Re: any ideas?

[Guest guest]

Hi mjmjm,

I sure hope you have a differnet name because this one is hard to

type.

I am not sure what your geneticist(s) meant about your son's weight.

If they meant it was too high, then my son would not be diagnosed as

RSS because he weighed more at birth than your son. I don't think

that they meant your son's weight was too low because there are many

on this list whose children had much lower birth weights. So, I don't

think they were right. You might want to checek with yet another

genticist.

Also, you did not mention if you have seen a pediatric

endocrinologist. Maybe you did and I missed it. You might also try

and get an appointment with a ped. endo. and skip the geneticists.

Where do you live? Maybe one of us is close to you and we can

recommend a doctor fairly close by.

What is the calories per ounce of the pediasure you are giving him?

If you can, try and get a higher calorie formula. Can you add a small

amout butter to his soft food? Maybe talk to a nutritionist about

adding polycose to his formula or food.

I hope this helps.

Ken M

>

> My son was born at 27 weeks. He weighed 4lbs 10 oz. Spent a month

in

> the nicu. Has only gain 1/2 pound a month his whole life. He is 18

> months old and weighs 12 lbs. I have been to 2 geneticists,

> nerologist, pulminologist, and a GI doctor. He eats like crazy. Can

> eat 6 cans of Pediasure a day and soft baby food. No one has a

> diagnosis. He has so many of the characteristics of rss.When I see

> the pictures it looks like my son. Genetisist said no because of

his

> weight at birth. Does anyone think this is right. Any ideas of what

> type of doctor to go next? Has anyone had the same problems?? Thanks

[Guest guest]

My son Max was born full term at 6lbs. 3oz. And he is a prime

example of RSS. Birth weight alone does not determine or outrule

RSS.

Jodi Z

[Guest guest]

Hi,

My daughter is an " eater " and is diagnosed Small for Gestational Age

(SGA) and possible mild RSS. The best thing we ever did was bring

her to the convention in Chicago last year (www.magicfoundation.org

has this year's info - July - Chicago) to see Dr. H and meet with all

the other parents. WORTH the trip and the expense. Even though I

used to consider (pre this board) my daughter an eater she really

isn't when I compare her to " normal " kids. She is smart ( too smart

for her own good !!!!) and quite verbal for a 2 year old so she is

doing great in all other areas. We actually think we are going to

phase her out of Physical therapy in May since she has mastered

(finally) all age appropriate skills except those that are affected

by height (ie stair climbing).

, mom to 5 and Emerence 2, SGA, poss Rss 31 " 20lb 11 oz

>

> My son was born at 27 weeks. He weighed 4lbs 10 oz. Spent a month

in

> the nicu. Has only gain 1/2 pound a month his whole life. He is 18

> months old and weighs 12 lbs. I have been to 2 geneticists,

> nerologist, pulminologist, and a GI doctor. He eats like crazy. Can

> eat 6 cans of Pediasure a day and soft baby food. No one has a

> diagnosis. He has so many of the characteristics of rss.When I see

> the pictures it looks like my son. Genetisist said no because of

his

> weight at birth. Does anyone think this is right. Any ideas of what

> type of doctor to go next? Has anyone had the same problems?? Thanks

[Guest guest]

Hi! Welcome to the listserve. I agree with what everyone else

wrote, that normal birth size does not rule out an RSS diagnosis.

4lbs 10 oz at 27 weeks. Is that correct? Most 27 weekers are down

in the 1lb range. Are they positive about the gestational age? Did

they ever rule out gestational diabetes for you (which may account

for his large birth weight for his gestational age).

Almost all RSS babies that are born at normal birth weights (meaning

anything above 5lbs 2 oz for full-term 40 weeks) (see, your son was

only 8 ounces under the curve and yet he was 13 weeks premature --

that is truly a miracle for you!). Anyway, almost all these " normal

weight " RSS kids have siblings that have had birth weights far

exceeding theirs. For example, 6lb 1 oz Joey might have an 8lb

sister and a 9lb brother. What appears is that the RSS baby is

still IUGR compared to what they should have been. Does that make

sense?

So maybe your son should have been born fullterm a 10lb baby!

(ouch).

The two geneticists you saw - were they at Children's Hospitals?

Re an RSS diagnosis, does your son have at least 4 of these 5

characteristics? (please read a prior posting I made a couple days

ago describing how to determine these features)

Triangular shaped face (this is from the top of the skull to the

chin)

Bossed/large forehead

Posteriorly rotated ears and possibly low set; often sticking out

Curving of the 5th finger and/or short 5th finger and/or 2 creases

on 5th finger versus normal 3

Head circumference percentile far exceeds the weight and height

percentile

Approximately 85-90% of RSS children have 4-5 of these primary

characteristics. Another 50% have limb asymmetry as well. Then

there is a whole host of other features that range from 15-65% or so

in incidence rates -- but all of those are also found in other

disorders as well.

I hope this helps explain the features a bit. One of the posters is

correct -- when in doubt, come to Chicago to the MAGIC convention

and see Dr. Harbison who will give you some kind of answer (may not

always be the one we want to hear, but she shoots straight). (I am

guessing there are more than a handful of heads nodding on that last

comment! )

Meanwhile, read and read here, and hopefully you'll someday get an

answer. We'll all help in whatever way we can. I am guessing your

son has had celiac disases, allergies, malabsorption and CF ruled

out by the GI doctor? Jenn

>

> My son was born at 27 weeks. He weighed 4lbs 10 oz. Spent a month

in

> the nicu. Has only gain 1/2 pound a month his whole life. He is 18

> months old and weighs 12 lbs. I have been to 2 geneticists,

> nerologist, pulminologist, and a GI doctor. He eats like crazy.

Can

> eat 6 cans of Pediasure a day and soft baby food. No one has a

> diagnosis. He has so many of the characteristics of rss.When I see

> the pictures it looks like my son. Genetisist said no because of

his

> weight at birth. Does anyone think this is right. Any ideas of

what

> type of doctor to go next? Has anyone had the same problems??

Thanks

[Guest guest]

my son was born at 36 weeks, planned c-section i had a previous c-

section and was told he would be 8 1/2lbs so i decided to just do

the c-section again. well he was 5lbs 10oz and 18 1/2 " !!! a far

cry from 8 1/2lbs!! my first son was 9lbs 4oz and my third son was

8lbs 6oz so you can see there is a big difference even though

christopher wasnt extremely small. hope this helps.

jodie c

[Guest guest]

Hi!

Welcome to our group! My son was born by emergency c-section (he was

breech) 39 weeks and he weighed 4 lbs 12 oz and was 15 " long. I

gained 52 lbs with my pregnancy and the OB predicted and 8 lb

baby..they told me to stop eating so much or he would be Huge!! Well

he showed them! He spent 2 weeks in the NICU and the neonatologist

made us see a genetic specialist because he thought Isaac had

achondroplasia..the geneticist said he was either SGA or RSS but

wanted to see him in 6 mos. I started reading everything I could get

my hands on and that is how I found this list and MAGIC..it has been

a true lifesaver! We went to convention last year and Dr. H confirmed

the RSS diagnosis. If you can go to convention..I highly suggest

it..it was wonderful! My husband didn't want to believe that his son

was going to be " short stature " he kept denying it everytime I

brought it up. Once he saw the other kids there he said there was no

doubt that Isaac had RSS. He saw other kids who looked and

acted " normal " it was a major relief for him (and me)! Once

the " mystery " of the unknown was removed he was fine!

Good Luck..

Mimi mom to: Isaac (14 mos 14 lbs, 25 5/8 " at weight check in early

March RSS, Hypothyroid, Zantac, Sinthroid, Periactin ) Baby#2 (due 9-

27-05)

[Guest guest]

Hi there,

Are you sure your son weighed that much at 27 weeks gestation?? That

is enormous for a 27 week infant. And if he was discharged after a

month that would have made him only at 31 weeks gestation. I've

NEVER seen a 31 weeker discharged from a NICU as they are usually

needing an isolette and tube feeds at that time as a minimum. Could

he have been 37 weeks at birth??

>

> My son was born at 27 weeks. He weighed 4lbs 10 oz. Spent a month

in

> the nicu. Has only gain 1/2 pound a month his whole life. He is 18

> months old and weighs 12 lbs. I have been to 2 geneticists,

> nerologist, pulminologist, and a GI doctor. He eats like crazy.

Can

> eat 6 cans of Pediasure a day and soft baby food. No one has a

> diagnosis. He has so many of the characteristics of rss.When I see

> the pictures it looks like my son. Genetisist said no because of

his

> weight at birth. Does anyone think this is right. Any ideas of

what

> type of doctor to go next? Has anyone had the same problems??

Thanks

[Guest guest]

Hi Brigitte,

I think the majority of our kids deal with constipation on a regular

basis. Olivia had a terrible go at it for years and wound up with

functional Mega Colon. On her own she will go 10 days between BM's

and have huge fissures when she finally went.

The goal is to have one or two BM's a day. When we finally got the

problem sorted out with her GI she was on a very strict routine. If

she didn't poop in 24 hrs. it was an automatic suppository. If she

still didn't poop by 36 hrs. it was an automatic enemma.

I'd be careful with the Senna Syrup, although it's natural it's

still a stimulant and you don't want to make her bowel dependant on

it. That could be part of the cause of her still vomiting if the

Senna is making her cramp up a bit.

Olivia's on 1 tablespoon of lactulose, 3 times daily, but we play

with the dosage all the time to make sure she doesn't get constipated

or too loose. Every child is different as per dosing but we have to

play with it a lot so that her BM's are about the consistency of

toothpaste making sure that it's never harder than that.

In the U.S. the med of choice is Miralax. It's not available to us

here in Canada and I'm not sure if it's available in the U.K. but it

might be worth it to ask since I know the parents here just love it

and have great results with it.

Hope this helps some,

Leah, mom to 10yrs and Olivia 5.5yrs, 22lbs, 35 " , RSS, OI

> Hi Everyone

> Bobbi suffered with constipation (badly) and for the last 6-8 weeks

> has been taking Senna Syrup and lactoulose, which has sorted the

> problem, she is vomiting/coughing less,but we have now noticed that

> she is very fragile and coughs alot sometimes sick a few hours

before

> a BM, and I was wondering if it is just expected with RSS or there

> maybe another underlying problem. once she has had a BM she is fine

> and eats better too.

>

> Brigitte (mum to Bobbi 14 months 12.5lb 26.5 " )

[Guest guest]

Hi, Mirilax has been the best thing for Dalia and it seems to be very

mild as long as the dosage is correct. I actually cut the dosage in

half myself because that is all it takes to make her go every day.

Sheryl

> Hi Everyone

> Bobbi suffered with constipation (badly) and for the last 6-8 weeks

> has been taking Senna Syrup and lactoulose, which has sorted the

> problem, she is vomiting/coughing less,but we have now noticed that

> she is very fragile and coughs alot sometimes sick a few hours

before

> a BM, and I was wondering if it is just expected with RSS or there

> maybe another underlying problem. once she has had a BM she is fine

> and eats better too.

>

> Brigitte (mum to Bobbi 14 months 12.5lb 26.5 " )

[Guest guest]

And that is the one thing that has been stressed for . The need to go

every day! Dr H would rather he have a couple of BMs daily then go every

other day.

I don't know if Mirilax is available in the UK, but it works really well for

, as long as he gets it every day, AND he's getting plenty of fluids!

Although, Dr H recommended that we place it in his formula bag each night,

and let the dosage run over night, and THAT didn't work for . Now we

just bolus the entire dose in with his nighttime meds.

Pat (g-ma to , RSS, 3 yrs 5 months old, 23#, 33 " , G-tube, GHT)