Re: introduction - one other thing to Chantel

[Guest guest]

Chantel - I should have said GENETICIST is who you should bring your

child to for the initial consultation, not a pediatric

endocrinologist. A pediatric endocrinologist usually only worries

about height, and in a situation where more is being affected, it

may be best to start with a geneticist. Jenn

> > Hello. My name is Chantel. I am the mom of 3 and I found this

group

> > this morning. I am looking for some help for my son as my Dr.

is not

> > concerned about his. He is 17 months old and only weighs 20

lbs. He

> > is 30 1/4 in tall. He is below all the growth curves, except

for his

> > head. It is in the 90th percentil for his age. My other

children

> are

> > average sized and so are my husband and myself. Why isn't my Dr.

> > concerned? Where do I begin to start finding out what is going

on

> > with my son? He eats when he wants to, he is not a big eater,

but he

> > eats fairly well. I try to feed him high calorie food too, but

> > nothing is helping. He refuses the pedisure I try to give him.

I

> > don't know anything about RSS, and he probably doesn't have the

> > syndrome, but I figured you all are experienced with growth

issues

> and

> > you can lead me in the right direction. Thank you!

> >

> > Chantel

[Guest guest]

Yes, our geneticist was so helpful. When I pointed out the asymmetry and

it finally tipped the scales for Tim's diagnosis, she educated the other

docs. His other specialists were assuming he needed calories his body

couldn't use before the growth hormone. He still needed more than other

kids, but at the number of cals he had going through his ng tube, he would

vomit the previous meal when we tried to put a nipple in his mouth for the

next one - and I mean tons of it, too!

Inga

At 07:42 PM 9/30/2005 +0000, you wrote:

>Chantel - I should have said GENETICIST is who you should bring your

>child to for the initial consultation, not a pediatric

>endocrinologist. A pediatric endocrinologist usually only worries

>about height, and in a situation where more is being affected, it

>may be best to start with a geneticist. Jenn

>

>

>> > Hello. My name is Chantel. I am the mom of 3 and I found this

>group

>> > this morning. I am looking for some help for my son as my Dr.

>is not

>> > concerned about his. He is 17 months old and only weighs 20

>lbs. He

>> > is 30 1/4 in tall. He is below all the growth curves, except

>for his

>> > head. It is in the 90th percentil for his age. My other

>children

>> are

>> > average sized and so are my husband and myself. Why isn't my Dr.

>> > concerned? Where do I begin to start finding out what is going

>on

>> > with my son? He eats when he wants to, he is not a big eater,

>but he

>> > eats fairly well. I try to feed him high calorie food too, but

>> > nothing is helping. He refuses the pedisure I try to give him.

>I

>> > don't know anything about RSS, and he probably doesn't have the

>> > syndrome, but I figured you all are experienced with growth

>issues

>> and

>> > you can lead me in the right direction. Thank you!

>> >

>> > Chantel

>

>

>

>

>

>

>

[Guest guest]

You are all talking about differences in limbs too. Is it a real noticeable

difference? Should I notice right away by looking at him, or is it something I

should get a tape and measure?

Re: Re: introduction - one other thing to Chantel

Yes, our geneticist was so helpful. When I pointed out the asymmetry and

it finally tipped the scales for Tim's diagnosis, she educated the other

docs. His other specialists were assuming he needed calories his body

couldn't use before the growth hormone. He still needed more than other

kids, but at the number of cals he had going through his ng tube, he would

vomit the previous meal when we tried to put a nipple in his mouth for the

next one - and I mean tons of it, too!

Inga

At 07:42 PM 9/30/2005 +0000, you wrote:

>Chantel - I should have said GENETICIST is who you should bring your

>child to for the initial consultation, not a pediatric

>endocrinologist. A pediatric endocrinologist usually only worries

>about height, and in a situation where more is being affected, it

>may be best to start with a geneticist. Jenn

>

>

>> > Hello. My name is Chantel. I am the mom of 3 and I found this

>group

>> > this morning. I am looking for some help for my son as my Dr.

>is not

>> > concerned about his. He is 17 months old and only weighs 20

>lbs. He

>> > is 30 1/4 in tall. He is below all the growth curves, except

>for his

>> > head. It is in the 90th percentil for his age. My other

>children

>> are

>> > average sized and so are my husband and myself. Why isn't my Dr.

>> > concerned? Where do I begin to start finding out what is going

>on

>> > with my son? He eats when he wants to, he is not a big eater,

>but he

>> > eats fairly well. I try to feed him high calorie food too, but

>> > nothing is helping. He refuses the pedisure I try to give him.

>I

>> > don't know anything about RSS, and he probably doesn't have the

>> > syndrome, but I figured you all are experienced with growth

>issues

>> and

>> > you can lead me in the right direction. Thank you!

>> >

>> > Chantel

>

>

>

>

>

>

>

[Guest guest]

hi chantel!!

christopher's is very slight only 1cm and his hand being smaller and

the thickness difference you wouldnt notice unless i pointed it out

to you. my dr picked it up when he was 2 months old and only

because we were there on a mon for a weight check and he measured

19 " and then when went 2 days later for his 2month well visit

he " shrunk " by a 1/2 " she then looked back at all of his

measurements for the last 2 months and there was alot because we

were going there 2x a week for weight checks and saw that everytime

we came there was a different measurement which was ooff by a 1/2 "

here it was depending on which leg they were straightening out for

the measurement!! so she checked herself and noticed the left leg

was 1/2 " shorter then the right!!

jodie c

> You are all talking about differences in limbs too. Is it a real

noticeable difference? Should I notice right away by looking at

him, or is it something I should get a tape and measure?

[Guest guest]

might be worth looking into!! lay him on the floor and straighten out

his legs, see if you notice a difference, look at the thickness of each

leg and the size of the feet. christopher left foot is 1/2 smaller

than his right. and he just started pt in school because he is

compensating for the difference by walking on the ball of his right

foot and fully extending his leg so now the muscles are getting ridged

in that leg. he also needs a lift on his left shoe for that same

reason.

jodie c

> Hmm, I wonder if this is why Caden waddles so much when he walks? We

always thought it was just something cute he does....

>

> Chantel

[Guest guest]

Hey Jodie,

Good thing to mention not just the length but the thickness as well. But with

thickness and not length also mean asymmetry? Even though Dr. H mentioned how

many characteristics has of RSS she says no (maybe I'll take yours and

Jodi's advice and Jenn Salem too and show her pictures of when she first

received diagnosis) but Dr. H did measure and her right thigh, calf, and

arm are thicker then the left side. Call me crazy but her hair is thicker on

the right as well. I can tell when I do pigtails. Even the hairdresser

noticied it.

B

Jodie wrote:

might be worth looking into!! lay him on the floor and straighten out

his legs, see if you notice a difference, look at the thickness of each

leg and the size of the feet. christopher left foot is 1/2 smaller

than his right. and he just started pt in school because he is

compensating for the difference by walking on the ball of his right

foot and fully extending his leg so now the muscles are getting ridged

in that leg. he also needs a lift on his left shoe for that same

reason.

jodie c

> Hmm, I wonder if this is why Caden waddles so much when he walks? We

always thought it was just something cute he does....

>

> Chantel

[Guest guest]

hey jennifer!!

when do you go back to dr h for those test results? i would

definitely show her ashelys pics from when she was younger!!

jodie c

> > Hmm, I wonder if this is why Caden waddles so much when he

walks? We

> always thought it was just something cute he does....

> >

> > Chantel

>

>

>

>

>

>

[Guest guest]

My next appt is December 28. I will show her the pictures but need the advice

of how to bring it up? You know her. If I say look at these pictures I'll get

that look like what for? I'm not comfortable with Dr. H yet. HELP

B

Jodie wrote:

hey jennifer!!

when do you go back to dr h for those test results? i would

definitely show her ashelys pics from when she was younger!!

jodie c

> > Hmm, I wonder if this is why Caden waddles so much when he

walks? We

> always thought it was just something cute he does....

> >

> > Chantel

>

>

>

>

>

>