Re: a few questions (movement and growth)

[Guest guest]

In a message dated 2/25/2002 9:17:06 PM Eastern Standard Time,

rbwarter@... writes:

> 1) For those of you who have kids with absent semicircular canals,

> could you tell me a little about your child's motor

> development...specifically, is it " extra " hard to move from cruising

> to independent walking?

is almost 10, but he didn't walk *well* until he was well past 3 and

even now can be unsteady. He cruised for a long time.

> 2) For those of you who took your kids to an endocrinologist for

> growth hormones, how old were the kids, did they have a certain

> percentile weight that they needed to be in to be considered in need

> of extra help, how long had they not gained weight?

> Thanks for any info. We might be taking to an endocrinologist

> (even though they tested him at birth and said his hormones were

> all " normal " ). He has really slowed down in gaining weight and I

> know he is getting a good amount of caloies between the tube feeding

> and oral consumption.

We tried doing the test to determine if he was growth deficient at 2 and they

couldn't get the IV in so we never did it. We have since decided that as

long as he is running along on his own curve and his height/weight ratio is

fine, that we are going to leave it alone. has an underlying heart

condition, that I just don't think we need to aggravate with the testing.

The testing is pretty nasty from what I've heard.

Janet

Wife to Matt

Mom to 9 (CHaRGEr), 9, nne 5 on 3/29

Mom to Debi 17, Brittany 16, 4

Weymouth, Massachusetts

[Guest guest]

Barbara,

was physically capable of walking much sooner

than she actually did walk. She started taking

independent steps when she was 3 yrs and 3 mos old.

As soon as she was able to cruise her Physical

Therapist began to bring different walkers for her to

use so she could go where she wanted to go. When she

started preschool she was in this huge " cadillac " of a

walker and it was very helpful for her. We also did

alot of sensory integration therapy. I remember one

day I was laying on the floor doing exercises and

was laying next to me imitating sit ups. I

started doing leg lifts but she didn't do them so I

reached over and lifted her leg in the air thinking

she would then imitate the up and down motion but she

didn't. She just stared at her leg up in the air like

she didn't know what it was. She was physically able

to lift her leg up and down but I don't think she

realized that she had legs that she could control.

She reached up with her hands to touch her leg as if

to figure out what it was and what it could do. It

was a strange experience. We worked alot on body

parts and what they could do after that. It wasn't

too long afterwards (in CHARGE terms, maybe a few

months) that she realized that she could walk.

Mom to (12), Caleb (9), and (6 w/

CHARGE)

> Hi had a couple of questions for anyone/everyone...

> 1) For those of you who have kids with absent

> semicircular canals,

> could you tell me a little about your child's motor

> development...specifically, is it " extra " hard to

> move from cruising

> to independent walking?

>

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[Guest guest]

Has there been alot of charge parents who also have a child with ADD??

[Guest guest]

Has there been alot of charge parents who also have a child with ADD??

[Guest guest]

In a message dated 2/26/2002 9:20:23 PM Eastern Standard Time,

Nairduelle@... writes:

> Has there been alot of charge parents who also have a child with ADD??

>

>

Hi,

I have fraternal twins, has CHaRGE, and has LD, and ADHD.

Janet

Wife to Matt

Mom to 9 (CHaRGEr), 9, nne 5 on 3/29

Mom to Debi 17, Brittany 16, 4

Weymouth, Massachusetts

[Guest guest]

In a message dated 2/26/2002 9:20:23 PM Eastern Standard Time,

Nairduelle@... writes:

> Has there been alot of charge parents who also have a child with ADD??

>

>

Hi,

I have fraternal twins, has CHaRGE, and has LD, and ADHD.

Janet

Wife to Matt

Mom to 9 (CHaRGEr), 9, nne 5 on 3/29

Mom to Debi 17, Brittany 16, 4

Weymouth, Massachusetts

[Guest guest]

rbwarter wrote:

> Hi had a couple of questions for anyone/everyone...

> 1) For those of you who have kids with absent semicircular canals,

> could you tell me a little about your child's motor

> development...specifically, is it " extra " hard to move from cruising

> to independent walking?

> Barbara, mom to 16 months

Hi Barbara,

It felt as if Penina would never walk independently, at least when I compared

her to other children her age.

She finally did feel comfortable taking her first steps at 26 months, with the

help of a " magic belt " (a

belt folded in halt, Penina would hold the ends and gradually we slackened the

belt but she still felt as if

she had support.). Many of the CHARGE parents kept encouraging us (especially

Ana Saruski - thanks!),

telling us that it'll all fall into place eventually.

Penina's balance is still precarious. We never had a CT scan to find out what

shape the semi-circular canals

are in, but we have been working with a physiotherapist. Penina also did

horseback riding therapy for two

years, which helped tremendously. Now she is in an adapted program of art, gym

and swimming every Saturday.

The physiotherapist feels that Penina's balance will never be perfect, but as

Penina gets older she also

gets stronger and her coping skills get better. She can now recover better and

not fall down when she wheels

around. To my amazement, she learned to squat without holding on. Recently she

has learned to lift her body

off the ground (a few inches) in a jump.

The school has insisted that Penina should wear a helmet outdoors when playing

on the hard asphalt. The rest

of the (able-bodied) kindergarten children are pretty rough when they play, so

we agreed - just for this

year.

We're taking it one day at a time...

Never give up...

Anne, mm of Penina (CHArgE, 5 1/2 years old)

[Guest guest]

> 2) For those of you who took your kids to an endocrinologist for

> growth hormones, how old were the kids, did they have a certain

> percentile weight that they needed to be in to be considered in need

> of extra help, how long had they not gained weight?

> Thanks for any info. We might be taking to an endocrinologist

> (even though they tested him at birth and said his hormones were

> all " normal " ). He has really slowed down in gaining weight and I

> know he is getting a good amount of caloies between the tube feeding

> and oral consumption.

> Barbara, mom to 16 months

had followed below the growth chart curve, but parallel to it, for

about 14 months. Then she plateaued and continued at the same height/weight

for the next 18 months. Those should have been major growth times. the

chart took off again, and just stayed put. When we questioned the

Developmental Ped. during follow-ups, all she'd say was, " If she doesn't

start puberty, we'll see about hormone replacement then. " When we finally

got referred for and endocrinology consult, he said that growth hormones and

sex hormones are so different and that any time there is deviation in

growth, it warrants investigation. was documented as being " well

below the 2nd percentile (>>2%ile) " .

I can't say how the actual testing went since Rick took to it. but

he did say they started and IV; then they gave something to stimulate growth

hormone production. They would give it every hour and then draw blood after

a certain amount of time. this occurred over 4 hours. Rick said the

hardest part was keeping entertained. The Endo told us that they

start addressing growth hormone as being problematic at levels of 10 or

less. (Don't know what the measurement is.) After 4 hours of stimulation

only tested at a level of 7, clearly deficient. We started growth

hormone injections when she turned 3 years 3 months (October 1995.)

The best and biggest immediate benefit was the jump in motor skills due to

strengthening and increased stamina. She started walking in preschool using

a walker. By the end of school year she was walking totally on her own,

without even a hand on the wall; she only used another person's hand to hold

on uneven surfaces.

is still small, but she does continue to grow and gain weight (when

she doesn't have other stupid doctors messing things up - long story for

those who missed it!). The Endo says she doesn't have the " spectacular

growth " you sometimes see with growth hormone treatments; but at least she

is growing and he feels she wouldn't without it.

That is our experience with Endos and growth hormone to date. Feel free to

ask other questions.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (12, ADD) and (9, CHARGE+)

Wife of Rick

Indianapolis, IN

oganm@...

[Guest guest]

> 2) For those of you who took your kids to an endocrinologist for

> growth hormones, how old were the kids, did they have a certain

> percentile weight that they needed to be in to be considered in need

> of extra help, how long had they not gained weight?

> Thanks for any info. We might be taking to an endocrinologist

> (even though they tested him at birth and said his hormones were

> all " normal " ). He has really slowed down in gaining weight and I

> know he is getting a good amount of caloies between the tube feeding

> and oral consumption.

> Barbara, mom to 16 months

had followed below the growth chart curve, but parallel to it, for

about 14 months. Then she plateaued and continued at the same height/weight

for the next 18 months. Those should have been major growth times. the

chart took off again, and just stayed put. When we questioned the

Developmental Ped. during follow-ups, all she'd say was, " If she doesn't

start puberty, we'll see about hormone replacement then. " When we finally

got referred for and endocrinology consult, he said that growth hormones and

sex hormones are so different and that any time there is deviation in

growth, it warrants investigation. was documented as being " well

below the 2nd percentile (>>2%ile) " .

I can't say how the actual testing went since Rick took to it. but

he did say they started and IV; then they gave something to stimulate growth

hormone production. They would give it every hour and then draw blood after

a certain amount of time. this occurred over 4 hours. Rick said the

hardest part was keeping entertained. The Endo told us that they

start addressing growth hormone as being problematic at levels of 10 or

less. (Don't know what the measurement is.) After 4 hours of stimulation

only tested at a level of 7, clearly deficient. We started growth

hormone injections when she turned 3 years 3 months (October 1995.)

The best and biggest immediate benefit was the jump in motor skills due to

strengthening and increased stamina. She started walking in preschool using

a walker. By the end of school year she was walking totally on her own,

without even a hand on the wall; she only used another person's hand to hold

on uneven surfaces.

is still small, but she does continue to grow and gain weight (when

she doesn't have other stupid doctors messing things up - long story for

those who missed it!). The Endo says she doesn't have the " spectacular

growth " you sometimes see with growth hormone treatments; but at least she

is growing and he feels she wouldn't without it.

That is our experience with Endos and growth hormone to date. Feel free to

ask other questions.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (12, ADD) and (9, CHARGE+)

Wife of Rick

Indianapolis, IN

oganm@...

[Guest guest]

Marilyn,

I agree. We also noticed that didn't know she

had the back of her hands when she was signing. I

know it sounds so strange (and i guess it is!!)

Anyway, one day noticed our shadows on the wall

when we were signing to each other. When we both

signed " play " she stuck her face almost right next to

the shadow because she noticed that my sign had my

pinkie finger stuck out. She signed " play " with just

her thumb stuck out. We thought she just didn't have

the fine motor skills to move her pinkie. But she

studied the shadow. Then she studied my hand. Then

she studied her own hand and used her other hand to

raise her pinkie finger to make the correct sign. Her

vision was the limiting factor, not her fine motor

skills. After that, i put mirrors all over the house

at her level. She signed in from of the mirror so she

could see the front and back of her hands. She

noticed her own face and it's expressions. She would

stand in front of the mirror and move different body

parts to see what it looked like and to confirm that

she was actually doing it. She also liked to watch

herself sit and stand up and eventually walk back and

forth in front of the mirror. The mirror has been

like another eye for her and she still loves to play

in front of her mirror. By the way, her therapists

(especially her speech therapist) have learned that

she makes more progress if they will use the mirror

during their sessions.

Mom to (12), Caleb (9), & (6 w/ CHARGE)

Dallas, TX

--- Rick Ogan wrote:

> was probably around 8-months old when we

> realized she never did

> anything with her feet or legs.

> My Dad made this frame out of PVC that we could

> stand a full-length mirror

> in. We placed it horizontally on the floor beside

> her, and she really

> enjoyed looking at herself - upper body - for about

> a week. Then she

> finally seemed to realize that she was connected to

> " those things down at

> the other end " . She started playing with her feet,

> kicking her legs and

> pulling them up. We also had a little Sesame Street

> floor gym for her that

> she loved kicking. It was also great for getting

> her to reach. Not much

> later she was rolling more - we used it for

> incentive to roll towards - and

> actually started backscooting (pushing with her legs

> and arching her back)

> to get places.

> I think one of the best things we did was let her

> know she had feet!

> Friends in CHARGE,

> Marilyn Ogan

> Mom of Ken (12, ADD) and (9, CHARGE+)

> Wife of Rick

> Indianapolis, IN

> oganm@...

>

>

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