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Great idea! I haven't been around much lately and feel like I don't

know who is who anymore. Here is our info...

1). First Name, Last Initial --

& Jon B.

2). Where you live, City and State only.

Portland, Oregon

3). How many children you have & how many with RSS. Please include

ages, heights and weight especially for the children with RSS.

Colin & Hayden - 39 mo. old boy/girl twins. Colin has RSS and is

approx. 37 " and 28lbs. Hayden is approx. 41 " and 32lbs.

Grant - 3 months and about 14 lbs and not sure on height.

4). Birth height, weight, premature and by how much.

4lbs. 3 oz. and 17 " at 37 weeks.

5). Medication(s), feeding tube and how long they have been on it.

G-tube since 7 months of age. He is currently on Prilosec

(7ccs/twice a day), Periactin (2ccs/twice a day) and Miralax.

6). Doctor or hospital treating your RSS child(ren). This is really

useful for new members.

Oregon Health Sciences University for Feeding clinic and therapy. We

have seen Endocrinologists at both OHSU and Emanuel hospitals.

7). when diagnosed.

At 6 mo. of age by a geneticist.

8). Anything else you want to add.

We are going to the convention this year!

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1). First Name, Last Initial

S.

2). Where you live, City and State only

Fairbanks, AK>

3). How many children you have & how many with RSS.

Donovan 10 yr 5 1/2yr RSS and baby on the way

will be here in late may

4). Birth height, weight, premature and by how much.

full term 7lbs 10oz 18in

5). Medication(s), feeding tube and how long they have been on it.

GH treatment started in July 03

6). Doctor or hospital treating your RSS child(ren).

His Ped is Dr. Foote in Fairbanks.

and we go to Anchorage every few months to

see the Endo at providence Childrens hospital

7). when diagnosed.

was dignosed on his 4th birthday.

8). Anything else you want to add.

I love this site it helps that i'm not the only person

going through this :o)

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Hi Ken,

1) Harry and C.

2) East Northport,NY

3) two children 11, and 4 (5 in April) RSS 33 lbs 13 oz, 40 inches

as of today. (We saw Dr. H)

4) Birth 19 inches, 5lbs 4 oz

5)GH & periactin

6)Dr. H

7) 10/99 UPD c7

Harry C

Roll Call

> Hi everyone,

>

> A couple of weeks ago I set up a poll to ask if we should have a

> roll

> call. The majority of voters voted yes, we should.

>

> So, please report in with:

>

> 1). First Name, Last Initial -- we have a lot of Debby's and

> Jodi's

> on the list.

> 2). Where you live, City and State only.

> 3). How many children you have & how many with RSS. Please include

> ages, heights and weight especially for the children with RSS.

> 4). Birth height, weight, premature and by how much.

> 5). Medication(s), feeding tube and how long they have been on it.

> 6). Doctor or hospital treating your RSS child(ren). This is

> really

> useful for new members.

>

> Optional -- actually the whole thing is optional

> 7). when diagnosed.

> 8). Anything else you want to add.

>

> I'll go first.

>

> 1).My name is Ken M. -- not too many of those on the list.

>

> 2). We live in Hollis, NH about 50 mile north west of Boston.

>

> 3). We have one child, and he has RSS. He will be 7 on April

> 30. He is 43 " tall and weighs 35 lbs.

>

> 4). He was born 1 month premature, delivered by C section. He was

> 4lbs 5 oz and 17 " long at birth. He was fed by a g-tube for 3 weeks

> but then ate on his own and came home when he was a month old.

>

> 5). He is on growth hormone and has been since July 2002. We just

> stopped giving him periactin but it looks like we will need to

> start

> that up again. He does not need a feeding tube but we are always

> just

> one step away from that.

>

> 6). is being treated for his RSS by Dr. Alyne Ricker at

> Joslin

> Diabettes Clinc, which is just across the street from Children's

> Hospital in Boston.

>

> 7). He was diagnosed when he was about a year old by Dr. Ricker.

> It

> was confirmed by a geneticist, Dr. , also of Childrens'

> hospital.

>

> I hope this covers everything.

>

> Ken M

> :)

>

>

>

>

>

>

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1). First Name, Last Initial -- we have a lot of Debby's and Jodi's

on the list.

2). Where you live, City and State only.

3). How many children you have & how many with RSS. Please include

ages, heights and weight especially for the children with RSS.

4). Birth height, weight, premature and by how much.

5). Medication(s), feeding tube and how long they have been on it.

6). Doctor or hospital treating your RSS child(ren). This is really

useful for new members.

Optional -- actually the whole thing is optional

7). when diagnosed.

8). Anything else you want to add.

I'll go first.

1).My name is Barbara H.

2). I live in/on Long Island, New York

3). I have 4 children, 1 biological, three adopted from Belarus. My eldest

is 16, Maggie just turned 6 (My RSS child), another girl 4 and a boy 3.

Maggie is 33 " and weighs 29 lbs. Her younger sister is about the same

height and weight. The two girls are biological sisters and look close to

identical, however Maggie has the classic triangular face, small jaw - she

also has webbed toes.

4).Maggie was 4 lbs 6 oz at birth, full term

5). Maggie has been on growth hormone since Feb 03, other than her size that

she is very healthy has an enormous appetite and tons of energy. She has

grown a little over 4 inches since she started GHT

6). Maggie is being treated by Dr. Castro-Magana from Winthrop Hospital in

Mineola, NY

7).She was diagnosed in September 2003, a year after we adopted her

8) Maggie was born and spent the first three years of her life in an area

contaminated by the Chernobyl Disaster.. I suspect, but no one seems to

agree that the high doses of radiation have something to do with her RSS,

there are lots and lots of kids with chromosomal problems there.

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hey team lapish!!

congrates on the new baby that you are waiting the arrival of!!

Jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6,

johnathon-9m nonrss)

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Great idea. I never post anymore, but often check in to see what

people are saying, what information is new, how kids are doing,

etc.

1. name: Pamela G.

2. place: Ojai, CA

3. kids: I have two children. Daughter belle with RSS is 5

1/2 years, 41 1/2 " and 34 pounds. Son , non-RSS, is

20 months, 31 1/2 " and 25 pounds.

4. birth history: She was 4 lbs 11 oz and 17 1/2 " at 38 weeks,

induced.

5. meds: Periactin

6. endo: Dr. Mitch Geffner, CHLA

7. diagnosis: by me, via MAGIC, at 10 months. Professional

diagnosis made by geneticist at CHLA at 2 1/2 years. Pretty

much confirmed by Dr. H. this past summer.

8. extra: Her bone age is equal to her chronological age, so it

looks like GHT is not really an option for us.

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1). R..

2).Orlando Florida

3). I have 2 boys ages 11 and 3... Liam, my 3 year old is IUGR/SGA born 4

lbs 3 oz 16 inchs long at 35 weeks. He is now 27 lbs and 34 inchs tall. We

are currently fighting the insurance for GH approvel.Jed was also IUGR born

at 36 weeks weighing 4 lbs 10 1/2 ozs but was 181/2 inchs long. He is now 11

years old and 4 feet 7 inchs tall.

5).Liam has Hypothyriod and Epilepsy.

..

6). Liam sees Doctor Banks at the neumours childrens Clinic in Orlando

Florida.

It has never been mentioned to me, but I think he may have RSS as he does

seem to have some of them features to me.

Orlando Florida

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Jodi-

Thank you! We are very excited!

Team Lapish

> hey team lapish!!

> congrates on the new baby that you are waiting the arrival of!!

> Jodie

> (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6,

> johnathon-9m nonrss)

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Pamela G.,

I saw in your roll call post that belle's bone age is equal to her

chronological age,

and therefore you think GH is not an option. This is not necessarily the case.

My son

is 10, and his bone age is around 13 years of age (waiting on latest bone age

results).

He started out with a significantly delayed bone age & over the years it slowly

caught

up & then surpassed his chronological age. He has been on GH since 7/01 and

Lupron Depot since 1/02. Last month he stopped Lupron, per Dr. H, & started

Aromasin. Depending on the reason for bone age advancement (can be precocious

puberty, adrenarche, or other reasons), there are meds you can use in

conjunction

with GH to stop the advancement of the bone age. You should check into this if

you

would have considered GH otherwise. Doctors would need to run some specific

tests

to check for precocious puberty or adrenarche.

Kim C.

> Great idea. I never post anymore, but often check in to see what

> people are saying, what information is new, how kids are doing,

> etc.

>

> 1. name: Pamela G.

> 2. place: Ojai, CA

> 3. kids: I have two children. Daughter belle with RSS is 5

> 1/2 years, 41 1/2 " and 34 pounds. Son , non-RSS, is

> 20 months, 31 1/2 " and 25 pounds.

> 4. birth history: She was 4 lbs 11 oz and 17 1/2 " at 38 weeks,

> induced.

> 5. meds: Periactin

> 6. endo: Dr. Mitch Geffner, CHLA

> 7. diagnosis: by me, via MAGIC, at 10 months. Professional

> diagnosis made by geneticist at CHLA at 2 1/2 years. Pretty

> much confirmed by Dr. H. this past summer.

> 8. extra: Her bone age is equal to her chronological age, so it

> looks like GHT is not really an option for us.

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Hi

This is AmyMarie and B

from Falls Church Va

We have three children, Will 20, Breanna 14 and Maxi 5, who has WKW, originally

thought to be RSS but now without a diagnosis.

Maxi is 5, weighs 30 pounds and is just shy of 38 inches tall.

He was born at thirty seven weeks by C-section at 6.5 pounds and 18 1/2 inches.

His growth fell off immediately and at 6 weeks he attained his birthweight once

again. At Two he was 22 inches and 16 pounds.

He has had many midline anomolies, a small corpus colosum,doesnt cross his body

at the midline with the other limbs, high arch to the palate, mandibular

hypoplasia (small jaw), hearing imapaired, foveal hypoplasia, a tremor,

hypotonia, was severely delayed (but catching up -early intervention works, he

eats around the clock, never needed a feeding tube, but he gets really skinny

sometimes. He has big blue eyes and is always moving.

Max takes melatonin now instead of a prescribed sedative at night, and claritin.

No other meds needed, and he snacks about six times a day and twice throughout

the night.

His endo is at town U Hospital, but I wouldn't reccomend him, or getting

treatment from any of the docs here in Northern Va or Washington D.C. Our

Experience has been less than satisfying, and we have been to them all. He has a

group of signs and symptoms and no one is intertested in seeing the whole

picture. That and they are very growth hormone unfriendly here. He has been at

Childrens in DC too without much success. He is being watched by NIH in

Baltimore to see what happens but they aren't diagnosing him either. If you have

a child in D.C. go to Chicago or New York for treatment. I think that covers it.

Hugs, to All,

AmyMarie

--

We Are All One

There Is Enough

Love Is The Answer

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Hi everyone,

1). First Name, Last Initial --

O.

2). Where you live, City and State only.

Grand Prairie, Texas

3). How many children you have & how many with RSS. Please include

ages, heights and weight especially for the children with RSS.

I have 2 kids

1 with RSS- nathan-4, 30 in, 20 pounds

1 with out RSS- Halona-7 months, 25in, 19 pounds

4). Birth height, weight, premature and by how much.

17 in, 5 pounds, 2 weeks late

5). Medication(s), feeding tube and how long they have been on it.

tried periactin-didnt work, pulmacort for asthma

6). Doctor or hospital treating your RSS child(ren). This is really

useful for new members.

Dr. Carla at Cook's Children's Hospital in Fort Worth, TX

7). when diagnosed.

diagnosed when he was 16 months old

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Hi everyone,

1.My name is Witold W.

2.We live in Legnica ,Poland

3.We have two kids:Marta,nonRSS and Agata-RSS

4.She was born full term-4.1 lbs and 44 cm.

5.SHe eat on her own since she was born

6.Warsaw

7.She was diagnnosed when she was 2 months old

Roll Call

> Hi everyone,

>

> A couple of weeks ago I set up a poll to ask if we should have a roll

> call. The majority of voters voted yes, we should.

>

> So, please report in with:

>

> 1). First Name, Last Initial -- we have a lot of Debby's and Jodi's

> on the list.

> 2). Where you live, City and State only.

> 3). How many children you have & how many with RSS. Please include

> ages, heights and weight especially for the children with RSS.

> 4). Birth height, weight, premature and by how much.

> 5). Medication(s), feeding tube and how long they have been on it.

> 6). Doctor or hospital treating your RSS child(ren). This is really

> useful for new members.

>

> Optional -- actually the whole thing is optional

> 7). when diagnosed.

> 8). Anything else you want to add.

>

> I'll go first.

>

> 1).My name is Ken M. -- not too many of those on the list.

>

> 2). We live in Hollis, NH about 50 mile north west of Boston.

>

> 3). We have one child, and he has RSS. He will be 7 on April

> 30. He is 43 " tall and weighs 35 lbs.

>

> 4). He was born 1 month premature, delivered by C section. He was

> 4lbs 5 oz and 17 " long at birth. He was fed by a g-tube for 3 weeks

> but then ate on his own and came home when he was a month old.

>

> 5). He is on growth hormone and has been since July 2002. We just

> stopped giving him periactin but it looks like we will need to start

> that up again. He does not need a feeding tube but we are always just

> one step away from that.

>

> 6). is being treated for his RSS by Dr. Alyne Ricker at Joslin

> Diabettes Clinc, which is just across the street from Children's

> Hospital in Boston.

>

> 7). He was diagnosed when he was about a year old by Dr. Ricker. It

> was confirmed by a geneticist, Dr. , also of Childrens' hospital.

>

> I hope this covers everything.

>

> Ken M

> :)

>

>

>

>

>

>

>

>

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Hi all,

I have not been a very active participant in the list serve but feel it is a

very important and useful tool for all parents. Wishing everyone a Happy

Spring!

1, H.

2. We live in Mount Vernon, NY

3. We have two children

- (1/21/96) 8 yrs old, 46inches, 41 pounds (Non - RSS)

Henry - - (6/22/00) 3yrs old, 36.4 inches, 29 pounds 10 ounces (RSS)

4. - Birthweight - 7pounds, 11ounces, 40 weeks

Henry - Birthweight - 7pounds, 7ounces, 40 weeks

5. - no meds - Meconium(sp?) aspiration at birth - no lasting

effects, surgical removal of a gigantic nevus on the back of her head. Ballon

inserted under her scalp stretched her skin to replace what was removed

from the birthmark (18months - 2years)

Henry - no problems during pregnancy or birth. 12/11/02 Nissen,

G-Tube, Pyloroplasty

Meds

5.8ml twice a day - cyproheptadine, 15mg in the morning,

oral-suspension Prevacid, 4ml in the evening Zantac, 36 units Nutropin,Petpamen

Jr. 40ml

per hour/8hour per night, Calmoseptine ointement(helps with leakage from the

G-Tube)

6. Endo - Dr. Harbison, GI - Dr. Ursea, Ped Surgeon - Dr. Spigland - all at

NY Hospital (Well at least as of 3/27)

7. & 8. After Henry's 2yr old check up his Ped. suggested we see an Endo

since he had only gained a few ounces and grown an inch in one year. That

night I found RSS online and knew Henry fit those characteristics. The coma

fingers I noticed at birth along with many of the other phenotypes were to

obvious

to ignore. The major mystery is that he was average at birth for height and

weight and stayed there for 6 months just like his sister. At that age they

both became mobile and it made sense that they didn't gain weight as quickly.

Both children breast fed well but was eating solid foods by a year old

but Henry still only eats soft foods or carbs that break down in your mouth.

He refuses to eat anything but crackers, cereal, toast, peanut butter,

waffles, pancakes, cookies, yogurt, ice cream. - no meat, no dairy except

chocolate

milk, no vegtables, no pasta, no rice.

His cognitive, verbal, gross and fine motor skills are excellent and 3 other

Endo's did not think he was RSS because of these facts and his birth stats.

But I knew there was something else happening besides " Henry just needs to eat

more " .

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1. H.

2. Cullman, Alabama

3. - 6yrs., 24.8lbs., 38inches

4. Born full term 4lbs. 13 oz., 17inches

5. Diagnosed at age 4 with RSS(finally)

6. Dr. McCormick Children's Hospital

7. Growth Hormone 12cc, No other meds.

If there is anyone else in Alabama that has a child with RSS, we

would like to correspond. Also, if anyone has any suggestions about

anything, please let us know. We would appreciate any advice.

Thanks.

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Hi Everybody

1.

2. Keystone Heights, FL

3. We have 5 children. Ken is 16, is 14, is 11,

Connor (from Korea and has been here 5 months) is 5 and 4 (RSS)

4. We have only had for 1 1/2 years and we do not have any

information about his birth

5. We are coming to the convention so we hope Dr. H can see us.

Mom of 5 GREAT kids

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Hello, here is my " Roll Call "

1) Stacey B.

2) Mankato, MN

3) , 12, non-RSS (my stepson), Logan, 3, RSS, 35 " & 27#

4) Birth weight 4#8oz, 17 " , taken by c-section at 37 weeks because

he had stopped growing and the doctors didn't know why, he was also

breech, etc.

5) Prilosec, Reglan, Zyrtec, Genotropin - no feeding tube (I figure

we are pretty lucky - ?)

6) Dr.Cathy , Peditrican that thought he had RSS, Diagnosed by

Dr. Babovic,Genetics,Mayo Clinic/Rochester, MN, has seen Dr.

Brown,Ped.Endo at Univ.of Minnesota, now seeing Dr. Larson,

Ped.Endo, Mankato Clinic

7) Diagnosed with RSS at 6 months of age, after not gaining weight,

failure to thrive, etc.

8) Also has Reflux, Milk Allergy, Peanut Allergry, Environmental

allergies(mold,dust mites,trees,pollen,etc), has had tubes put in

his ears twice for chronic ear infections at 1 year of age, just had

the " permanent " tubes taken out in February.

9) Works with Speech therapy,Occupational Therapy,Early Childhood

Special Ed, just stopped working with Physical Therapy.

That hopefully covers the majority of it - though there is more -

long story!

Stacey :)

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1. Lindsey G.

2. Yorktown, IN

3. Jack (RSS/SGA) & Joe - 28 mo old twins, and Ben, 8 mo. Jack is

31 " , 20 lbs while his twin is 35 " , 32 lbs. Ben is almost as big as

Jack.

4. Jack was 2 lbs, 6 oz (by comparison, Joe was 4 lbs, 8 oz.).

Birthdate 11/25/01. They were born at 34 weeks because of heartbeat

fluctuations and mostly (in my opinion) because they thought Jack

would grow better in the NICU than in utero. They were wrong of

course :-) but both NICU's he was in were fantastic. He was in the

hospital 2 months before coming home.

5. Jack takes periactin but eats decently even without it. Slow

growth has been our only BIG issue, though we've had plenty of

hospital visits since he catches everything under the sun (rotavirus,

pnuemonia, etc.). Hoping to start GH in 2005 after Jack turns 3.

6 & 7. Geneticist at St. s Childrens Hospital in Indpls., Dr.

Esocobar, has more or less diagnosed Jack as RSS in the last 6

months. We've been seeing Dr. E. since Jack was about 10 months

old. Because he seems to be a mild case, Dr. E. is reluctant to 100%

diagnose him. I hope to get confirmation from Dr. H. at convention

this year. We've seen misc. other specialists along the way from St.

s and Riley Childrens Hospital (also in Indy) but only other

regular doctor is an awesome pediatrician in Indy, Dr. Rob Rudicel.

8. I used to be more regularly involved in this list but after

having my third child, dropped out for months. I'm trying to get

back involved because this list helps so much! I'll probably

continue to be a lurker because finding time to write is hard to do.

If anyone wants to contact me personally, my other email address is

lcrafter2 @aol.com.

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Dear Folks,

Well, I just mailed off the Magic Foundation's table cloth to them.

However, in that box, they will receive the profits from our fund

raiser which, after the final check was wrote, totaled $3900.00. We

exceeded my goal by 900.00. Yippeee!

Anyway, onto the roll call.

The Kearns' live in Lynchburg, VA

, , Graham 7 ADD, Cameron 4; Connor 18 mo's. SGA/RSS,

Periactin, Zantac, Pediasure 30 cals, asymmetry in the left leg

treated with lifts and arch support. PT for ciphosis (a c curve to

the spine due to normal head size but small body)- ST - OT -

Nutrition counseling.

Connor was tentatively diagnosed with RSS by Dr. ph Wagstaff of

University of VA at eights months of age. Since Connor doesn't have

the clinodactyl issue and noticeable asymmetry at that time, the Dr.

was loath to call it full blown RSS. Dr. H. felt (last Summer)

that Connor was SGA and that we had to monitor him another year for

lack of growth before making the RSS call. However, with the

asymmetry issues, eating issues and total lack of growth or

significant weight gain, I feel that he is RSS. We will get a

confirmation from Dr. H. this summer at convention. Presently,

Connor is 27.5 inces long and weighs 15 lbs 9 oz's. We've been

losing weight lately due to teething, food alergies developing and a

cold. Our best weigh in was 15lbs 15 oz's a couple of weeks ago.

Connor's birth weight was 4 lbs 13 oz. He measured 17.5 inches

long. He was 40 weeks gestation. He was undiagnosed IUGR (Talk

about my O.B. doing a tap dance in the delivery room. Two days

earlier she predicted a six pound baby.) He was also born in a ton

of meconium and had to be intubated after birth. His stay in the

NICU was for only two hours as he could maintain his Oxygen levels

and body temp. The only difference in Connor's pregnancy compared

to his brother's was that I gained only 17 lbs compared to the 35 I

put on with the other two.

Graham was 3 weeks early and weighed 6 lbs 15.5 oz's. Cameron was

10 days early and weighed 7 lbs 7oz's. All my births were done

naturally without drugs save for antibiotics.

Good Dr.'s in our area: Genetics: Dr. Wagstaff of UVA,

Charlottesville VA. Dr. Hart in Roanoke Va for G.I. issues. Dr.

Mumper in Lynchburg for local Pede. We start seeing a Dr. of

UVA for Pede Endo in October and hopefully Connor's BMI will be good

enough to start Growth Hormone.

That's all for now.

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  • 2 weeks later...
Guest guest

1. and L.

2. Brooklyn, NY

3. One child with RSS. Jordan 3y/o 36 inches and 29lb 2oz

4. Born at 40 weeks via C-section 18 inches 5lb 1 oz

5. On periactin since 9/02 and GH since 11/03

6. Is followed by Dr. Harbison

7. Diagnosed with RSS by Dr. Harbison 12/01

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