New Member

[Guest guest]

Hi Sherry!

Im almost 9 months out and able to eat about 9 ounces at a meal....I can eat

an 8 oz steak, 3or 4 bites of potato and a couple bites of other veggie and

Im fine! I eat butter and olive oil alot and tolerate it well. Bacon too!

Just remember that eating 9 ounces at a meal is a whole lot different from

the 32 ounce stomach you have right now!

After surgery I wasnt very interested in eating but had a spoonful of

yogurt, applesauce, potatoes, refried beans with cheese etc

....soups...things like that. When I was 10 days out, I split a mcdonalds

cheeseburger with my hubby and we also had soft tacos from taco bell!

Remember, fast foods are good for us DSers but not good for the general

public!! We can both eat a half a whopper with cheese and about 5 bites of

fries and a few sips of a drink or water......a far cry from what we used to

eat and this will generally last us for about 5 hours!

Things to take to the hosptial, hmmmmm I took my own deodorant, shampoo,

conditioner, hair brush, blow dryer, slippers, a change of loose clothing to

wear home with slip on shoes so I wouldnt have to bend over but I passed on

nighties and a robe and used the hospital ones instead. Also a little clip

on fan as you will tend to be somewhat warm and it helps cool you down in

bed.

We all go into this with some fears like you have right now but they seem to

be unfounded as you will see once you get the surgery. Also, your tastes

will probably change! I used to love ice cream and no longer care for

it....its too rich tasting for me right now!

Glad you found us here!

Judie

New Member

> Hi, my name is Sherry and I am so glad I found this list. I am

> scheduled for a DS on August 23rd with Dr. Macura in Staten Island,

> NY. I haven't been able to talk with many DS'ers and have a few

> questions.

>

> With the DS, after about a year out of surgery, how much can one

> generally eat in regards to portion size. This is the only aspect of

> the surgery that still really worries me. I am afraid of being able

> to eat portions that are too large. Also, how are you all doing

> with your fat intake. I have read online that some can never

> tolerate so much as a french fry and others say they eat great and

> lose weight. I am not looking to eat poorly but don't want to never

> be able to consume fat either. Another question. What did you find

> very helpful after surgery such as food, things you brought to the

> hospital, etc? I look forward to getting to know you and learning

> from your experiences.

>

> Sincerely,

> Sherry

> GABS12992@...

>

>

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

>

[Guest guest]

Hi Sherry,

Welcome to the list I am glad you found it! I also had surgery with Dr. Macura.

I will be 2 months out when you have surgery so I cant really talk about

capacity a year out. I haven't been pushing the fat because of the increased

bm's it brings. Plus I feel I am still to early to introduce to much fat to soon

(just a personal opinion based on a personal feeling and nothing more). Early

post op I think the protein drinks are good because you wont want to eat and

nothing will taste good so the protein drinks take care of your protein

requirements. As far as portion size, I am interested in this answer also. Good

luck Sherry I think that Dr. Macura is great will Dr Nicastro or Dr. McMullen be

assisting Dr. Macura with your surgery?

Lisbeth

Dr. Macura

June 25, 2001

GABS12992@... wrote: Hi, my name is Sherry and I am so glad I found this

list. I am

scheduled for a DS on August 23rd with Dr. Macura in Staten Island,

NY. I haven't been able to talk with many DS'ers and have a few

questions.

With the DS, after about a year out of surgery, how much can one

generally eat in regards to portion size. This is the only aspect of

the surgery that still really worries me. I am afraid of being able

to eat portions that are too large. Also, how are you all doing

with your fat intake. I have read online that some can never

tolerate so much as a french fry and others say they eat great and

lose weight. I am not looking to eat poorly but don't want to never

be able to consume fat either. Another question. What did you find

very helpful after surgery such as food, things you brought to the

hospital, etc? I look forward to getting to know you and learning

from your experiences.

Sincerely,

Sherry

GABS12992@...

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

[Guest guest]

HI Sherry,

Welcome to the list and to your choice of Dr. Macura. He did my switch on April

28 of this year. At about 3 1/2 months I can eat depending on what it is about

8 oz.. I haven't done the " cottage cheese test " that some people here mentioned

yet. But, on an empty stomach, I can just about finish an 8 oz container of

yogurt. Denser foods are a bit less. I can eat about 1 1/2 quarter pound

hamburgers without the buns (sometimes one bun) with a bit of salad. As for

fatty foods, I don't worry about them. I haven't had any problem with fat, I

usually have 2 pieces of bacon and 2 eggs for breakfast.

You won't be eating " poorly " just less.

As for things helping in the hospital. I found I didn't need much there. A

pair of slip on slippers for walking is essential. I just used an extra gown as

a robe. You might want to bring some powder, money for the TV and phone (unless

you have someone who can get it turned on in the lobby for you), a phone card

if you have to make any long distance calls, that is all I can think of right

now. If you have sleep apnea, be sure to bring your cpap/bipap. Some people

bring a peri bottle and butt wipes, but I found I didn't use them in the

hospital, not to be gross, but I only had one little BM there and I got an

nursing aide to do the dirty job. I felt embarrassed, but she was so nice, kept

assuring me that this was part of her job.

If you live near and are going home, you might need a recliner to sleep in the

first week or so. Or, you can use something to prop your head up in bed, makes

it easier to get up. If you have to stay in the hospital's hotel let me know and

I'll give you some tips.

If you want to know any more, you can email me privately, rblack@... .

Good luck, I'll include you in my prayers.

Rita Black

Open DS, Dr. Macura 4/28/01

400 lbs

7/21/01 328 lbs.

[Guest guest]

Hi Marie-pia,

Does anyone else in your family have RP besides your children? Bless your heart, my heart just breaks for you. How were they diagnosed? But Rp is not a death sentence anymore lots of people only flare a small amount of time some people will go into a complete remission. So I am praying this will happen to your children. That is will just disappear. Do they have a good doctor there?

Just know you are in my thoughts and prayers.

Love, LU

i have 3 chidren with RP; The youngest is my daughter Coralie , she'i 14 as your. She was dx 6 years ago.Her brother is 11 now; He was dx 3 years ago. and my other son Nicolas is 18 now had the same symptoms since 2 years. They are all vegetrian but not vegetalian. We beleive it help for their flares. In summer(it actually summer in France) and specially in AUGUST THEY HAVE

[Guest guest]

Hi Marie-pia,

Does anyone else in your family have RP besides your children? Bless your heart, my heart just breaks for you. How were they diagnosed? But Rp is not a death sentence anymore lots of people only flare a small amount of time some people will go into a complete remission. So I am praying this will happen to your children. That is will just disappear. Do they have a good doctor there?

Just know you are in my thoughts and prayers.

Love, LU

i have 3 chidren with RP; The youngest is my daughter Coralie , she'i 14 as your. She was dx 6 years ago.Her brother is 11 now; He was dx 3 years ago. and my other son Nicolas is 18 now had the same symptoms since 2 years. They are all vegetrian but not vegetalian. We beleive it help for their flares. In summer(it actually summer in France) and specially in AUGUST THEY HAVE

[Guest guest]

Hi BJ...welcome to the group,... You have found a wonderful bunch of people

here. We are here for any input you may have to help us learn or for you to

ask any questions that we might have some answers for you.

Do you live by Lulu? Please let us know a little about yourself,..looking

forward to getting to know you better.

hugs

[Guest guest]

Hi BJ...welcome to the group,... You have found a wonderful bunch of people

here. We are here for any input you may have to help us learn or for you to

ask any questions that we might have some answers for you.

Do you live by Lulu? Please let us know a little about yourself,..looking

forward to getting to know you better.

hugs

[Guest guest]

Hi BJ,

Lulu here, been waiting to see a post from you and so glad to see your post tonight! You will find that this is a terrific group and you will love each and every one. It is a fact that RP deals a tough hand but this group sure makes you know that you are not alone and shares any info they get with the group. As you probably already know, no two cases are exactly alike, nor do the medications benefit each of us the same.

Just give us a call anytime and we will be glad to chat, answer any questions you might have. If I don't have an answer, then one of the other members of the group may.

Look forward to hearing from you again soon. Love and Prayers, Lucy (Lulu)

-- New member

Hi, My name is BJ ; Lulu gave me this addie and thought I should say hi... hope all is well and having happy holidays. I have been living with rp for about 5 yrs now, I have 2 teens that help me out when I get a bit slow, and I take care of a 65 yr mom. God keeps me going and I am very thankful for the time he has for me down here. Am glad to have found you all and to know that I am not nuts for the different things I have been going through. Take care BJ

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi BJ,

Lulu here, been waiting to see a post from you and so glad to see your post tonight! You will find that this is a terrific group and you will love each and every one. It is a fact that RP deals a tough hand but this group sure makes you know that you are not alone and shares any info they get with the group. As you probably already know, no two cases are exactly alike, nor do the medications benefit each of us the same.

Just give us a call anytime and we will be glad to chat, answer any questions you might have. If I don't have an answer, then one of the other members of the group may.

Look forward to hearing from you again soon. Love and Prayers, Lucy (Lulu)

-- New member

Hi, My name is BJ ; Lulu gave me this addie and thought I should say hi... hope all is well and having happy holidays. I have been living with rp for about 5 yrs now, I have 2 teens that help me out when I get a bit slow, and I take care of a 65 yr mom. God keeps me going and I am very thankful for the time he has for me down here. Am glad to have found you all and to know that I am not nuts for the different things I have been going through. Take care BJ

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi ,

Your case sounds so much like mine (including the bit about the iodine in

the vitamin -- I believe this triggered Graves' for me, and I WILL NEVER

TAKE IODINE IN A VITAMIN EVER AGAIN!).

What I would suggest is that you not get ANY radioactive scan, and

certainly not RAI, until you have thoroughly researched your treatment

options. I had the scan done before I knew anything, and though I don't

believe it resulted in any permanent damage, I feel it was unnecessary at

the very least. I would refuse it now. I would advise you to get an

ULTRASOUND of you thyroid to see if there are nodules. (I would also advise

you to get TSI and TPO antibodies tested, even though it may not be easy to

get your doctor to do it.) But from what I understand, the uptake scan is

only necessary in prep for RAI, and I will never choose that method (would

opt for surgery first).

There is so much to get into, I think I will simply advise you to join the

AtomicWomen Yahoo Group http://groups.yahoo.com/group/AtomicWomen/ (even

tho you're a guy!), and read my posts starting with #926, dated 6/16/03.

This may save everyone from having to repeat themselves ;-)

You also should go to Mediboard.com (Graves' Discussion), and read the

Thyroid Awareness 101 thread.

RAI is a permanent choice. Once done, you can't go back. It is fine for

some but 30% of people continue to struggle with symptoms. It is also

inadvisable if you have any eye symptoms, as there is documented evidence

that RAI can worsen Graves Ophthalmology.

There is a VERY SMALL risk of agranulocytosis with ATDs. This is what

doctors say to scare you off that path. It is easier for them, and cheaper

for the insurance company, to give you RAI, but IMHO, not in the patient's

best interest. You will need to be monitored regularly if you have RAI, and

will stand a very high chance of needing thyroid hormone replacement for

life afterwards.

P.S. Why should you not go on ATDs? Even a woman who is pregnant can be on

ATDs. I really wonder about your doctor...

At 12:14 PM 8/5/2003, you wrote:

>Hello,

>

>My name is and I'm 31. I've been reading with interest some

>previous postings. It's definitely opened my eyes as to the

>treatment possibilities out there.

[Guest guest]

Hi Crystal,

Welcome to the group. The usual starting dose for PTU is 300 mg, using 100 mg

3 times daily. With your higher dose, you are likely to become euthyroid

(normal FT4 and FT3) or hypothyroid sooner than the usual 6-8 weeks. With that

dose you should have tests at 4 weeks to prevent hypothyroidism from developing.

Be sure your doctor tests for FT4 and FT3 since TSH can't be used for

monitoring your meds. TSH, which is a pituitary hormone, can take quite some

time to

start rising. One of the earliest symtom of hypothryoidism is depression. Check

the list here for other symptoms so you'll know what to watch for. Take care,

Elaine

[Guest guest]

Hello Linnea,

Welcome to the group! You've have found a wonderful group of people that are

knowledgable, caring, and super supportive.

My name is Pat, and I am G-ma to , who is 30 months of age. His pics

are under Lee in the photo section. His g-tube was placed at 8.5

months of age, and let me tell you, although it was rough in the beginning,

it has been a godsend for us.

The Drs, here in Cleveland, missed his silent reflux, and he developed a

severe oral aversion. Feeding him, before the g-tube placement, was

horrible! Now, it's hard to imagine without the g-tube! LOL

We, too, will be at the convention, and are looking forward to meeting you

and !

Pat (g-ma to , RSS, 30 months, 21.4#, 30.6 " , G-Tube)

[Guest guest]

Linnea,

Welcome to the group!!! This place has been extremely helpful to me and I

know that it will be to you also! I have a 9.5mos son who is ~12lb and RSSIf you

have any q1uestions feel free to ask!

le mom to Datreon 9.5mos, 23.5in 12lb RSS, periactin

[Guest guest]

Linnea,

welcome to a wonderful faimly!!!!!!!!!!!!! i as all that are going to Chicago

will be glad to meet you and your child.

Cara(mom)71/2 rss Breena 4 Ethan 2

linnealehrer wrote:

Hello Everyone,

My name is Linnea, and I am a new member of the group. I have a

daughter, , who is 9 months old who has RSS. She is 11 lbs. 13

oz. and 23 inches. We will be attending the convention and are very

excited to meet all of you. is a terrible eater and just got a

G-tube 2 weeks ago.

Anyway, I have been reading a lot of the entries and thought I should

introduce myself. Thanks for sharing all of your stories and

experiences.

Linnea

[Guest guest]

Linnea,

Welcome to the group! It is good to have you aboard. Can't wait to

meet you too, in Chicago! I willbe there in one week! )

Jodi R.

's mommy

> Hello Everyone,

> My name is Linnea, and I am a new member of the group. I have a

> daughter, , who is 9 months old who has RSS. She is 11 lbs.

13

> oz. and 23 inches. We will be attending the convention and are

very

> excited to meet all of you. is a terrible eater and just got

a

> G-tube 2 weeks ago.

>

> Anyway, I have been reading a lot of the entries and thought I

should

> introduce myself. Thanks for sharing all of your stories and

> experiences.

>

> Linnea

[Guest guest]

> Hi Everyone

>

> My name is . My daughter is 4 1/2 years old and was

> just diagnosed RSS in October of 2003. In June of 2003 one of the

> pediatricians in her group heard a heart murmur (for the first

time)

> during an ear infection visit. We were scheduled to go to a local

> hospital to have an EKG performed, however, due to time frames we

were

> hooked up with a pediatric caridiologist who gave us horrible news

> that day which was that she had a very large hole in her heart. We

> tried to have the hole closed via a catheter, however, the hole was

> too large and underwent open heart surgery at Columbia

> Presbyterian Hospital in New York in November of 2003. Between the

> first visit with her cardiologist and her open heart surgery her

> cardiologist asked if she was ever seen by anyone for her size and

had

> her seen by a geneticist prior to her surgery who diagnosed RSS and

> said to follow up with an endocrinologist. Her pediatrician at

her 4

> year visit (a month and a half after her surgery) recommended an

> endocrinologist Dr. Lawrence Silverman (who will be at the Magion

> Foundation Convention this year) confirmed RSS and discussed the

> possibility of growth hormone.

>

> has been to her cardiologist on June 11 who said that she

does

> not have to come back for a follow up visit for another 3-5 years.

>

> She currently weighs 29 pounds and is 36 inches tall.

>

> After being diagnosed and reading some information a lot of her

first

> year of life makes sense to me now. was a poor eater and of

> course poor weight gain and as an infant ate every two hours and

only

> took in 2 ounces. She was seen by a gastrointerologist, had blood

> work done, a sweat test performed and no one ever picked up on

anything.

>

> This is all very new to me and my husband and our families and we

are

> not sure where to begin, what questions to ask, etc.

>

> Thank you for providing information and wonderful pictures.

>

>

Briggs

hi , I'm a new member also. One of my RSS children is

4yrs old. He weighs 26lbs. He is awesome but I stay worried about

him and his RSS 7yr old brother. It sounds like is doing

great since her heart surgery that is awesome thank the Lord. I

know that it was hard to deal with but I know you are glad it is

over. Both of my RSS sons have had surgery for different

conditions, it is no fun. The Lord is taking care of them. We

also have a 2 yr old son who came in weighing 9lbs 9oz. Wow.

needless to say he is fine. Anyway I feel your pain and will pray

for . Liz

[Guest guest]

Hi , welcome to the group!

We have a lot of odd similarities between our families! I also

have a daughter named , she's 9 years old (non-RSS) and I too

have a 4 1/2 year old daughter, Olivia, with possible RSS. Olivia

was taken prematurly by the Dr.s at around 30 weeks due to severe

IUGR and she never did start growing or gaining at an acceptable

rate. She was diagnosed with RSS a little over a year ago (3yrs, 3

months old) but now the genetesist isn't so sure. Another odd

similarity is that I was born with a heart murmer that was left

untreated and had open heart surgery to repair it and an aneurysm

almost 4 years ago.

You'll love this group and all of the wonderful info that everyone

shares, just ask!

Leah, mom to 9yrs and Olivia 4.5yrs, RSS/SGA??, OI, 19.5lbs,

33 " , lactulose, senokot, zantac, tums

> Hi Everyone

>

> My name is . My daughter is 4 1/2 years old and was

> just diagnosed RSS in October of 2003. In June of 2003 one of the

> pediatricians in her group heard a heart murmur (for the first

time)

> during an ear infection visit. We were scheduled to go to a local

> hospital to have an EKG performed, however, due to time frames we

were

> hooked up with a pediatric caridiologist who gave us horrible news

> that day which was that she had a very large hole in her heart. We

> tried to have the hole closed via a catheter, however, the hole was

> too large and underwent open heart surgery at Columbia

> Presbyterian Hospital in New York in November of 2003. Between the

> first visit with her cardiologist and her open heart surgery her

> cardiologist asked if she was ever seen by anyone for her size and

had

> her seen by a geneticist prior to her surgery who diagnosed RSS and

> said to follow up with an endocrinologist. Her pediatrician at

her 4

> year visit (a month and a half after her surgery) recommended an

> endocrinologist Dr. Lawrence Silverman (who will be at the Magion

> Foundation Convention this year) confirmed RSS and discussed the

> possibility of growth hormone.

>

> has been to her cardiologist on June 11 who said that she

does

> not have to come back for a follow up visit for another 3-5 years.

>

> She currently weighs 29 pounds and is 36 inches tall.

>

> After being diagnosed and reading some information a lot of her

first

> year of life makes sense to me now. was a poor eater and of

> course poor weight gain and as an infant ate every two hours and

only

> took in 2 ounces. She was seen by a gastrointerologist, had blood

> work done, a sweat test performed and no one ever picked up on

anything.

>

> This is all very new to me and my husband and our families and we

are

> not sure where to begin, what questions to ask, etc.

>

> Thank you for providing information and wonderful pictures.

>

> Briggs

[Guest guest]

Hi Liz, welcome to the group! if you go back to the previous few

posts there has been a lot of talk about kidneys as of late, they

should answer some of your questions. You'll love this group and

the sharing that is done here, we love all of the good news and are

good shoulders for the bad. How big were your boys when they were

born and how big are they now?

Leah, mom to 9yrs and Olivia 4.5yrs, 19.5lbs, 33 " , RSS/SGA??,

OI, lactulose, senokot, zantac, tums.

> Hi, I'm Liz. I have 2 adorable RSS boys. One is 7 yrs old and

one

> is 4 yrs old. We also have a 2 yr old that is fine. I just want

to

> be able to chat with others. I have so many questions and

> concerns. My latest is about an RSS site that list an increased

> risk of a liver tumor as possibly a part of RSS. Does anyone know

> anything about this? If so what do we do? How do we make sure we

> are protecting our kids from this. Anyway, enough for now. Liz

[Guest guest]

> > Hi, I'm Liz. I have 2 adorable RSS boys. One is 7 yrs old and

> one

> > is 4 yrs old. We also have a 2 yr old that is fine. I just

want

> to

> > be able to chat with others. I have so many questions and

> > concerns. My latest is about an RSS site that list an increased

> > risk of a liver tumor as possibly a part of RSS. Does anyone

know

> > anything about this? If so what do we do? How do we make sure

we

> > are protecting our kids from this. Anyway, enough for now. Liz

[Guest guest]

Hi Liz!!! Welcome to the very rare group of " moms with two kids

with RSS. " As I am sure you have heard by now, it is extremely

rare -- out of the 700 plus families in the MAGIC database, I think

you are the 4th family? And one family's two daughters have

different fathers!

Can you tell me what RSS site you saw that listed an increased risk

of a liver tumor? I wasn't aware of any websites devoted to RSS,

although I have found a LOT of misinformation on various medical

sites that have info on RSS that in some cases is 5-8 years old and

STILL on the website. I found the LPA website had info on RSS that

was completely out of date -- I finally got ahold of the website

man, who directed me to the physician who wrote the data, and gave

him all the new studies, and they corrected the misinfo.

Make sure to go to the www.magicfoundation.org website and read

that. You can call then 800-3MAGIC3 and they will also mail you

stuff. There are a bunch of us parents who are the volunteers for

this RSS/SGA division within MAGIC, and sadly, we are the only

nonprofit or any support group for RSS/SGA in the United States. So

it has been up to us to get new info out.

Stay on, call MAGIC and get the info, and you'll learn tons!

Welcome! My daughter is 8 1/2 yrs old, has been on growth

hormone, periactin for appetite, Zantac and Prevacid for reflux and

miralax for delayed gastric emptying/constipation for 3 1/2 years

now. She has gone from no where on the charts to 65% height and

25th percentile in weight (about 15th percentile weight-for-height).

Salem

> Hi, I'm Liz. I have 2 adorable RSS boys. One is 7 yrs old and

one

> is 4 yrs old. We also have a 2 yr old that is fine. I just want

to

> be able to chat with others. I have so many questions and

> concerns. My latest is about an RSS site that list an increased

> risk of a liver tumor as possibly a part of RSS. Does anyone know

> anything about this? If so what do we do? How do we make sure we

> are protecting our kids from this. Anyway, enough for now. Liz

[Guest guest]

hi linnea!!

wlecome to this wonderful group!! cant wait to meet you at the

convention!!

jodie

(nicholas-6 nonrss, christopher-3 rss 24lbs 1.7oz 34 " periactin, ght

genotropin(on hold until convention), ADHD(possible), assmentry(left

side 1cm), johnathon-1yr nonrss)

> Hello Everyone,

> My name is Linnea, and I am a new member of the group. I have a

> daughter, , who is 9 months old who has RSS. She is 11 lbs.

13

> oz. and 23 inches. We will be attending the convention and are

very

> excited to meet all of you. is a terrible eater and just

got a

> G-tube 2 weeks ago.

>

> Anyway, I have been reading a lot of the entries and thought I

should

> introduce myself. Thanks for sharing all of your stories and

> experiences.

>

> Linnea

[Guest guest]

In a message dated 7/14/04 3:02:13 PM Eastern Daylight Time,

jbriggs1970@... writes:

<<

From: jbriggs1970@... (jbriggs1970) >>

Hi ,

Welcome to the RSS group. My name is and I have a 3 1/2 y/o son with

RSS and we live in NY. Just curious do you live in NY too? I see your

daughter had surgery at Columbia Presbyterian. Will you be attending the

convention

this year? This site has a wealth of information that can help you and the

members are all great.

mom to Jordan RSS/SGA

[Guest guest]

Hello Lee, Welcome to the group. It is great to have you hear, and

please feel free to offer your input at anytime. I have a two year

old boy named , who is RSS. I would love to hear from you what

it is like as an adult. I have no idea what my little man will be

faced with. Thank you so much for becoming a part of this group.

Jodi R.

's mommy

> Hello, my name is Lee.I have just joined this group. I am a 20 year

> old male from Liverpool England. I have RSS and i am 4ft 9. Feel

free

> to email me anytime if you have any questions. Kind regards. Lee

[Guest guest]

Welcome Lee,

It is nice to have you aboard! I am the mom of a 3 1/2 year old with

possible RSS...It will be good to hear from some grown up males...

Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

and Jed (11 years old) Tourettes, CAPD,SVT.

SW Orlando FL

**Push for Bush 'cause Kerry is scary**

Check out my group:

http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728

[Guest guest]

Hi Lee,

Welcome to our group. Glad to have you hear. Feel free to answer any

question at any time.

Also, did you know that there is another group for people with RSS.

It was started by ( I think) and she lives in England.

Anyway you might want to join that list as well. They are not very

chatty like we are.

The web address is http://health.groups.yahoo.com/group/RSS-People

Welcome aboard.

Ken M

> Hello, my name is Lee.I have just joined this group. I am a 20 year

> old male from Liverpool England. I have RSS and i am 4ft 9. Feel

free

> to email me anytime if you have any questions. Kind regards. Lee