Question about endocrinologist

[Guest guest]

Hi all,

I tried to get Amita referred to a endocrinologist by her

pediatrician but was refused. Even though she is not even on the

charts below 0 percentile (I think head size) they said that she is

following the curve in terms of height(< 5%) and head size etc.. Now

my problem is that Amita is small, I and Krish are small too but..,

she looks like a 8-10 month old whereas she is almost 18 mos. now.

This I am saying by comparing her to kids of her age and whose

parents are about our sizes. Reading about the growth hormone

deficiency of charge kids, obviously, was what started me off. My

question is Am I making too much of this at this stage? (Confusion

due to being blown off by ped.). How young can they be tested for GH?

Do I need to get aggressive about this?

Deepta

Mom to Amita (17 mos.)

Dallas, Tx.

[Guest guest]

Deepta,

Kennedy sees an endocrinologist and she is in the 25% in weight and the 5th for

height and the 20th for her head. It's precautionary that we are followed by

her at this point, although we did have the bone age test done (wrist xray) and

Kennedy's showed that her bone development was 2 levels lower than it should've

been. That's how the original referral was made. Has Amita ever had her bone

age test done? You might request that from your doctor and things might move

along that way if he sees something in front of him that might be a cause for

further checking.

So far, her blood work has tested okay endocrinology-wise, but her endo wants to

check her weight/height, etc every 3 months for a year just to be sure.

It never hurts to be safe!

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Question about endocrinologist

Hi all,

I tried to get Amita referred to a endocrinologist by her

pediatrician but was refused. Even though she is not even on the

charts below 0 percentile (I think head size) they said that she is

following the curve in terms of height(< 5%) and head size etc.. Now

my problem is that Amita is small, I and Krish are small too but..,

she looks like a 8-10 month old whereas she is almost 18 mos. now.

This I am saying by comparing her to kids of her age and whose

parents are about our sizes. Reading about the growth hormone

deficiency of charge kids, obviously, was what started me off. My

question is Am I making too much of this at this stage? (Confusion

due to being blown off by ped.). How young can they be tested for GH?

Do I need to get aggressive about this?

Deepta

Mom to Amita (17 mos.)

Dallas, Tx.

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For information about the CHARGE Syndrome

Foundation or to become a member please

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[Guest guest]

Hi Barbara,

As the Mum to an almost 16 year old chARgE boy (Larry) I will tell you about

our experiences. Larry was almost 9lb born a big beefy boy (although he did

look 12 lb when he was first born and I am guessing that was due to fluid)

He did the usual CHARGE thing and grew till 6 months then didn't grow again

until 12 months. So he went from being big for his age to being tiny, Larry

was not diagnosed until he was nearly 5 years old, so we where not told why

he didn't grow. I breastfed Larry until he was 20 months old to help with

his facial palsy, he always fed very well and at 6 months I started him on

solids which he loved. His health was excellent our only battle being his

unilateral Choanal Atresia resulting in him waking every hour at night

because he could not breath, he also had antibiotics occasionally for nasal

infections. I have read of other Charge parents saying that the reason the

Charger kids don't grow must be because of them not getting enough nutrition

and dealing with major health problems constantly, in Larry's case this was

not so and yet he still did not grow for 6 months .

When Larry was finally given hearing aids at 2 and a half years old the

Audiologist pointed out that I had made a mistake writing his date of birth

down (as if) she though he was 18 months old, he was such a tiny little

thing. When he was at Pre School he was so tiny he looked like a toddler

and when he went to school he was always the smallest. Larry has never seen

an endocrinologist, no one ever suggested it and when I found out he didn't

seem to need one he has nothing wrong with his genitals. He was fairly late

hitting puberty though most of his bits have gone through their

transformation and he is nearing his 17th birthday he is still not close to

shaving yet and he is now taller than me, I think he now measures about 5'6'

and he is still growing (I didn't think he would ever make 5', so I am

pleasantly surprised) We have some fairly tall people in our family and at

5'5' I am the shortest. My guess now is that Larry will probably reach 5'7 "

or 5'8 " .

Jan Hewitson Mum to Larry 16

Perth West Australia

Re: Question about endocrinologist

> Deepta, children can be tested for GH at any age. However, most Charge

> children are small, and if following the growth curve( as did also),

> even below it, means they usually have some GH. I worry about being

> aguy, that he will end up 4' tall or something! But my doc thinks they

will

> just keep growing longer than the typical child, and may catch up.

Parents

> of teens/older: how are your Charger's heights? Thanks, Barbra

>

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> Foundation or to become a member please

> contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

[Guest guest]

Jan,

Aari is a lot like Larry.. 7.5 lbs at birth, 5.5 lbs when we took him

home a month later.. 12 lbs on his first birthday and so on.. at 8

he's 43 inches tall and on a good day weighs 41 pounds.. the size

of an average 4.5-5 yo.. It's not nutritian with him either.. he's on a

3000 cal a day diet (3 meals, snacks and 3-5 cans of Ensure a

day), He's on a growth curve.. his own.. under the 3rd percentile..

but other things as far a GHD are showing up.. same size shoe as

a year and a half ago.. REALLY bad tooth enamal, uncoordination,

not a whole heck of a lot of stamina.. he also produces no

testosterone.. when testosterone stress tests were done he did

something our endo said she'd never seen before.. actually tested

with less testosterone after the 4 days of HCG... they ran the test

three times at three different ages becasue they figured it was a lab

listake but all came out the same.

Casey

Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

[Guest guest]

My daughter Hillary is going to be 9 yrs. Old in June, she is the size of a

5 yr. Old. I really notice this because her sister will be 10 yrs. Old 3

days after she turns 9. (Yes, my girls are 3 days short of a year apart).

So I really see the difference. We have done no GH testing. Just wondering

if maybe I should think about it.

Question about endocrinologist

Hi all,

I tried to get Amita referred to a endocrinologist by her

pediatrician but was refused. Even though she is not even on the

charts below 0 percentile (I think head size) they said that she is

following the curve in terms of height(< 5%) and head size etc.. Now

my problem is that Amita is small, I and Krish are small too but..,

she looks like a 8-10 month old whereas she is almost 18 mos. now.

This I am saying by comparing her to kids of her age and whose

parents are about our sizes. Reading about the growth hormone

deficiency of charge kids, obviously, was what started me off. My

question is Am I making too much of this at this stage? (Confusion

due to being blown off by ped.). How young can they be tested for

GH?

Do I need to get aggressive about this?

Deepta

Mom to Amita (17 mos.)

Dallas, Tx.

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For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

You might want to be tested for thyroid problems. My daughter has a

underactive thyroid and is on Synthroid. Theres a blood test they can do to

check for this.

Tia, mom to age 11

[Guest guest]

Hi Deepta,

Jack first started seeing his endocrinologist when he was 8 mths old and has

seen her every 6 mths since then. He is very small in both height and weight

although he was normal height/weight at birth. He has only had a basic GH

test and it came back very low. They tested his IGF1 levels. However as he

has actually grown almost 5 cms since last September they are leaving him

another 6 mths-1yr to see how things progress. He had a gastrostomy last June

and they think that he may just be playing catch up at the moment and that

his height will start to fall off again.

I remeber his endo saying that they wouldn't test for GH before the age of

2-3 as you do not get accurate results before then. Maybe this is just a

British thing?

Jack also had his bone age tested and he is delayed . When he was 19mths his

bone age was 10-12mths.

I would ask again to have her referred .

Hope this helps.

Elaine mum to Elise (7yrs) & Jack(2.5yrs) CHaRGE

Dumfries,Scotland

[Guest guest]

Barbara, and all those into the growth hormone thing,'Our daughter was on

growth hormone for seven years, off for one year to see if she grew on her

own , no lucj back one for one year now off all thogether,She didnet have

any normal growth hormone but he synthetic one didnt help either, She is now

17years and on Hormone Replacement Therapy to help prevent osteoporosis &

puberty,(no ovaries) but she is growing slighty with this, her

endocronologist expects her to grow to app 4ft 9. she is currently the size

of a ten year old but bone age is app 12years so lots of room for growth,

her weight is app a 10 year old. Good things come in small parcels.

has a lot of growing up to do but we are just grtful for what she has. It

isnt easy even at this age but we will cope with lots of help from the

support group and family.Just this year we have started her in to respite

for the weekend she loves it and it has done wonders for us.All good things

cone to them taht wait. so even with the feeding issues be patient, wa

stube fed until 2 1/2 and even now lots of things she avoids like meat she

has to chew.

It is really great to be able to pass on some of our experiences with an

older cHARGER.

Marie mom to 17rs(cHARGE)

>From: MOMOUSE495@...

>Reply-To: CHARGEegroups

>To: CHARGEegroups

>Subject: Re: Question about endocrinologist

>Date: Thu, 20 Apr 2000 20:13:50 EDT

>

>Deepta, children can be tested for GH at any age. However, most Charge

>children are small, and if following the growth curve( as did also),

>even below it, means they usually have some GH. I worry about being

>aguy, that he will end up 4' tall or something! But my doc thinks they

>will

>just keep growing longer than the typical child, and may catch up. Parents

>of teens/older: how are your Charger's heights? Thanks, Barbra

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