(No subject)

[Guest guest]

Hi everyone,

My son was 9 years and 11 months and was 43.1 inches and 38.8 lb. At age

10 years 7 months he was 44 inches and 39.7 lb. If you notice the growth

charts are in Kg and Centimeters. If you need a place on the web to do the

conversions I have the web address.

My son started GH therapy in Jan. he goes back in to the doctor's this

month and we will see if he has made a change yet. I have my fingers crossed.

I also have a 13 year old daughter with RSS she has not take n the

growth hormones. She is soon to stop her growth and it is too late to start

this on her because she had precious puberty at age 10. She went to the

doctor in May 98 and was 4ft 6 in and 83 lb. She went back in Nov. 98 and was

again 4ft 6 and 83 lb. So I assume that she is going to be 4 foot 6. The

doctors back in 94 predicted a height of 4 foot 7. They were very close. They

have predicted not even 4 foot for my son. That is a hard one to deal with.

We are looking in to lupron to stop his puberty and give him more growing

time. We do not know if this will help put we are going to try.

Both of my children do well in school and are A B students. I do have to

have the school help with teasing a lot. Sometimes it is the grownups who are

the worst. My husband is military and we have changed schools a lot so I have

found ways of dealing with the school before they start it is a visit with

the principal then the teachers. So far they have a positive outlook on the

future and my son is thinking of stopping the GH and waiting to try the

lupron later. He says so what if I am short it is no big deal I am not

worried. He is very up beat about life and says there is a lot worse thing to

have then being short. He knows crippled children and has friends with cancer

that are dying. In his own words he feels that life is what he makes it not

what other people try to make for him. He has a lot of goals and I hope he

keeps them.

My daughter who is 13 also has a great outlook on life she even has a job

for the newspaper selling subscriptions does well too makes atleast 200 a

month for 24 hours work for the month. She is in the choir, even plays on

the basketball team (never would have thought that), constantly finding

something to do, plans on being a cheerleader, and a writer. She has written

numerous short stories. So far she wants to be a writer when she grows up.

She has many friends and I never see or hear of her getting picked on. If she

does she will go find a grownup and make it stop. She has too many so called

boyfriends which right now is a major no no is my house. Never been on a date

not yet 30 would be the right age if left up to me. But atleast I know that

she is well adjusted and so far no social problems. I never treated them

different and have always pushed them or stood to the side and just watched

and if they fell I waited to see if they needed me I never ran to them first.

I hope that they remain strong because we all know too well that this is a

cruel world we live in.

OK I best stop I have started my own short story here. Now you see where my

daughter gets it from LOL.

Take care everyone and if you ever need to just talk let me know,

Minschluv@...

[Guest guest]

,

I'd love to meet your family - what an inspiration!!!

Inga

At 01:39 PM 4/21/99 -0400, you wrote:

>From: Minis68463@...

>

>

> Hi everyone,

>

> My son was 9 years and 11 months and was 43.1 inches and 38.8 lb. At

age

>10 years 7 months he was 44 inches and 39.7 lb. If you notice the growth

>charts are in Kg and Centimeters. If you need a place on the web to do the

>conversions I have the web address.

> My son started GH therapy in Jan. he goes back in to the doctor's this

>month and we will see if he has made a change yet. I have my fingers crossed.

> I also have a 13 year old daughter with RSS she has not take n the

>growth hormones. She is soon to stop her growth and it is too late to start

>this on her because she had precious puberty at age 10. She went to the

>doctor in May 98 and was 4ft 6 in and 83 lb. She went back in Nov. 98 and

was

>again 4ft 6 and 83 lb. So I assume that she is going to be 4 foot 6. The

>doctors back in 94 predicted a height of 4 foot 7. They were very close.

They

>have predicted not even 4 foot for my son. That is a hard one to deal with.

> We are looking in to lupron to stop his puberty and give him more

growing

>time. We do not know if this will help put we are going to try.

> Both of my children do well in school and are A B students. I do have to

>have the school help with teasing a lot. Sometimes it is the grownups who

are

>the worst. My husband is military and we have changed schools a lot so I

have

>found ways of dealing with the school before they start it is a visit with

>the principal then the teachers. So far they have a positive outlook on the

>future and my son is thinking of stopping the GH and waiting to try the

>lupron later. He says so what if I am short it is no big deal I am not

>worried. He is very up beat about life and says there is a lot worse thing

to

>have then being short. He knows crippled children and has friends with

cancer

>that are dying. In his own words he feels that life is what he makes it not

>what other people try to make for him. He has a lot of goals and I hope he

>keeps them.

> My daughter who is 13 also has a great outlook on life she even has a job

>for the newspaper selling subscriptions does well too makes atleast 200 a

>month for 24 hours work for the month. She is in the choir, even plays on

>the basketball team (never would have thought that), constantly finding

>something to do, plans on being a cheerleader, and a writer. She has written

>numerous short stories. So far she wants to be a writer when she grows up.

>She has many friends and I never see or hear of her getting picked on. If

she

>does she will go find a grownup and make it stop. She has too many so called

>boyfriends which right now is a major no no is my house. Never been on a

date

>not yet 30 would be the right age if left up to me. But atleast I know that

>she is well adjusted and so far no social problems. I never treated them

>different and have always pushed them or stood to the side and just watched

>and if they fell I waited to see if they needed me I never ran to them

first.

>I hope that they remain strong because we all know too well that this is a

>cruel world we live in.

> OK I best stop I have started my own short story here. Now you see where my

>daughter gets it from LOL.

> Take care everyone and if you ever need to just talk let me know,

>

> Minschluv@...

>

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

>Show mom you love her. Check out our great Mother's Day Gifts!

>14K Gold and gemstone jewelry, leather and cloth wallets and purses,

>gardening, gourmet, kitchen, more! Free Shipping in the US!

> http://www.onelist.com/ad/shoptheglobe5

>

[Guest guest]

Hi ,

Your kids sound so well-adjusted and wonderful. You and your husband

certainly have raised them to be independent, creative, and self-confident,

which is what we are hoping for our kids. And your daughter plays

basketball! That's awesome! I'd love to hear more about your kids and how

they are doing.

Thanks for joining the list!

Dennise

Re: (no subject)

>From: Minis68463@...

>

>

> Hi everyone,

>

> My son was 9 years and 11 months and was 43.1 inches and 38.8 lb. At

age

>10 years 7 months he was 44 inches and 39.7 lb. If you notice the growth

>charts are in Kg and Centimeters. If you need a place on the web to do the

>conversions I have the web address.

> My son started GH therapy in Jan. he goes back in to the doctor's this

>month and we will see if he has made a change yet. I have my fingers

crossed.

> I also have a 13 year old daughter with RSS she has not take n the

>growth hormones. She is soon to stop her growth and it is too late to start

>this on her because she had precious puberty at age 10. She went to the

>doctor in May 98 and was 4ft 6 in and 83 lb. She went back in Nov. 98 and

was

>again 4ft 6 and 83 lb. So I assume that she is going to be 4 foot 6. The

>doctors back in 94 predicted a height of 4 foot 7. They were very close.

They

>have predicted not even 4 foot for my son. That is a hard one to deal with.

> We are looking in to lupron to stop his puberty and give him more

growing

>time. We do not know if this will help put we are going to try.

> Both of my children do well in school and are A B students. I do have

to

>have the school help with teasing a lot. Sometimes it is the grownups who

are

>the worst. My husband is military and we have changed schools a lot so I

have

>found ways of dealing with the school before they start it is a visit with

>the principal then the teachers. So far they have a positive outlook on the

>future and my son is thinking of stopping the GH and waiting to try the

>lupron later. He says so what if I am short it is no big deal I am not

>worried. He is very up beat about life and says there is a lot worse thing

to

>have then being short. He knows crippled children and has friends with

cancer

>that are dying. In his own words he feels that life is what he makes it not

>what other people try to make for him. He has a lot of goals and I hope he

>keeps them.

> My daughter who is 13 also has a great outlook on life she even has a job

>for the newspaper selling subscriptions does well too makes atleast 200 a

>month for 24 hours work for the month. She is in the choir, even plays on

>the basketball team (never would have thought that), constantly finding

>something to do, plans on being a cheerleader, and a writer. She has

written

>numerous short stories. So far she wants to be a writer when she grows up.

>She has many friends and I never see or hear of her getting picked on. If

she

>does she will go find a grownup and make it stop. She has too many so

called

>boyfriends which right now is a major no no is my house. Never been on a

date

>not yet 30 would be the right age if left up to me. But atleast I know that

>she is well adjusted and so far no social problems. I never treated them

>different and have always pushed them or stood to the side and just watched

>and if they fell I waited to see if they needed me I never ran to them

first.

>I hope that they remain strong because we all know too well that this is a

>cruel world we live in.

> OK I best stop I have started my own short story here. Now you see where

my

>daughter gets it from LOL.

> Take care everyone and if you ever need to just talk let me know,

>

> Minschluv@...

>

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

>Show mom you love her. Check out our great Mother's Day Gifts!

>14K Gold and gemstone jewelry, leather and cloth wallets and purses,

>gardening, gourmet, kitchen, more! Free Shipping in the US!

> http://www.onelist.com/ad/shoptheglobe5

[Guest guest]

,

Thank you for your story. Your kids sound great! It is very inspirational!

I signed up with this support group because I am very interested in RSS. At

my last ped endo visit I questioned her about this diagnosis for my son. I

have learned a lot about this with the HGF support group and noticed a couple

of similarities. My son has a leg length descrepancy (asymetry), very small

mouth, and his growth seems similar to what others have described that have

RSS, although his weight has always been proportionate. He is currently on

GH and very slowly catching up. I'm hoping to continue to learning from this

group as well as the HGF group.

Thanks again for your wonderful story!

ette

[Guest guest]

In a message dated 05/10/1999 11:34:42 PM !!!First Boot!!!,

JNeigh1409@... writes:

> Studies

> have found typical rosacea sufferers to be anxious and vulnerable to

> feelings

> of insecurity and inferiority, sensitive to criticism, easily discouraged,

> shy, and socially ill at ease.

Just what we need -- another stereotype. Personally, I wasn't anxious until

I was diagnosed with rosacea. I don't feel socially ill at ease unless I

think my face is red or (horrors) bumpy. Also, not being able to drink

socially doesn't really help one loosen up, does it?

Diane

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

[Guest guest]

In a message dated 10/5/99 11:34:39 pm, you wrote:

<<Studies

have found typical rosacea sufferers to be anxious and vulnerable to feelings

of insecurity and inferiority, sensitive to criticism, easily discouraged,

shy, and socially ill at ease. Guilt and shame are commonly described by

these patients. They seem unusually dependent on the good opinion of others.>>

Could have been written about me!

Harriet

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

[Guest guest]

In a message dated 5/11/99 5:48:03 AM Pacific Daylight Time,

museum@... writes:

<<

>Could have been written about me!

>Harriet

>

Yeah, about me too.

Igor

>>

http://buck.dogpile.com/texis/search?q=rosacea & fs=web & to=thirty

This is the address if you are interested in reading the article, personally

had never connected my shyness to rosacea until I read this.

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

[Guest guest]

><<Studies

>have found typical rosacea sufferers to be anxious and vulnerable to

feelings

>of insecurity and inferiority, sensitive to criticism, easily discouraged,

>shy, and socially ill at ease. Guilt and shame are commonly described by

>these patients. They seem unusually dependent on the good opinion of

others.>>

>

>Could have been written about me!

>Harriet

>

Yeah, about me too.

Igor

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

[Guest guest]

Me too! Especially when I have a flare or major breakouts. Matija

wrote:

Original Article: /list/rosacea-support/?start=4212

> << Studies have found typical rosacea sufferers to be

> anxious and vulnerable to feelings of insecurity and

> inferiority, sensitive to criticism, easily

> discouraged, shy, and socially ill at ease. Guilt and

> shame are commonly described by these patients. They

> seem unusually dependent on the good opinion of

> others. >>

>

> [[ Could have been written about me! ]]

>

> Count me in also...sounds like me.

>

> Pat

> _________________________________________________________

>

[Guest guest]

Hi everyone! This is my first time on the RSS support group. My son 's name

is . He is 17 months old and weighs 11 lbs. 10 oz. He doesn't have a

feeding tube yet. He eats all day long but only small amounts. He also drinks

Pediasure ( about 12 oz. a day ). I have an appointment with Dr. Harbison a

pediatric endocrinologist at the end of July. We'll take it from there.

Around

my area noone heard of RSS.

This may seem like a silly question but I was wondering what those of you

with older children under 20 lbs. did as far as a car seat ? My son hates

riding

in the car . Is there anything made for smaller children so they can sit

forward?

Looking foward to hearing from you!

MICHELLE from PA

[Guest guest]

Hi ,

Good luck with Dr. Harbison. She is a very good doctor but can be a little

abrasive.

As for the car seat, our pediatrician said as long as our son could hold

himself erect (sitting or standing) then we could turn him around even

though he was under 20 pounds. He was a much happier camper then.

Hope this helps

Ken M

----------

>From: Al72569@...

>To: RSS-Supportonelist

>Subject: Re: (no subject)

>Date: Thu, Jul 1, 1999, 10:23 PM

>

> From: Al72569@...

>

> Hi everyone! This is my first time on the RSS support group. My son 's name

> is . He is 17 months old and weighs 11 lbs. 10 oz. He doesn't have a

> feeding tube yet. He eats all day long but only small amounts. He also drinks

> Pediasure ( about 12 oz. a day ). I have an appointment with Dr. Harbison a

> pediatric endocrinologist at the end of July. We'll take it from there.

> Around

> my area noone heard of RSS.

> This may seem like a silly question but I was wondering what those of you

> with older children under 20 lbs. did as far as a car seat ? My son hates

> riding

> in the car . Is there anything made for smaller children so they can sit

> forward?

> Looking foward to hearing from you!

>

> MICHELLE from PA

>

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

[Guest guest]

Hi,

I know that you wrote from PA, and that your son hates riding in the

car seat - I believe safety is very important. Maybe you could find

out the law in your state as far as how big, etc. he needs to be to

ride forward - age may mean something, too, not just size. For

example, the law in NJ is 40 lbs or 4 yrs of age to get out of a car

seat. Well, hello, but the child will be 10 and still in one? I

talked to the safety division of my town's police dept. The officer I

spoke with told me that one of those nice new booster seats would work

well for my son, 25 lbs. and 4 yrs, 4 mos. I think when I got it he

was only 22 lbs. He loves his new seat and I took him with me to pick

it out. It was about $80 but it is so worth it. It's a Century

Breverra and comes with a harness for 30-40 lbs. and 35 " min. He's was

so close (height) that we went for this one. The psychological state

is so very important, as well - Jake can't feel like he's being treated

like a baby.

From Debbi

______________________________

--- Al72569@... wrote:

> From: Al72569@...

>

> Hi everyone! This is my first time on the RSS

> support group. My son 's name

> is . He is 17 months old and weighs 11 lbs. 10

> oz. He doesn't have a

> feeding tube yet. He eats all day long but only

> small amounts. He also drinks

> Pediasure ( about 12 oz. a day ). I have an

> appointment with Dr. Harbison a

> pediatric endocrinologist at the end of July. We'll

> take it from there.

> Around

> my area noone heard of RSS.

> This may seem like a silly question but I was

> wondering what those of you

> with older children under 20 lbs. did as far as a

> car seat ? My son hates

> riding

> in the car . Is there anything made for smaller

> children so they can sit

> forward?

> Looking foward to hearing from you!

>

>

> MICHELLE from PA

>

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

[Guest guest]

:

My son, isn't 20 lbs. yet and has been riding in a forward facing carseat for

over a year now. We have a carseat that I feel is PERFECT for RSS kids. It's a

Kolecraft I think. It's tan/blue and has these inserts that make it more

fitting

in the seat and he doesn't look like he can " swim " around in it. It really fits

him well.

Anyway, the most important thing is to ask your pediatrician for his/her opinion

as far as your son being able to support his own head if he had to. Then have

him/her write a note stating his condition and that he/she feels your son is

capable supporting his head in a collision. Then keep the doctors note in your

glove compartment. Then if for some reason you are pulled over and the officer

notices your son and questions his age and size, you can give him the note of

explanation. This was all recommended to me and we haven't had any problems

(not

that I've been pulled over on a regular basis! ha. ha.).

If were to still be in an infant carrier, he would be beside himself!!!!

He

LOVES facing forward and is definately safe in it. Safety first!!!!

Take care from Calif.

Stacie

Mommy to daughter, - 6 yrs. and son, 2 1/2 yrs. with RSS, Assemytry,

& g-tube (19 1/2 lbs. & 30 1/4 in. tall)

Al72569@... wrote:

> From: Al72569@...

>

> Hi everyone! This is my first time on the RSS support group. My son 's name

> is . He is 17 months old and weighs 11 lbs. 10 oz. He doesn't have a

> feeding tube yet. He eats all day long but only small amounts. He also drinks

> Pediasure ( about 12 oz. a day ). I have an appointment with Dr. Harbison a

> pediatric endocrinologist at the end of July. We'll take it from there.

> Around

> my area noone heard of RSS.

> This may seem like a silly question but I was wondering what those of you

> with older children under 20 lbs. did as far as a car seat ? My son hates

> riding

> in the car . Is there anything made for smaller children so they can sit

> forward?

> Looking foward to hearing from you!

>

> MICHELLE from PA

>

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

[Guest guest]

Our son is very much that way - gets 120 kcal/kg/day but is still 14.7

pounds at around 32 " and 4 yrs old. We did blood tests for celiac disease,

which causes malabsorption. It is possible a selective IgA deficiency

skewed the results, which is a common occurence in celiacs. It looks like

we may be getting his IgA tested, as well as his red cell parameters and

doing a D-xylose test, which assesses the absorptive capacity of the small

intestine.

Have you looked at the growth chart for RSS? It seems to follow the 5th

percentile for weight/height ratio VERY closely. Our son dropped off of

this curve at around 1 yr old, which is when: he started eating grains

(which can cause celiac reactions), he started walking (burning calories),

and we concentrated his food to the daytime feeds (same number of calories,

but dropped the night tube feedings so intestines had to process more per

daytime feed).

Inga

At 04:01 PM 7/1/99 -0700, debbi schaffer wrote:

>

>

>>From Debbi-I have a new email address (I dropped AOL):

>debsch65@....

>

>To Jodi-I tried to email you privately-it didn't go through. I copied

>you on a msg to katy-maybe we all can meet mid-way some Saturday (and

>any other NJ RSS families, too). Is Dr. Harbison local? A Geneticist?

>How do so many know him?

>

>To all-I have read a lot so far about the kids with g-tubes and

>periactin. I think I've figured out that they're necessary because

>it's very hard to get them to eat during the day and to increase the

>caloric intake-? Were these measures suggested by the G.I. or the

>pediatrician? I have started really getting nervous that we haven't

>been doing enough (I mentioned this once before). We did see a G.I.

>just this past October and provided him with a 3-day dietary intake.

>His office indicated that it was sufficient-but I still think sometimes

>I should be giving more calories. Does anyone, however, have the

>situation where your child DOES eat a lot, like continuously, all day

>(little bits, though), but still doesn't gain any weight? Please let

>me know. Thanks.

>

>Debbi, mom to Jake, 4 yrs, 4 mos, 25 lbs., 35 3/4 "

>

>

>

>_________________________________________________________

>

[Guest guest]

Our son is very much that way - gets 120 kcal/kg/day but is still 14.7

pounds at around 32 " and 4 yrs old. We did blood tests for celiac disease,

which causes malabsorption. It is possible a selective IgA deficiency

skewed the results, which is a common occurence in celiacs. It looks like

we may be getting his IgA tested, as well as his red cell parameters and

doing a D-xylose test, which assesses the absorptive capacity of the small

intestine.

Have you looked at the growth chart for RSS? It seems to follow the 5th

percentile for weight/height ratio VERY closely. Our son dropped off of

this curve at around 1 yr old, which is when: he started eating grains

(which can cause celiac reactions), he started walking (burning calories),

and we concentrated his food to the daytime feeds (same number of calories,

but dropped the night tube feedings so intestines had to process more per

daytime feed).

Inga

At 04:01 PM 7/1/99 -0700, debbi schaffer wrote:

>

>

>>From Debbi-I have a new email address (I dropped AOL):

>debsch65@....

>

>To Jodi-I tried to email you privately-it didn't go through. I copied

>you on a msg to katy-maybe we all can meet mid-way some Saturday (and

>any other NJ RSS families, too). Is Dr. Harbison local? A Geneticist?

>How do so many know him?

>

>To all-I have read a lot so far about the kids with g-tubes and

>periactin. I think I've figured out that they're necessary because

>it's very hard to get them to eat during the day and to increase the

>caloric intake-? Were these measures suggested by the G.I. or the

>pediatrician? I have started really getting nervous that we haven't

>been doing enough (I mentioned this once before). We did see a G.I.

>just this past October and provided him with a 3-day dietary intake.

>His office indicated that it was sufficient-but I still think sometimes

>I should be giving more calories. Does anyone, however, have the

>situation where your child DOES eat a lot, like continuously, all day

>(little bits, though), but still doesn't gain any weight? Please let

>me know. Thanks.

>

>Debbi, mom to Jake, 4 yrs, 4 mos, 25 lbs., 35 3/4 "

>

>

>

>_________________________________________________________

>

[Guest guest]

To Inga: thanks, I think it's time to schedule a dr. appt. (sore throat

or something-we're only allowed one well-visit/yr.) I should have him

weighed, etc. and see where he's at in his records, I'll check if/when

the GI recommended a follow-up. As far as the RSS growth chart, I know

there is such a thing, but I don't have one. I think my dr. can order

them from Magic, right? I'll request that he do that.

To all: I also, a few months back had written to Oprah re: RSS but

have received no response.

> >

> >

> >>From Debbi-I have a new email address (I dropped

> AOL):

> >debsch65@....

> >

> >To Jodi-I tried to email you privately-it didn't go

> through. I copied

> >you on a msg to katy-maybe we all can meet mid-way

> some Saturday (and

> >any other NJ RSS families, too). Is Dr. Harbison

> local? A Geneticist?

> >How do so many know him?

> >

> >To all-I have read a lot so far about the kids with

> g-tubes and

> >periactin. I think I've figured out that they're

> necessary because

> >it's very hard to get them to eat during the day

> and to increase the

> >caloric intake-? Were these measures suggested by

> the G.I. or the

> >pediatrician? I have started really getting

> nervous that we haven't

> >been doing enough (I mentioned this once before).

> We did see a G.I.

> >just this past October and provided him with a

> 3-day dietary intake.

> >His office indicated that it was sufficient-but I

> still think sometimes

> >I should be giving more calories. Does anyone,

> however, have the

> >situation where your child DOES eat a lot, like

> continuously, all day

> >(little bits, though), but still doesn't gain any

> weight? Please let

> >me know. Thanks.

> >

> >Debbi, mom to Jake, 4 yrs, 4 mos, 25 lbs., 35 3/4 "

>

> >

> >

> >

> >_________________________________________________________

> >

[Guest guest]

hey michelle , its jim again. I read your e-mail from the rss group. It

looks like you got in and got lots of mail!!! You mentioned g-tubes. You

know allie has a g-tube and we were afraid at first to let them do the

procedure, but we have to say that we love it now because we can rest

assured knowing that whatever she does not eat we can still give her the

proper nutrition needed. Have the dr's ever thought to put one in? As far

as car seats, allie uses a century infant car seat. She seems to like it

better than some others because it is smaller and she fits into it better.

We also have a stroller that is just a frame and the infant carrier snaps

into it- best thing we have!!!! Also , allie did not like car rides but

has gotten better with the car seat and we also have found that she likes

us to keep the window cracked open so she gets air- here in florida it

gets hot!! Another thing that we do when together is one of us to sit back

there with her and all her TOYS!!!!(THERE EVERYWHERE)HAHAHAHA

hope this might help- jim florida

----------

> From: Al72569@...

> To: RSS-Supportonelist

> Subject: Re: (no subject)

> Date: Thursday, July 01, 1999 10:23 PM

>

> From: Al72569@...

>

> Hi everyone! This is my first time on the RSS support group. My son 's

name

> is . He is 17 months old and weighs 11 lbs. 10 oz. He doesn't have

a

> feeding tube yet. He eats all day long but only small amounts. He also

drinks

> Pediasure ( about 12 oz. a day ). I have an appointment with Dr. Harbison

a

> pediatric endocrinologist at the end of July. We'll take it from there.

> Around

> my area noone heard of RSS.

> This may seem like a silly question but I was wondering what those of

you

> with older children under 20 lbs. did as far as a car seat ? My son

hates

> riding

> in the car . Is there anything made for smaller children so they can sit

> forward?

> Looking foward to hearing from you!

>

> MICHELLE from PA

>

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

[Guest guest]

WELCOME DEBBI!!!! We are happy you are joining the RSS group.

Stacie

Mommy to daughter - (6 yrs.) and son - (2 1/2 yrs.) with RSS,

assemetry, g-tube. Is 19 1/2 lbs. and 30 1/4 in. tall.

debbi schaffer wrote:

>

>

> subscribe

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

[Guest guest]

Stacie, thanks for welcoming me. I've actually been

on for a short time, now. I had trouble with my

computer yest. and my only choice was to shut it down

(it was in windows - yikes!!) there weren't any

errors, thank goodness, but, my e-mail on yahoo seems

slower and I hadn't gotten any new RSS msgs (and you

know, we get alot). so, I re-subscribed thinking

some-thing had gone wrong with that. Whatever, I

guess I even re-subscribed wrong. This thing can be

almost as frustrating as it's been getting an RSS

diagnosis! Anyway, I haven't said much lately on the

list, but (b4 yest), I've been reading them. I'm

kinda waiting until our Sept 9th appt with Dr.

Harbison. I've been getting all the records together,

etc. Good luck to all.

Debbi, Mom to Jake (we're in NJ) 25 lbs, 35 3/4 "

______________________________________

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

--- tclfam@... wrote:

> From: tclfam@...

>

> WELCOME DEBBI!!!! We are happy you are joining the

> RSS group.

>

> Stacie

> Mommy to daughter - (6 yrs.) and son -

> (2 1/2 yrs.) with RSS,

> assemetry, g-tube. Is 19 1/2 lbs. and 30 1/4 in.

> tall.

>

>

> debbi schaffer wrote:

>

> >

> >

> > subscribe

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

[Guest guest]

In a message dated 8/11/99 2:55:18 AM Central Daylight Time, Idigflower

writes:

<< I found this, thought you all would like to see it.

<A HREF= " http://www.mall-net.com/arth/arth1.html " >Arthritis and Rheumatism

Alternatives</A>

http://www.mall-net.com/arth/arth1.html >>

[Guest guest]

Hi Debbie,

Fetal Anticonvulsant syndrome is from my taking phenobarb during my

pregnancy, I have epilepsy. It according to the geneticist causes similar

traits.

As for the Reglan, a lot of the Drs. disagree with the warning, but I felt

better taking him off. But also let me add he never had any problems while on

it, I just felt better taking him off. It causes neurological problems, and

with my family history of epilepsy I that it best. But if he were having

problems with it you would have noticed. You can read the info and the

warning on the web page. motility.org

I don't think Micah has anything like the other syndromes you mentioned. He's

never had a respiratory infection. And only 1 ear infection for that matter.

He's a healthy happy kid except for his not eating. Thanks again for

helping. I guess Ill continue looking, not sure I could stop. I drove my

teachers crazy in high school I always had to know the why.... I drive

Micah's Drs. crazy too.

[Guest guest]

Hi Inga,

I have JME, juvenile myaclonic(?) epilepsy. It is very similar to touretts.

Micah is already exhibiting symptoms, tremors of his head like mine, the

neurologist thinks, but cant be sure that he may develop JME. He is highly

suspicious. JME usually wont show on an EEG until the teen years. Micah's EEG

was normal. Mine started at 11. Given this history we thought it wasn't worth

the risk. Ive tried to access motility.org several times today, their site

must be down, as I could not get in. They have a lot of info. on the motility

drugs. Propulsid was the safest I believe. I didn't realize Periactin could

also cause neurological problems. Do you have any reading on it? I have been

pushing the Dr. for it, perhaps I need to do some reading first.

I don't know of any test Drs. can do to predict possible problems, a thorough

history, especially if there is a family history of neuro. problems is

essential. Possibly an EEG, I know they recommend children on Propulsid have

an EKG before starting the med. because it can be fatal in children with

undisclosed heart problems. I know you cant mix it with arithromiasine(?).

They also recommend repeating the test yearly. I believe all that info is on

the web site I mentioned above. I don't know why I haven't been able to

access it today. I will keep trying.

[Guest guest]

,

Sounds like we have a similar concern about possible treatments for our sons

- I had a teenage migraine-equivalent seizure disorder which wass supposed

to be maternally inherited, so I have been concerned about the possibility

of my son having a low seizure threshold. I have considered Periactin but

have held off for this reason - it's also one to cause neurological problems.

Do you know about Propulsid?

And do you know if it's possible for a neurologist to test how risky these

meds are for our children BEFORE they take them and possibly have problems?

I heard about things like zinc and vitamin B complex halping appetite form a

book called Perscription for Nutritional Healing (sold at Costco and

Kaiser). The Floradix Iron plus herbs they recommended didn't sit well with

him, and I may have not tried the other things enough...

Inga

At 03:44 PM 8/11/99 EDT, CCFCRWMC@... wrote:

>From: CCFCRWMC@...

>

>Hi Debbie,

>Fetal Anticonvulsant syndrome is from my taking phenobarb during my

>pregnancy, I have epilepsy. It according to the geneticist causes similar

>traits.

>

>As for the Reglan, a lot of the Drs. disagree with the warning, but I felt

>better taking him off. But also let me add he never had any problems while on

>it, I just felt better taking him off. It causes neurological problems, and

>with my family history of epilepsy I that it best. But if he were having

>problems with it you would have noticed. You can read the info and the

>warning on the web page. motility.org

>

>I don't think Micah has anything like the other syndromes you mentioned. He's

>never had a respiratory infection. And only 1 ear infection for that matter.

>He's a healthy happy kid except for his not eating. Thanks again for

>helping. I guess Ill continue looking, not sure I could stop. I drove my

>teachers crazy in high school I always had to know the why.... I drive

>Micah's Drs. crazy too.

>

>

>

>

>

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

[Guest guest]

Interesting article P. I've often wondered about the " cure " being

hidden away, especially with cancer. Think of the money that would be lost.

Scary to even think about though.

Thanks,

>>>>>>>>>>>>>>>>>>>>

From: Idigflower@...

I found this, thought you all would like to see it.

<A HREF= " http://www.mall-net.com/arth/arth1.html " >Arthritis and Rheumatism

Alternatives</A>

[Guest guest]

,

I couldn't find my write-up on Periactin, but I just found an even better

web-page at:

http://www.ionet.net/~jcott/homepage/drugdb/039.html

As for Propusid, I found:

http://www.cnn.com/HEALTH/9806/30/heartburn.drug/

and

http://pharminfo.com/cgi-bin/print_hit_bold.pl/drugdb/dbgn_mnuc.html#cisapride

http://pharminfo.com/cgi-bin/print_hit_bold.pl/medwatch/mwrpt50.html

There are strong warnings coming out for this when there is a family history

of arrythmias (as you mentioned for undisclosed heart problems - something

we'll also have to watch).

Inga

At 06:01 PM 8/11/99 EDT, CCFCRWMC@... wrote:

>From: CCFCRWMC@...

>

>Hi Inga,

>I have JME, juvenile myaclonic(?) epilepsy. It is very similar to touretts.

>Micah is already exhibiting symptoms, tremors of his head like mine, the

>neurologist thinks, but cant be sure that he may develop JME. He is highly

>suspicious. JME usually wont show on an EEG until the teen years. Micah's EEG

>was normal. Mine started at 11. Given this history we thought it wasn't worth

>the risk. Ive tried to access motility.org several times today, their site

>must be down, as I could not get in. They have a lot of info. on the motility

>drugs. Propulsid was the safest I believe. I didn't realize Periactin could

>also cause neurological problems. Do you have any reading on it? I have been

>pushing the Dr. for it, perhaps I need to do some reading first.

>

>I don't know of any test Drs. can do to predict possible problems, a thorough

>history, especially if there is a family history of neuro. problems is

>essential. Possibly an EEG, I know they recommend children on Propulsid have

>an EKG before starting the med. because it can be fatal in children with

>undisclosed heart problems. I know you cant mix it with arithromiasine(?).

>They also recommend repeating the test yearly. I believe all that info is on

>the web site I mentioned above. I don't know why I haven't been able to

>access it today. I will keep trying.

>

>

>

>

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