Re: introduction

[Guest guest]

Hi Debbie,

This is Ken Merrithew. We met at the Holliston RSS potluck lunch. I am glad

to hear from you. I hope all is well with you and your family.

I hope you remember me. My son has RSS. 's weight gain seems to

go in stages. He will gain for 3 weeks then hold at a weight for up to 2

months then shoot up again. Sort of like a stair step grwith pattern.

From what I have learned, feeding tubes are used for kids who have an

extremely poor appetite and have not responded to periactin and are losing

weight or are just not gaing no matter what.

Since Ellis seems to be growing at the usual RSS glacial pace you may not

need to do anything. However, since he is almost 5 and weights the same as

my 3 year old RSS son I would consider periactin. It might give him a few of

extra pounds and speed up his growth slightly.

Who is your pediactric endocrinologist? We are seeing Dr. Alyne Ricker at

Children's in Boston. I think if Ellis were her patient she would probably

have him on periactin but I am not a doctor and I am just guessing.

One thing I have learned from this list is to not be afraid to question your

doctor or seek out a second opinion regarding his treatment. It may not shed

any more light on the subject but it will at least stop you from wondering

later if ther was something else to do.

I hope this helps.

Ken M

introduction

hello,

my name is debbie codd. my son is ellis, his twin brother is elliot and

younger sister is gwyneth. ellis is five, as of june. he is 24lbs. and 37

1/2 " tall. his bone age is a year to a half a year less. we aren't using

growth hormone, he doesn't have a g-tube, he isn't on any drugs. he was

born 1lb 14oz, via c-section at 36 weeks, in boston. (his brother was 5 lb.

5 oz.) he was in intervention services when he was 6 mos. old, then speech

and physical therapy in nursery school when he was three. and for his

pre-kindergarten eval. they've said he's up to his age in both areas. he

has no assymetry, but has all typical physical charac., as well as

undecended testes, which were operated on at age 3. his growth and weight

gain have never flattened out. gains have been small and slow but he

continues on an upward curve. we have some cognetive questions, which i

think will become clearer to us when he enters school. he wasn't diagnosed

until he was 3 1/2 years old.

that's ellis in a nutshell.

i have some questions for everyone.

we attended the potluck in holliston, and i was amazed to see and hear that

so many children were on g-tube and/or periactine. i know that my son was

born the same size as everyone and continues to follow a similar path, but

not once has anyone ever suggested a g-tube or drugs. so i came away from

the potluck kind of confused. am i doing enough for ellis? were the kids

that are using these things all " failure to thrive " ? what's the criteria

for this stuff? i guess i'm mostly concerned that my doctors never

mentioned anything, however they've always said that his upward gains were

poitive and that if he'd started loosing, then they'd do something. is that

the main reason behind these interventions, to stop backwards movement in

the area of growth? i don't want anyone to think i'm knocking their

choices, but i need to know that i'm also making the right ones for ellis.

his appetite changes. i also found that he ate well during a vacation, and

that seemed to be due to the availability of food. he grazed, but still ate

well during his meals. i tend not to leave food out at home because i will

eat it or his little sister will. actually, i'm considering setting up a

snack station, that he can get to but not his sister, to see how that would

go for him.

we've tried all the shakes and mixtures and found that if he didn't throw it

up because it was too heavy on his stomach, he wouldn't eat his meals. so

basically, he eats with the rest of us. i try to give him the high fat

during regular meals. if only he wouldn't stare so much during the meal.

the other kids have to be tired of hearing, " ellis, wake up. "

sorry this is long, but since it's my first e-mail i thought i'd put it all

out there. please let me know your reasons behind g-tubes, etc., so i can

talk to his nutritionist and endo with more info.

thanks for " listening " ,

debbie

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[Guest guest]

Hello Debbie,

Welcome to the group!

Your Ellis sounds a lot like my Storm, only Storm was diagnosed at 10

months. Storm takes no meds and has no g-tube or anything else. The

only thing he does extra is drink one or two cans of pediasure every

day. This has helped his weight gain.

Storm will be 5 in August. He now weighs 25 lbs. and he is 37 1/4 "

tall. Pretty close to your sons size. Storm also has no assemetry.

He's just soooooo skinny.

We are going to the Magic foundation convention this summer for the

first time and hope to learn more and find out if we should be doing

more for him than we are. Some of the most experiences Dr.s in RSS

will be speaking.

Hope this helps, your son is not the only one without all the extra

" stuff "

Carmen Snyder, Mom to Storm,RSS,4yr11mo. and Paisley 7 yrs.

[Guest guest]

Welcome Debbie!

My name is . I have a 16 month old son, who has RSS.

also has a big brother who is 3 1/2 named who does not have

RSS. I hope you enjoy us all, this list has given me great comfort &

support. At times even better support than family & friends. Josh does not

have a g-tube. I have the pericatin but have not started it yet. Because

he is terribly cranky while getting his molars I was afraid to try anything

new. We are also going to the conference, so we will try the meds when we

get back.

has had many other complications along the way. He also has

metabolic acidosis, and had open heart surgery in March. ( Came through it

like a pro!) He also is tongue tied and has chordee. Other than his small

size he runs around like crazy & gets into places where most kids could not

possibly fit! He finds this hilarious! has a pretty good appetite.

He tends to eat better on the go then when he is confined to his highchair.

I think he's afraid he'll miss something. Your son is older than mine so

I'm sure you've already faced many challenges that are yet to come for us,

but if there is anything I can help you with feel free to ask. - mom

of (3yrs) & (16 mons 12lbs5oz RSS, ASD-repaired)

[Guest guest]

Hi Debbie -

Well, I agree with everything everyone wrote to you so far. Each family has

to make the decision that is best for them.

A couple points from a personal side. First, our 4 1/2 year old daughter

is mild RSS, slight asymmetry, has chromosomal markers, weighs 30lbs

and is 38 1/2 inches tall (she has a 6'4 " dad and very tall relatives on all

sides).

1) Re doctors. We have seen the best and the worst. Just because someone is

" Chief " doesn't mean they know a whole heck of a lot about RSS. We have

learned the most about RSS from a) this list; and Dr. Harbison in New

York. Although Dr. Harbison can be quite, hmm, how to say nicely, " tough "

and " her way or the highway " - she is awesome. She knows things about RSS.

2) Treatment. Until a month ago, we did nothing. was just fine,

we thought, just little. We had gone through major nutritional counseling

and has a voracious appetite and eats over 1700-2000 calories a day.

Most RSS kids do NOT have appetites, which only compounds their lack of

weight gain.

Therefore, G-tubes can be a lifesaver for people whose children don't want to

eat. However, I don't believe any doctor would recommend a G-tube to just

any RSS child. All 3 of L's major doctors (Dr. H in NYC and the two chiefs

at UCLA) all agree that for an RSS child who has an appetite and is gaining

on their own curve, a G-tube is not necessary.

3) Periactin: Most doctors, we have found, will recommend against this,

especially for a child with a good appetite. However, Dr. H (who has over 40

RSS patients) has found a history of weight gain with RSS patients who have

good appetites and slow weight gain. We were hesitant. We tried Periactin

once, only to quit 2 weeks into it. We finally started again 4 weeks ago.

The first 3 weeks were HELL!!!!! The temper tantrums were horrible. I kept

thinking, " why are we doing this we she eats normal anyways " (which is what

all our other doctors told us). But Dr. H made us promise to keep going.

Well, has gained over 1 1/2 pounds in 3 weeks!!!!! She has gained

only 1/2 a pound in the YEAR before!!!! Somehow, the Periactin works. And

her temper tantrums are subsidizing. Periactin is just an antihistimine,

not any major strange drug.

OK. Enough. I won't even begin to get into GHT (which we have been

researching for the past 3 months). This email is too long as it is.

I would strongly encourage you to keep on this list, keep learning, and make

sure that you have a doctor that has more than one other RSS patient!

Above all, stay true to you and your family. Each of us has to live with our

own decisions, and no one else. This is an awesome support group, and no one

judges you on your decisions. They just give advice and support.

jennifer Salem ()

[Guest guest]

Hi Debbie -

Well, I agree with everything everyone wrote to you so far. Each family has

to make the decision that is best for them.

A couple points from a personal side. First, our 4 1/2 year old daughter

is mild RSS, slight asymmetry, has chromosomal markers, weighs 30lbs

and is 38 1/2 inches tall (she has a 6'4 " dad and very tall relatives on all

sides).

1) Re doctors. We have seen the best and the worst. Just because someone is

" Chief " doesn't mean they know a whole heck of a lot about RSS. We have

learned the most about RSS from a) this list; and Dr. Harbison in New

York. Although Dr. Harbison can be quite, hmm, how to say nicely, " tough "

and " her way or the highway " - she is awesome. She knows things about RSS.

2) Treatment. Until a month ago, we did nothing. was just fine,

we thought, just little. We had gone through major nutritional counseling

and has a voracious appetite and eats over 1700-2000 calories a day.

Most RSS kids do NOT have appetites, which only compounds their lack of

weight gain.

Therefore, G-tubes can be a lifesaver for people whose children don't want to

eat. However, I don't believe any doctor would recommend a G-tube to just

any RSS child. All 3 of L's major doctors (Dr. H in NYC and the two chiefs

at UCLA) all agree that for an RSS child who has an appetite and is gaining

on their own curve, a G-tube is not necessary.

3) Periactin: Most doctors, we have found, will recommend against this,

especially for a child with a good appetite. However, Dr. H (who has over 40

RSS patients) has found a history of weight gain with RSS patients who have

good appetites and slow weight gain. We were hesitant. We tried Periactin

once, only to quit 2 weeks into it. We finally started again 4 weeks ago.

The first 3 weeks were HELL!!!!! The temper tantrums were horrible. I kept

thinking, " why are we doing this we she eats normal anyways " (which is what

all our other doctors told us). But Dr. H made us promise to keep going.

Well, has gained over 1 1/2 pounds in 3 weeks!!!!! She has gained

only 1/2 a pound in the YEAR before!!!! Somehow, the Periactin works. And

her temper tantrums are subsidizing. Periactin is just an antihistimine,

not any major strange drug.

OK. Enough. I won't even begin to get into GHT (which we have been

researching for the past 3 months). This email is too long as it is.

I would strongly encourage you to keep on this list, keep learning, and make

sure that you have a doctor that has more than one other RSS patient!

Above all, stay true to you and your family. Each of us has to live with our

own decisions, and no one else. This is an awesome support group, and no one

judges you on your decisions. They just give advice and support.

jennifer Salem ()

[Guest guest]

Hi, Debbie. We, too, were at the Holliston gathering, but I am having

difficulty recalling your face. My son is Max, the 11 year old (at the

time - he's now 12) with red hair. Max had a g-tube that was removed last

summer. His was because he was a failure to thrive baby. In other words,

from 2 months on, he just refused to eat. We had no choice because it was

that or starve to death. It turns out that he had severe reflux which

prevented him from eating without pain.

The next thing we discovered about Max was that he was severely hypoglycemic

and could not go all night without eating. That, too, played into his

having the g-tube. He had to be fed overnight to keep up his blood sugar.

So, you see, we did not have a choice in the tube feeding department. It

was necessary for his survival. If his basic instinct did not tell him to

eat, then we did it for him. Today he is tube free and a happy camper. He

is at sleep away camp for the first time and having a blast. It is so nice

to see him acting like and participating in normal boy things. Max does get

gh shots, though. He was much too small and we decided to go that route.

That is a very personal decision.

I hope this helps.

Jodi

[Guest guest]

Hi Debbie,

Welcome to the list! We actually met at Marks gathering. I'm the triplet Mom

from CT with the little guy, . I remember Ellis and his brother very

well. They were the cowboy's, right? Anyway, was only 1.13 at 34

weeks. He's been in 0-3 since 6 months. He has OT, ST, etc. He had a gtube

placed at 17 mos. and seems to be doing well from it. We haven't crossed into

periactin yet, but know we will at some point. clocked in last week at

29 mos., 18 lbs., 30 " . He's had an undes. teste/hernia corrected, ear tubes

placed, and is considered deaf and just got an implant to help with that. He's

got scoliosis that we monitor closely, but no assemetry. Overall, given all his

medical issues, he's a very happy, healthy little boy. He hasn't got a clue he

can't hear and how little he is just yet. His triplet brother is over 40lbs.

and his sister is well over 30 lbs.

is classified as " failure to thrive " and wasn't doing well on his own.

The gtube for us was definately the right move. He gets 16 oz. during the night

of Pediasure and 2 bolus feeds during the day (4 oz. each). We do allow him to

eat, and he will nibble a bit, but I relie 100% on formula for now for his

primary source of nutrition.

Anyway, glad to have you on board. Feel free to email privately if you wish for

additional info.

Cheryl

Mom to , , and - 29 Months -- my babies are getting so old

Debra Codd wrote:

> hello,

> my name is debbie codd. my son is ellis, his twin brother is elliot and

younger sister is gwyneth. ellis is five, as of june. he is 24lbs. and 37 1/2 "

tall. his bone age is a year to a half a year less. we aren't using growth

hormone, he doesn't have a g-tube, he isn't on any drugs. he was born 1lb 14oz,

via c-section at 36 weeks, in boston. (his brother was 5 lb. 5 oz.) he was in

intervention services when he was 6 mos. old, then speech and physical therapy

in nursery school when he was three. and for his pre-kindergarten eval. they've

said he's up to his age in both areas. he has no assymetry, but has all typical

physical charac., as well as undecended testes, which were operated on at age 3.

his growth and weight gain have never flattened out. gains have been small and

slow but he continues on an upward curve. we have some cognetive questions,

which i think will become clearer to us when he enters school. he wasn't

diagnosed until he was 3 1/2 years old.

>

> that's ellis in a nutshell.

> i have some questions for everyone.

>

> we attended the potluck in holliston, and i was amazed to see and hear that so

many children were on g-tube and/or periactine. i know that my son was born the

same size as everyone and continues to follow a similar path, but not once has

anyone ever suggested a g-tube or drugs. so i came away from the potluck kind

of confused. am i doing enough for ellis? were the kids that are using these

things all " failure to thrive " ? what's the criteria for this stuff? i guess

i'm mostly concerned that my doctors never mentioned anything, however they've

always said that his upward gains were poitive and that if he'd started loosing,

then they'd do something. is that the main reason behind these interventions,

to stop backwards movement in the area of growth? i don't want anyone to think

i'm knocking their choices, but i need to know that i'm also making the right

ones for ellis.

>

> his appetite changes. i also found that he ate well during a vacation, and

that seemed to be due to the availability of food. he grazed, but still ate

well during his meals. i tend not to leave food out at home because i will eat

it or his little sister will. actually, i'm considering setting up a snack

station, that he can get to but not his sister, to see how that would go for

him.

>

> we've tried all the shakes and mixtures and found that if he didn't throw it

up because it was too heavy on his stomach, he wouldn't eat his meals. so

basically, he eats with the rest of us. i try to give him the high fat during

regular meals. if only he wouldn't stare so much during the meal. the other

kids have to be tired of hearing, " ellis, wake up. "

>

> sorry this is long, but since it's my first e-mail i thought i'd put it all

out there. please let me know your reasons behind g-tubes, etc., so i can talk

to his nutritionist and endo with more info.

>

> thanks for " listening " ,

> debbie

>

> ________________________________________________________________

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[Guest guest]

Hi Mini,

A lot of people have encountered this problem and others will in a better

position to comment. I have a five year old who has had a G tube for two

years. She did not shut down oral foods with the Gtube but she did cut down.

I know there are other who experienced a complete shut down and they did

certain therapies to keep their child 'orally stimulated' with not only food

but specific techniques.

In general our attitude is we use the pump to get calories and solid

foods as a supplement. We emphasize the social behavioral aspects of sitting

at the table, waiting for others to finish, we sit for three meals a day and

there are times and places to snack( this makes us sound kind of rigid but

were not) etc. I guess what I'm saying is we do not force her to eat but she

does need to know how to eat. Meal and snack times are times to enjoy. The

hope is that as she gets older and understands that she has to eat to be

healthy she will have the basics down. We are currently working on not

disecting food before eating. I hope this makes a little sense.

To my friends,

Peace and Prayers

Mark dad to 5, G-tube