 years. But during this same

> timeframe, she began preschool and several afterschool athletic

activities -

> so her calorie expenditure has increased. Her gastro doctor has ruled out

> any allergy or malabsorption.

>

> Periactin has been recommended to us by the Magic Foundation, but here are

> our concerns. 1) After 2 nights of just 25% dosage was zonked.

But

> we have since learned from some parents that this does go away after a

while?

> But 2) her pediatrician says - increase her appetite to what?

Infinitism?

> She doesn't have an appetite problem.

>

> Her pediatrician wants to, and has all along wanted to, put in a mic-key

> button G-tube. The endocrin doctor says " all RSS kids don't gain weight "

but

> is his only RSS patient.... And TEN months of not gaining any

> weight? The gastro doctor said " I don't like periactin - it doesn't

work. "

> (Again, he doesn't have any other RSS patients). Then the gastro doctor

went

> on to recommend an experimental appetitite stimulant that has " been

working

> on AIDS adult patients and has just been tested on 40 pediatric patients

at

> Baylor " (again, though, no RSS kids).

>

> HELP!!!!! What the heck do we do when every doctor gives us a different

> story. is bone thin. I don't care if she is little as long as

she

> stays on her own curve. But her curve is non-existent!!! She is tired

all

> the time, and complains that she " wants more energy. " She eats literally

> every 15-30 minutes -- all high-calorie foods unless she wants grapes,

etc.

> She is eating about 1200-1400 calories a day as it is (120-135% of her

needed

> caloric intake). My gut instinct is that somehow we need to get another

200+

> calories into her a day. But during the daytime, I can't see how we are

> going to get any more food into her! So we thought a G-tube would be

better,

> just for a couple hours a night.

>

> But that means surgery!

>

> Can anyone with any experience provide any feedback?

>

> & Steve Salem

> Parents of (RSS) 1/13/96 and Tyler, 3/8/97

>

> ------------------------------------------------------------------------

> PERFORM CPR ON YOUR APR!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2121/0/_/229381/_/951997730/

> ------------------------------------------------------------------------

>

>

[Guest guest]

Thanks Katy -

I had the most amazing conversation with Dr. Harbison of New York this

afternoon, and we will be flying out to see her in several weeks. Sounds

drastic, but we have gotten no where with our current endro and gastro

doctors. In fact, the " experimental " drug that the gastro doctor recommended

we put on has not even been tested in children (Dr. Harbison was

aghast at the recommendation).

All doctors' first thought ( & Dr. H's) when they hear her weight and caloric

intake, is that she has a malabsorption problem. But she has tested

negative. Yes, both my husband and I are very thin and very high metabolism.

My husband is 6'4 " and 190 pounds!!! So definitely inherited the

good/bad of this metabolism, on top of her RSS.

Dr. H, as well as so many of you who have emailed me, have encouraged us to

put back on the Periactin. Basically, although her appetite is

already so strong, the periactin can't hurt! But Dr. H also said that she

agrees with L's pediatrician (based on Dr. H's seeing L), that a mic-key tube

at night is a must. simply needs more calories than she is getting.

Somehow, for whatever reason (just like you said), she is now absorbing the

nutrients.

Reading all these emails about the growth in weight and height that your kids

are getting gives me such hope. We just have to start the treatment!!! 26

pounds for 37 inches tall is too thin. And not gaining even an ounce in

almost a year is bad news for her height.

So... thank you so much for emailing me. I love reading everyone's emails,

and print everything so I can save it for possible future needs!

[Guest guest]

Hi, I have a RSS child who's almost 4 yrs. 32 inches tall and 20 pounds she

just started periactin again, she's never tired she has too much energy even

before the periactin but last night was the first time in over 1yr., that

she has had periactin and Ja'Aryn (pronounced J-) ate a lot but she

burns it off quickly. This morning she had a box of Cheerios in the bed,

wow! Periactin must be working but she also drinks Boost, 360 cal. This may

sound strange but why do RSS kids perspire so much especially in their

hair and on the nose my little girl sweats a lot in her head even when she's

asleep, does anyone know why, please reply if you all know

Any feedback greatly appreciated!

> From: JBSalem@...

>

> Hello -

>

> Some of you may have gotten our email posted to the Magic_list board

(before

> we knew about the RSS-Support board!), so ignore this if you did.

>

> We have a daughter, , who just turned 4 years old and who has been

> diagnosed with a mild phenotype of -Silver Syndrome (both Yale

> Children's & Cedar Sinai). We moved from CT to Manhattan Beach, CA a year

> ago.

>

> has done relatively well - began speech therapy for pronunciation

> problems. Saw an orthopedist for her left leg assymetry but they said to

> just watch and see. Her height is doing pretty well -- 37 " tall so 0-5th

of

> standard chart. But her weight has just been a struggle.

>

> We have learned that most RSS kids have little to no appetite, so

is

> actually abnormal. We have no problem getting her to eat - it's getting

her

> NOT to eat. She eats all day long, and always has. When she was 18

months

> old, she stopped gaining weight for 6 months. We increased her caloric

> intake by 30% to 135% of normal by adding Pediasure...she began to gain

> weight again.

>

> At 3yrs3 months, she stopped gaining weight again. She has not gained any

> weight for TEN months. 26 1/2 pounds at 4 years. But during this same

> timeframe, she began preschool and several afterschool athletic

activities -

> so her calorie expenditure has increased. Her gastro doctor has ruled out

> any allergy or malabsorption.

>

> Periactin has been recommended to us by the Magic Foundation, but here are

> our concerns. 1) After 2 nights of just 25% dosage was zonked.

But

> we have since learned from some parents that this does go away after a

while?

> But 2) her pediatrician says - increase her appetite to what?

Infinitism?

> She doesn't have an appetite problem.

>

> Her pediatrician wants to, and has all along wanted to, put in a mic-key

> button G-tube. The endocrin doctor says " all RSS kids don't gain weight "

but

> is his only RSS patient.... And TEN months of not gaining any

> weight? The gastro doctor said " I don't like periactin - it doesn't

work. "

> (Again, he doesn't have any other RSS patients). Then the gastro doctor

went

> on to recommend an experimental appetitite stimulant that has " been

working

> on AIDS adult patients and has just been tested on 40 pediatric patients

at

> Baylor " (again, though, no RSS kids).

>

> HELP!!!!! What the heck do we do when every doctor gives us a different

> story. is bone thin. I don't care if she is little as long as

she

> stays on her own curve. But her curve is non-existent!!! She is tired

all

> the time, and complains that she " wants more energy. " She eats literally

> every 15-30 minutes -- all high-calorie foods unless she wants grapes,

etc.

> She is eating about 1200-1400 calories a day as it is (120-135% of her

needed

> caloric intake). My gut instinct is that somehow we need to get another

200+

> calories into her a day. But during the daytime, I can't see how we are

> going to get any more food into her! So we thought a G-tube would be

better,

> just for a couple hours a night.

>

> But that means surgery!

>

> Can anyone with any experience provide any feedback?

>

> & Steve Salem

> Parents of (RSS) 1/13/96 and Tyler, 3/8/97

>

> ------------------------------------------------------------------------

> PERFORM CPR ON YOUR APR!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2121/0/_/229381/_/951997730/

> ------------------------------------------------------------------------

>

>

[Guest guest]

Hi Ja'Aryn mother,

My daughter has not been diagnosed with anything yet, but she too is about

the same age as your daughter and is 34 inches and 23 pounds. And sounds

similar to yours except that she is not yet on periactin.If you want to

compare notes e-mail me back. When she was young she did sweat quite a bit.

We never were able to figure it out. Now, her hair sweats a little more

than the rest of the family but I never thought anything about it until now.

Does anyone know if RSS children are children with RSS symptoms have thin

hair? Ours has baby fine hair and it does not grow very fast. She does not

have bald spots but you can see her scalp in places if hair is not parted

right. We have very thick hair in our family and can't figure out where she

gets it from?

Ann Rajan.

Re: Any feedback greatly appreciated!

>

>

>Hi, I have a RSS child who's almost 4 yrs. 32 inches tall and 20 pounds

she

>just started periactin again, she's never tired she has too much energy

even

>before the periactin but last night was the first time in over 1yr., that

>she has had periactin and Ja'Aryn (pronounced J-) ate a lot but she

>burns it off quickly. This morning she had a box of Cheerios in the bed,

>wow! Periactin must be working but she also drinks Boost, 360 cal. This

may

>sound strange but why do RSS kids perspire so much especially in their

>hair and on the nose my little girl sweats a lot in her head even when

she's

>asleep, does anyone know why, please reply if you all know

> Any feedback greatly appreciated!

>

>

>> From: JBSalem@...

>>

>> Hello -

>>

>> Some of you may have gotten our email posted to the Magic_list board

>(before

>> we knew about the RSS-Support board!), so ignore this if you did.

>>

>> We have a daughter, , who just turned 4 years old and who has been

>> diagnosed with a mild phenotype of -Silver Syndrome (both Yale

>> Children's & Cedar Sinai). We moved from CT to Manhattan Beach, CA a

year

>> ago.

>>

>> has done relatively well - began speech therapy for pronunciation

>> problems. Saw an orthopedist for her left leg assymetry but they said to

>> just watch and see. Her height is doing pretty well -- 37 " tall so 0-5th

>of

>> standard chart. But her weight has just been a struggle.

>>

>> We have learned that most RSS kids have little to no appetite, so

>is

>> actually abnormal. We have no problem getting her to eat - it's getting

>her

>> NOT to eat. She eats all day long, and always has. When she was 18

>months

>> old, she stopped gaining weight for 6 months. We increased her caloric

>> intake by 30% to 135% of normal by adding Pediasure...she began to gain

>> weight again.

>>

>> At 3yrs3 months, she stopped gaining weight again. She has not gained

any

>> weight for TEN months. 26 1/2 pounds at 4 years. But during this same

>> timeframe, she began preschool and several afterschool athletic

>activities -

>> so her calorie expenditure has increased. Her gastro doctor has ruled

out

>> any allergy or malabsorption.

>>

>> Periactin has been recommended to us by the Magic Foundation, but here

are

>> our concerns. 1) After 2 nights of just 25% dosage was zonked.

>But

>> we have since learned from some parents that this does go away after a

>while?

>> But 2) her pediatrician says - increase her appetite to what?

>Infinitism?

>> She doesn't have an appetite problem.

>>

>> Her pediatrician wants to, and has all along wanted to, put in a mic-key

>> button G-tube. The endocrin doctor says " all RSS kids don't gain weight "

>but

>> is his only RSS patient.... And TEN months of not gaining any

>> weight? The gastro doctor said " I don't like periactin - it doesn't

>work. "

>> (Again, he doesn't have any other RSS patients). Then the gastro doctor

>went

>> on to recommend an experimental appetitite stimulant that has " been

>working

>> on AIDS adult patients and has just been tested on 40 pediatric patients

>at

>> Baylor " (again, though, no RSS kids).

>>

>> HELP!!!!! What the heck do we do when every doctor gives us a different

>> story. is bone thin. I don't care if she is little as long as

>she

>> stays on her own curve. But her curve is non-existent!!! She is tired

>all

>> the time, and complains that she " wants more energy. " She eats literally

>> every 15-30 minutes -- all high-calorie foods unless she wants grapes,

>etc.

>> She is eating about 1200-1400 calories a day as it is (120-135% of her

>needed

>> caloric intake). My gut instinct is that somehow we need to get another

>200+

>> calories into her a day. But during the daytime, I can't see how we are

>> going to get any more food into her! So we thought a G-tube would be

>better,

>> just for a couple hours a night.

>>

>> But that means surgery!

>>

>> Can anyone with any experience provide any feedback?

>>

>> & Steve Salem

>> Parents of (RSS) 1/13/96 and Tyler, 3/8/97

>>

>> ------------------------------------------------------------------------

>> PERFORM CPR ON YOUR APR!

>> Get a NextCard Visa, in 30 seconds! Get rates as low as

>> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

>> Apply NOW!

>> http://click./1/2121/0/_/229381/_/951997730/

>> ------------------------------------------------------------------------

>>

>>

>

>

>------------------------------------------------------------------------

>MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

>Get a NextCard Visa, in 30 seconds! Get rates as low as

>0.0% Intro or 9.9% Fixed APR and no hidden fees.

>Apply NOW!

>http://click./1/2122/0/_/229381/_/952019757/

>------------------------------------------------------------------------

>

>

[Guest guest]

I just wanted to note that sometimes sweating is a sign of hypoglycemia.

Might not be the case here but wanted to mention it just in case.

Kathleen [Mom to Abby--16 mos, 13 lbs., 26 1/4 in.- Close but not RSS ]

Re: Any feedback greatly appreciated!

>

>

>>

>>

>>Hi, I have a RSS child who's almost 4 yrs. 32 inches tall and 20 pounds

>she

>>just started periactin again, she's never tired she has too much energy

>even

>>before the periactin but last night was the first time in over 1yr., that

>>she has had periactin and Ja'Aryn (pronounced J-) ate a lot but she

>>burns it off quickly. This morning she had a box of Cheerios in the bed,

>>wow! Periactin must be working but she also drinks Boost, 360 cal. This

>may

>>sound strange but why do RSS kids perspire so much especially in their

>>hair and on the nose my little girl sweats a lot in her head even when

>she's

>>asleep, does anyone know why, please reply if you all know

>> Any feedback greatly appreciated!

>>

>>

>>> From: JBSalem@...

>>>

>>> Hello -

>>>

>>> Some of you may have gotten our email posted to the Magic_list board

>>(before

>>> we knew about the RSS-Support board!), so ignore this if you did.

>>>

>>> We have a daughter, , who just turned 4 years old and who has

been

>>> diagnosed with a mild phenotype of -Silver Syndrome (both Yale

>>> Children's & Cedar Sinai). We moved from CT to Manhattan Beach, CA a

>year

>>> ago.

>>>

>>> has done relatively well - began speech therapy for

pronunciation

>>> problems. Saw an orthopedist for her left leg assymetry but they said

to

>>> just watch and see. Her height is doing pretty well -- 37 " tall so

0-5th

>>of

>>> standard chart. But her weight has just been a struggle.

>>>

>>> We have learned that most RSS kids have little to no appetite, so

>>is

>>> actually abnormal. We have no problem getting her to eat - it's getting

>>her

>>> NOT to eat. She eats all day long, and always has. When she was 18

>>months

>>> old, she stopped gaining weight for 6 months. We increased her caloric

>>> intake by 30% to 135% of normal by adding Pediasure...she began to gain

>>> weight again.

>>>

>>> At 3yrs3 months, she stopped gaining weight again. She has not gained

>any

>>> weight for TEN months. 26 1/2 pounds at 4 years. But during this same

>>> timeframe, she began preschool and several afterschool athletic

>>activities -

>>> so her calorie expenditure has increased. Her gastro doctor has ruled

>out

>>> any allergy or malabsorption.

>>>

>>> Periactin has been recommended to us by the Magic Foundation, but here

>are

>>> our concerns. 1) After 2 nights of just 25% dosage was zonked.

>>But

>>> we have since learned from some parents that this does go away after a

>>while?

>>> But 2) her pediatrician says - increase her appetite to what?

>>Infinitism?

>>> She doesn't have an appetite problem.

>>>

>>> Her pediatrician wants to, and has all along wanted to, put in a mic-key

>>> button G-tube. The endocrin doctor says " all RSS kids don't gain

weight "

>>but

>>> is his only RSS patient.... And TEN months of not gaining any

>>> weight? The gastro doctor said " I don't like periactin - it doesn't

>>work. "

>>> (Again, he doesn't have any other RSS patients). Then the gastro doctor

>>went

>>> on to recommend an experimental appetitite stimulant that has " been

>>working

>>> on AIDS adult patients and has just been tested on 40 pediatric patients

>>at

>>> Baylor " (again, though, no RSS kids).

>>>

>>> HELP!!!!! What the heck do we do when every doctor gives us a different

>>> story. is bone thin. I don't care if she is little as long as

>>she

>>> stays on her own curve. But her curve is non-existent!!! She is tired

>>all

>>> the time, and complains that she " wants more energy. " She eats

literally

>>> every 15-30 minutes -- all high-calorie foods unless she wants grapes,

>>etc.

>>> She is eating about 1200-1400 calories a day as it is (120-135% of her

>>needed

>>> caloric intake). My gut instinct is that somehow we need to get another

>>200+

>>> calories into her a day. But during the daytime, I can't see how we are

>>> going to get any more food into her! So we thought a G-tube would be

>>better,

>>> just for a couple hours a night.

>>>

>>> But that means surgery!

>>>

>>> Can anyone with any experience provide any feedback?

>>>

>>> & Steve Salem

>>> Parents of (RSS) 1/13/96 and Tyler, 3/8/97

>>>

>>> ------------------------------------------------------------------------

>>> PERFORM CPR ON YOUR APR!

>>> Get a NextCard Visa, in 30 seconds! Get rates as low as

>>> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

>>> Apply NOW!

>>> http://click./1/2121/0/_/229381/_/951997730/

>>> ------------------------------------------------------------------------

>>>

>>>

>>

>>

>>------------------------------------------------------------------------

>>MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

>>Get a NextCard Visa, in 30 seconds! Get rates as low as

>>0.0% Intro or 9.9% Fixed APR and no hidden fees.

>>Apply NOW!

>>http://click./1/2122/0/_/229381/_/952019757/

>>------------------------------------------------------------------------

>>

>>

>

>

>------------------------------------------------------------------------

>MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

>Get a NextCard Visa, in 30 seconds! Get rates as low as

>0.0% Intro or 9.9% Fixed APR and no hidden fees.

>Apply NOW!

>http://click./1/2122/0/_/229381/_/952032147/

>------------------------------------------------------------------------

>

>

>

[Guest guest]

Hi Jackie -

I met a little girl at my daughter's speech therapist's office who is African

American and has severe RSS. (They live in Palos Verdes, CA). Can you email

me your phone number and full name. I will give it to the speech therapist

(they won't give me names).

Our daughter also eats every 15-30 minutes (26 pounds at 37 inches tall) and

also hasn't gained weight in a year. What we have learned (and Dr. Harbison

reiterated this on the phone) is that NOT gaining any weight is NOT normal

for RSS, and is probably instead either not getting enough calories,

malabsorption, allergy or thyroid issues (possibly metabolic, too). Has your

daughter been tested for malabsorption, allergy or thyroid issues?

is starting Periactin again, and then we also will probably be using a

mic-key (?) tube. Anyways. let me know if you want me to try and connect

you!

Good luck!

[Guest guest]

JACKIE QUINONES

225/356-8360 HOME

2664 IROQUOIS STREET

BATON ROUGE LOUISIANA 70805

MS.JA-QUE@... MY EMAIL ADDRESS

Re: Any feedback greatly appreciated!

> From: JBSalem@...

>

> Hi Jackie -

>

> I met a little girl at my daughter's speech therapist's office who is

African

> American and has severe RSS. (They live in Palos Verdes, CA). Can you

email

> me your phone number and full name. I will give it to the speech

therapist

> (they won't give me names).

>

> Our daughter also eats every 15-30 minutes (26 pounds at 37 inches tall)

and

> also hasn't gained weight in a year. What we have learned (and Dr.

Harbison

> reiterated this on the phone) is that NOT gaining any weight is NOT normal

> for RSS, and is probably instead either not getting enough calories,

> malabsorption, allergy or thyroid issues (possibly metabolic, too). Has

your

> daughter been tested for malabsorption, allergy or thyroid issues?

> is starting Periactin again, and then we also will probably be using a

> mic-key (?) tube. Anyways. let me know if you want me to try and connect

> you!

>

> Good luck!

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/937/0/_/229381/_/952122699/

> ------------------------------------------------------------------------

>

>