Re: WEIGHTS

[Guest guest]

Robin-

I have a confession -- I did the same thing!! Aubrie was on Propulsid

for reflux as an infant. We were convinced the medication was making

it worse, so we stopped it without consulting the dr. She improved

dramatically. When I told the doc, she was fine with it as she wasn't

really confident in the med either. We ended up using another medicine

with much better results -- Prilosec. See -- you know what's

best for Ally. Follow your instincts and make decisions that you

can live with.

Michele W

mom to Aubrie (almost 3) CHaRgE and (8 yrs), wife to DJ,

in IL

west@...

[Guest guest]

Robin,

Jack is totally tube fed. He weighs 10.4kgs (22lbs 14oz) and is 81cms tall.

He is 3yrs 2mths old. He was 7lbs 10oz and 51cms tall (head circ 35.5cms) at

birth.

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland

[Guest guest]

Debbie

Ally is on Propusid and Pepcid. Well I have a little confession - At her appt

last week this same Dr told me that Ally would always be on medication to

control her reflux and that was another reason for his insistence on the tube.

Ally has been having horrible stomach pain from gas (that is what the xray

showed as the cause) and I read on the internet that Propulsid can cause awful

gas in 5% of people. SOOOOOOOOO - I haven't given her Propulsid since last

Thursday. She has not had anymore screaming gas episodes AND she has not thrown

up any of her food. Looks like he was wrong - she CAN eat without it. I

haven't broken this news to the Dr yet. I am not advocating taking your child

off of their meds but I think I did the right thing here.

Robin defiant mom to Ally 2

[Guest guest]

Hi Robin, Although my daughter is 12 I do remember that she was about 22

pounds at 2 and not even as tall as Ally. her height sounds good especially

if you believe in the " double the height at age 2 to get the approx. adult

height. " She was also completely oral by that age and even at her current

age she is still not on the

Chart for her weight and height and she eats normally. In my opinion, if its

not dangerous for her to eat orally, why put her back 2 steps just to gain a

pound or two??. My daughter ate alot of Farina/fruit(add butter for

calories!) milky mashed potatoes with butter and bananas with pudding mashed

to put on some weight at that age. She also didn't drink that much either so

hang in there she'll gain!!

[Guest guest]

Hi Robin, my daughter Susie was tube fed till she was 9 months old

and she didn`t really start gaining till she was on oral feedings.

Ally is bigger than Susie was at that age, Susie is now 35 months old

and 35 inches tall, and totally oral. And her doctor is very pleased

with her growth, And you can up her calories without going to a tube,

as for the aspiraton, did your doctor suggest any medications for

that instead of jumping to tube feeding?? Remember that doctors don`t

know everything, and you have to use your instinct as a mother, so do

what you feel is best for Ally. And once children are on tube

feedings its harder to get the doctors to do anything to get her off

it. While Susie was on the tube I was advised by her development

consultant to fight to get her off it, which meant alot of training

and demanding that her doctor take it out or I would.

Debbie, mother to Susie 35 months.

[Guest guest]

In a message dated 9/20/00 2:36:41 PM Eastern Daylight Time,

RobinAlanT@... writes:

<< Anybody with young CHARGERS (let say 12 mths to 5 yrs)

What is their weight/height and how are they fed. >>

robin, at 19 months...michael was 31 inches long and only 19.135 ounces! i

have my baby book in front of me. by 23 months he was up to 22 lbs and gained

1/4 inch in height. he was small when he was born (4lbs 4oz) but still. he

has never been g-tube fed, but we dont have aspiration issues (which is

probably why this is such an issue, not her weight itself) to deal with. at

8, he is 45+lbs so he is still skinny but he has a healthy diet. perhaps you

can explore ways to increase calories. can you get a nutritional workup? i

personally am always leary when a dr. has such " emergency " in his

voice--especially when YOU dont see it:-)

kris

mom to michael (8) CHaRGE syndrome and kolleen (18 months)

long branch, nj

[Guest guest]

is 6 and weighs around 42 pounds and is around 41 inches.

--

On Wed, 20 Sep 2000 14:34:07

RobinAlanT wrote:

>May I take an informal poll?

>

>Anybody with young CHARGERS (let say 12 mths to 5 yrs)

>

>What is their weight/height and how are they fed.

>

>Robin mom to Ally 2

>

Get your FREE Email and Voicemail at Lycos Communications at

http://comm.lycos.com

[Guest guest]

Brittney is 8 and weighs 42lbs.....43 " tall. Takes EVERYTHING via g-tube.

Amy

Re: WEIGHTS

>

> is 6 and weighs around 42 pounds and is around 41 inches. He is

gtube fed 5 cans of pediasure a day. He also eats 1 yogurt, 1 scoop of ice

cream, and water daily by mouth.

>

> Nicol

> --

>

> On Wed, 20 Sep 2000 14:34:07

> RobinAlanT wrote:

> >May I take an informal poll?

> >

> >Anybody with young CHARGERS (let say 12 mths to 5 yrs)

> >

> >What is their weight/height and how are they fed.

> >

> >Robin mom to Ally 2

> >

>

>

> Get your FREE Email and Voicemail at Lycos Communications at

> http://comm.lycos.com

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

is 6 and weighs around 42 pounds and is around 41 inches. He is gtube

fed 5 cans of pediasure a day. He also eats 1 yogurt, 1 scoop of ice cream, and

water daily by mouth.

Nicol

--

On Wed, 20 Sep 2000 14:34:07

RobinAlanT wrote:

>May I take an informal poll?

>

>Anybody with young CHARGERS (let say 12 mths to 5 yrs)

>

>What is their weight/height and how are they fed.

>

>Robin mom to Ally 2

>

Get your FREE Email and Voicemail at Lycos Communications at

http://comm.lycos.com

[Guest guest]

Robin,

I am thrilled to hear that Ally isn`t having bad gas pains

anymore. And I was also told that Susie would always be on meds for

her severe reflux, but I took her of propulsid when she was having

bad gas too, and then was told that all propulsid does is helps to

digest food a bit faster, so it wasn`t really stopping her reflux

anyways, the zantac was. But about a year ago Susie stopped

refluxing, we guess she either outgrew it or because the solid foods

have a harder time coming back up, but she has never had any

pneumonia or chocking spells since, and alot of adults suffer from

severe reflux and they don`t have a tube, they swallow, and Ally is

probably doing just that. maybe thats why she hasn`t gotten pneumonia.

Debbie, Mother to Susie.

[Guest guest]

HI,

Madison is 3 yrs old this month. She weighs 25 lbs. 4 oz. and is 34 inches

tall.

At 2 she weighed almost 21 lbs. and was 31 inches tall.

She was totally oral until 14mos old. Then was supplemented at night with

extra calories. She has been totally oral now since Labor Day. Her g-tube

fell out while our babysitter was here and closed up within 3 hours!

Luckily, we have not needed it!

Jodie McCutcheon

[Guest guest]

Berkeley is 16 months old, 14lbs 10oz and 27 inches long. She is tube fed.

WEIGHTS

>

> May I take an informal poll?

>

> Anybody with young CHARGERS (let say 12 mths to 5 yrs)

>

> What is their weight/height and how are they fed.

>

> Robin mom to Ally 2

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Robin,

You never know til you try. Kennedy's paediatrician is all for trying it out to see how they do off their meds. Kennedy has been med-free now for quite some time. I hope Ally is at some point, too. Congratulations on being defiant, it's a quality we all need sometimes especially with these kids!

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: Re: WEIGHTS

DebbieAlly is on Propusid and Pepcid. Well I have a little confession - At her appt last week this same Dr told me that Ally would always be on medication to control her reflux and that was another reason for his insistence on the tube. Ally has been having horrible stomach pain from gas (that is what the xray showed as the cause) and I read on the internet that Propulsid can cause awful gas in 5% of people. SOOOOOOOOO - I haven't given her Propulsid since last Thursday. She has not had anymore screaming gas episodes AND she has not thrown up any of her food. Looks like he was wrong - she CAN eat without it. I haven't broken this news to the Dr yet. I am not advocating taking your child off of their meds but I think I did the right thing here.Robin defiant mom to Ally 2"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Robin,

Kennedy is a little over 2 1/2 years old and is fed 99% of her food through a g tube button, she is 30lbs (can't remember her height right

now, I'll have to look it up).

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

WEIGHTS

May I take an informal poll?Anybody with young CHARGERS (let say 12 mths to 5 yrs) What is their weight/height and how are they fed.Robin mom to Ally 2"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

> Reply to an informal poll?

>

> Anybody with young CHARGERS (let say 12 mths to 5 yrs)

>

> Sullivan is 20 months weighs 22 pounds and is 30 inches long. He

is totally fed via gastrostomy tube with ProSobee concentrated at

1k/cal per ml (how is that for a confused Canadian reply).

Good luck....Hope you post the results

Tracey

[Guest guest]

JIllian is 28 months old and she is completely orally fed and always has

been... She weighs 20 lbs and is 31 inches tall. That was her last report at

the Endocrinoligist a few months ago. If she has grown since then, I am not

sure, But she had only grown 3/4 lb and 1 inch in a years' time....

Foley

Mom to 5, ( CHARGE in heaven) and Jillian mo. cHaRGE

Re: WEIGHTS

>

> In a message dated 9/20/00 2:36:41 PM Eastern Daylight Time,

> RobinAlanT@... writes:

>

> << Anybody with young CHARGERS (let say 12 mths to 5 yrs)

>

> What is their weight/height and how are they fed. >>

> robin, at 19 months...michael was 31 inches long and only 19.135 ounces! i

> have my baby book in front of me. by 23 months he was up to 22 lbs and

gained

> 1/4 inch in height. he was small when he was born (4lbs 4oz) but still. he

> has never been g-tube fed, but we dont have aspiration issues (which is

> probably why this is such an issue, not her weight itself) to deal with.

at

> 8, he is 45+lbs so he is still skinny but he has a healthy diet. perhaps

you

> can explore ways to increase calories. can you get a nutritional workup? i

> personally am always leary when a dr. has such " emergency " in his

> voice--especially when YOU dont see it:-)

> kris

> mom to michael (8) CHaRGE syndrome and kolleen (18 months)

> long branch, nj

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Okay, I had a brain freeze. I can't add... Jillian is 30 months old...not

28... SORRY...

Foley

Re: WEIGHTS

>

> In a message dated 9/20/00 2:36:41 PM Eastern Daylight Time,

> RobinAlanT@... writes:

>

> << Anybody with young CHARGERS (let say 12 mths to 5 yrs)

>

> What is their weight/height and how are they fed. >>

> robin, at 19 months...michael was 31 inches long and only 19.135 ounces! i

> have my baby book in front of me. by 23 months he was up to 22 lbs and

gained

> 1/4 inch in height. he was small when he was born (4lbs 4oz) but still. he

> has never been g-tube fed, but we dont have aspiration issues (which is

> probably why this is such an issue, not her weight itself) to deal with.

at

> 8, he is 45+lbs so he is still skinny but he has a healthy diet. perhaps

you

> can explore ways to increase calories. can you get a nutritional workup? i

> personally am always leary when a dr. has such " emergency " in his

> voice--especially when YOU dont see it:-)

> kris

> mom to michael (8) CHaRGE syndrome and kolleen (18 months)

> long branch, nj

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

MY SON WILLIE IS JUST TURNED 10YRS OLD,AND HAS ALWAYS BEEN TOTAL G-

TUBE, HE WAS 8LBS-4OUNCES AND BIRTH AND NOW WEIGHS 46LBS AND A LONG

SLIM 48 INCHES. DR.S SAY HE WILL ALWAYS BE G-TUBE THEREFORE, HIS

WEIGHT WILL ALWAYS BE CONSIDERABLY BELOW NORMAL.

[Guest guest]

Hi everyone, I forgot to add Susie`s weight to her age and height.

Susie is 35 months old, 35 inches tall, and 26 pounds, she eats very

well, all oral. She was 4 pounds 4 ounces at birth.

[Guest guest]

WEIGHTS

I am a community childrens nurse and I look after a boy with Charge. He is

2yrs. His weight at the moment is 9.94kgs and his height is 82cms. He is

Gastrostomy fed and has had a nissen fundoplication. The highest weight

that he has ever reached is 10.45kgs but he tends to lose it when having an

illness ie a cold. His weight gain is slow. Does anyone know if chargers

have a problem with the Growth Hormone?

>

> May I take an informal poll?

>

> Anybody with young CHARGERS (let say 12 mths to 5 yrs)

>

> What is their weight/height and how are they fed.

>

> Robin mom to Ally 2

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

[Guest guest]

Hi ,

I think growth hormone deficiency as a whole is actually quite rare in

CHARGE. However, there are Chargers who are GH deficient. My son Jack who is

38 mths old has had the preliminary GH test for IGF-1 and the result came

back very low. He sees the endo this Wednesday so we will see what the next

step is. He has so many other things going on at the moment that I think

they'll leave full testing for another 6 months or so. He weighs 10.4kgs and

is 81cms tall at the moment.

I would recommend that the little boy has a referral to a paed.

endocrinologist if he isn't seeing one already as there are many other

hormonal issue involved with CHARGE. Where abouts in the U.K are you?

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland

[Guest guest]

My son is 3 year and 4 mths old. He weighs 33 lbs and is 38 inches

tall. He is totally TUBE fed.

Re: WEIGHTS

In a message dated 9/20/00 2:36:41 PM Eastern Daylight Time,

RobinAlanT@... writes:

<< Anybody with young CHARGERS (let say 12 mths to 5 yrs)

What is their weight/height and how are they fed. >>

robin, at 19 months...michael was 31 inches long and only 19.135 ounces! i

have my baby book in front of me. by 23 months he was up to 22 lbs and

gained

1/4 inch in height. he was small when he was born (4lbs 4oz) but still. he

has never been g-tube fed, but we dont have aspiration issues (which is

probably why this is such an issue, not her weight itself) to deal with. at

8, he is 45+lbs so he is still skinny but he has a healthy diet. perhaps you

can explore ways to increase calories. can you get a nutritional workup? i

personally am always leary when a dr. has such " emergency " in his

voice--especially when YOU dont see it:-)

kris

mom to michael (8) CHaRGE syndrome and kolleen (18 months)

long branch, nj

" 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts, the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Hi all,

To answer your poll:

I have twin chargers- One is G-tube feed( for fluids) but, is now mostly oral

fed. Wt:29lb, HT: about 3ft 41/2 yrs

The other twin is Only oral fed and has done poorly-- WT: 26 1/2lbs, Slightly

over 3ft.

It has been quite a struggle! Jill

[Guest guest]

Robin,

na is just 13 months, weighs 21+ lbs and is something like 28¾". She is totally j-tube fed, 21hrs a day with a 3hr water window.

Campanalejohncampanale@...http://members.truepath.com/hedgebuilder0074/brianna.htmlhttp://members.truepath.com/hedgebuilder0074/newbrianna.html<><><><><><><><><><><><><><><><><><><><><><>HEDGEBUILDERS---Protecting YOUR family and you...... www.hedge.org/sr/0074.htm "Making the Internet Safe for Work and Play"<><><><><><><><><><><><><><><><><><><><><><>

WEIGHTS

May I take an informal poll?Anybody with young CHARGERS (let say 12 mths to 5 yrs) What is their weight/height and how are they fed.Robin mom to Ally 2"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org