Re: RSS possible for daughter

May 27, 2004

,

Check out the web site magicfoundation.org , you can check out a

detailed description of RSS. Sounds like your daughter shares some of

the more common traits of RSS. If it is determined that she has RSS

you may as well bookmark this groups URL because it is THE place you

want to be. Best wishes in your search. Andy

> Hello everyone,

>

> I am new here and our 15 mo old may possibly have RSS. She has seen

> a geneticist who never mentioned RSS to me but did in the letter she

> sent to my pediatrician as a possibility (got the copy today). She

> also has seen an endocrinologist and her electrolytes were a bit off

> for CO2 and still waiting for one of the growth hormone results.

>

> She was IUGR (among many other worries brought to our attention by

> the level 2 ultrasound specialist - including possible dwarfism which

> appears RSS may be?) and born at 37 wks. 4lb 6oz, 16.25 inches. She

> has hypotonia (low muscle tone), has trouble eating (but eats), a big

> forehead and small mouth, crowded teeth, and turned in 5th finger.

>

> I've been online for 2 hours and it seems that each case presents

> differently. I am going to talk to the pediatrician tomorrow but any

> suggestions? Did anyone else have similar symptoms presented?

>

> I apologize jumping in prematurely as this is still a maybe.

>

> I hope all your kids are doing well and would appreciate any advice.

>

> Thanks!

>

May 27, 2004

- your letter could have been written by me 6 1/2 years

ago!!!! We also got a letter from the geneticist, which he " cc'ed "

to our pediatrician but in the letter to the pediatrician he added a

line about thinking it was RSS. Sadly, the peds thought we had the

same letter and calls me saying " hey, so he thinks it is RSS " and I

am thinking HUH?????

Our daughter was born at 38 1/2 weeks at 5lb 2oz and 17 " long. IUGR

in pregnancy.

Make sure to read the information on www.magicfoundation.org.

Also, how close to CHicago are you? We have this incredible medical

convention every year, July 22-25th this year. There are two peds

endos that are considered " experts " on RSS/SGA kids, one in the US

and one in England, and they both are coming to the convention. Dr.

Madeleine Harbison, from NYC, also provides free consultations to

families from Tuesday - Saturday night, every day of the

convention. You will get a straight answer from her no matter

what!!! She has 130+ current RSS patients and many other SGA

patients in her caseload in New York.

There are presentations all day long on Friday & Saturday about

anything and everything you would need to know about RSS/SGA

(regardless if she has RSS, she is IUGR/SGA and there are issues

with that you should be aware of). Plus we have a TON of fun --

last year we had 120 families with RSS/SGA kids, and the kids and

siblings have a blast, we swim, big dinners and parties at night.

Lots of fun.

We have scholarships that will cover hotel and registration for

families that need assistance. You can email me privately for more

information (magicrss@ mindspring.com) or post it here.

Salem (, age 8 1/2, on growth hormone, Periactin,

Zantac, Prevacid & Miralax, now about 52 " tall at 65%'tile and 54

pounds, 25th percentile)

> Hello everyone,

>

> I am new here and our 15 mo old may possibly have RSS. She has

seen

> a geneticist who never mentioned RSS to me but did in the letter

she

> sent to my pediatrician as a possibility (got the copy today).

She

> also has seen an endocrinologist and her electrolytes were a bit

off

> for CO2 and still waiting for one of the growth hormone results.

>

> She was IUGR (among many other worries brought to our attention by

> the level 2 ultrasound specialist - including possible dwarfism

which

> appears RSS may be?) and born at 37 wks. 4lb 6oz, 16.25 inches.

She

> has hypotonia (low muscle tone), has trouble eating (but eats), a

big

> forehead and small mouth, crowded teeth, and turned in 5th finger.

>

> I've been online for 2 hours and it seems that each case presents

> differently. I am going to talk to the pediatrician tomorrow but

any

> suggestions? Did anyone else have similar symptoms presented?

>

> I apologize jumping in prematurely as this is still a maybe.

>

> I hope all your kids are doing well and would appreciate any

advice.

>

> Thanks!

>

May 27, 2004

hi megan!!

welcome to this wonderful group!! you will get all kinds of support

and info from this wonderful RSS/SGA " family " !!

as far as the characteristics go it sounds like she has alot of

them. my son christopher is 3 has the small mouth, fith finger

curve, assmentry, broad forehead, eats but not well (now on periacin

and eating much better). did you go to magic's website? they can

send you a broucher with all the characteristics listed and if you

become a member there is loads of other info they will send you (if

you request it) free of charge, plus a convention that you can go to

to meet other family's and learn more about rss. where are you guys

from? feel free to email me at jlcals2003@ yahoo.com (no space after

@). good luck!!

jodie (one of many on here)

(nicholas-6 nonrss, christopher-3 rss 23lbs 8.5oz 33 " periactin, ght

genotropin (on hold until july), ADHD (possible), johnathon-11m

nonrss)

May 27, 2004

Hi ,

Your daughter was 1oz bigger and 0.25inces longer than my daughter

Jillian was at birth. I was also clued in to her " smallness " issue

on the ultrasounds prenatally.

2 things I want to alert you to irregardless of whether or not she

is RSS or SGA (small for gestational age). It is great she is

feeding by mouth but make sure she is getting enough to not be

hypoglycemic (low blood sugar). This is usually acchieved by

frequent feeds including a few night time feeds. RSS or SGA babies

are usually " good babies " in that they will sleep through the night

and not wake up for food. Does she ever get sweaty or tremble

slightly? Discuss the possibility of hypoglycemia with her

pediatrician. Also, you said her CO2 was a " bit off " . Unfortunately

that tidbit of information given to you by a healthcare professional

is useless to say the least. A few points over or under ideal values

is usually nothing to be concerned about. But high or low CO2's can

mean many, many different things. You need to find out what her CO2

means for her when read with the rest of her labwork. A single value

plucked out of a panel of electrolytes is worthless. Her

pediatrician should be able to explain what everything means

together and in such a way you understand (or at least begin to)

what may be going on, and, either assure you that everything is fine

or, what he/she is going to do about the problem.

Best wishes,

> Hello everyone,

>

> I am new here and our 15 mo old may possibly have RSS. She has

seen

> a geneticist who never mentioned RSS to me but did in the letter

she

> sent to my pediatrician as a possibility (got the copy today).

She

> also has seen an endocrinologist and her electrolytes were a bit

off

> for CO2 and still waiting for one of the growth hormone results.

>

> She was IUGR (among many other worries brought to our attention by

> the level 2 ultrasound specialist - including possible dwarfism

which

> appears RSS may be?) and born at 37 wks. 4lb 6oz, 16.25 inches.

She

> has hypotonia (low muscle tone), has trouble eating (but eats), a

big

> forehead and small mouth, crowded teeth, and turned in 5th finger.

>

> I've been online for 2 hours and it seems that each case presents

> differently. I am going to talk to the pediatrician tomorrow but

any

> suggestions? Did anyone else have similar symptoms presented?

>

> I apologize jumping in prematurely as this is still a maybe.

>

> I hope all your kids are doing well and would appreciate any

advice.

>

> Thanks!

>

May 27, 2004

Hi,

Emerence doesn't seem to ever get sweaty or tremble. She eats a large smoothie

and a handful of cheerios for breakfast, oj with her am snack, meat and pasta

and veggies for lunch, afternoon smoothie, dinner, small snack and then sleeps.

Her weight seems more okay with everyone than her height. Her Co2 was 19 = I

guess the ave normal is 22-30. They want to retest in a month with a

urinalysis. Her pedi called this eve and said the drs. she has are excellent,

among the best and that she thinks they are doing the right thing by testing

everything out and that hopefully the test in a month will clear things up.

Everyone has been great here! In less than 24 hours I have gotten a lot of

help!

Re: RSS possible for daughter

Hi ,

Your daughter was 1oz bigger and 0.25inces longer than my daughter

Jillian was at birth. I was also clued in to her " smallness " issue

on the ultrasounds prenatally.

2 things I want to alert you to irregardless of whether or not she

is RSS or SGA (small for gestational age). It is great she is

feeding by mouth but make sure she is getting enough to not be

hypoglycemic (low blood sugar). This is usually acchieved by

frequent feeds including a few night time feeds. RSS or SGA babies

are usually " good babies " in that they will sleep through the night

and not wake up for food. Does she ever get sweaty or tremble

slightly? Discuss the possibility of hypoglycemia with her

pediatrician. Also, you said her CO2 was a " bit off " . Unfortunately

that tidbit of information given to you by a healthcare professional

is useless to say the least. A few points over or under ideal values

is usually nothing to be concerned about. But high or low CO2's can

mean many, many different things. You need to find out what her CO2

means for her when read with the rest of her labwork. A single value

plucked out of a panel of electrolytes is worthless. Her

pediatrician should be able to explain what everything means

together and in such a way you understand (or at least begin to)

what may be going on, and, either assure you that everything is fine

or, what he/she is going to do about the problem.

Best wishes,

> Hello everyone,

>

> I am new here and our 15 mo old may possibly have RSS. She has

seen

> a geneticist who never mentioned RSS to me but did in the letter

she

> sent to my pediatrician as a possibility (got the copy today).

She

> also has seen an endocrinologist and her electrolytes were a bit

off

> for CO2 and still waiting for one of the growth hormone results.

>

> She was IUGR (among many other worries brought to our attention by

> the level 2 ultrasound specialist - including possible dwarfism

which

> appears RSS may be?) and born at 37 wks. 4lb 6oz, 16.25 inches.

She

> has hypotonia (low muscle tone), has trouble eating (but eats), a

big

> forehead and small mouth, crowded teeth, and turned in 5th finger.

>

> I've been online for 2 hours and it seems that each case presents

> differently. I am going to talk to the pediatrician tomorrow but

any

> suggestions? Did anyone else have similar symptoms presented?

>

> I apologize jumping in prematurely as this is still a maybe.

>

> I hope all your kids are doing well and would appreciate any

advice.

>

> Thanks!

>

May 27, 2004

Hi,

Thanks for the response. The response has been rather overwhelming. I am just

going to take it one day at time and try and figure this out with all the drs.

involved. Hopefully they will start to figure this out soon?