Re: Many Questions

[Guest guest]

To anyone who can help:

Our problem right now is , who will be 20 mths on Jan 8, can

cruise okay, stand up fine holding onto something, but when it comes to

trying to stand or walk, he always wants to go backwards. He falls like

a rock, with no bending. He also won't get down from a standing

position (he can when kneeling). When I walk holding his hand, he is

pretty good, when I walk behind him and just touch his shoulders

lightly, he walks. The minute he feels me away, he goes backwards.

Anyone have these experiences? I really need some help!!! What did you

do? What about getting down from standing? We think it is possible he

might be having depth perception problems but we are not sure. His

sight is pretty good.

Also, how do you get your child to feel hungry and ask to eat? Right

now is so well satisified because we keep him that way.

Yesterday I didn't feed him because I wanted him to initiate that he

wanted to eat. Well, needless to say, he took 20 spoons of baby food

peaches. The I gave him his g-tube feeding. Should I just keep giving

him less and less through the g-tube during the day and feed him at

night? No one (therapists etc,) really no what to do or can't direct me

with this.

Thanks in advance for any help or suggestions.

Debbie Matasker mom to w/CHARGE 20 months, 4

[Guest guest]

Cheryl-

I don't know if this will work the same for you, but this is how we got

Aubrie oral during the day. I had tried leaving her off her night feed

so she'd wake up hungry. Didn't work. I tried skipping a meal to make

her hungry. Didn't work. But one day (at the IN CHARGE conference

actually) she accidentally didn't get all of her first feed of the day.

Then when I fed her the second meal at the normal time interval, she

gulped it down. When I came back and told my ST, she suggested that we

orchestrate the same scenario. You know how if you don't eat any

breakfast you can make it all day without hunger, but if you eat just a

bit in the am, you're starved by late morning? We hoped it would work

again. I did that for a few days I think. And if I recall correctly,

it worked ok. But I was tube-feeding her that first half-meal. Then

I'd top-off her oral feeds with enough tube-feeding to make what I

thought the volume of a full meal should be. When I stopped the tube

part, she took off orally. And she totally quit vomiting. I think I

was truly overfilling her! I really think, atleast in our case, she

never had a chance to get hungry cuz I kept putting more in her by

tube. Now she eats totally orally by day. I wish she'd eat more, but

she's maintaining her weight. A good meal for her is one small jar of

baby food and about 1 oz of formula. I put a scoop of baby food powder

in the baby foods that have little calories (like carrots) to beef them

up a bit. She seems to prefer the texture that way anyway so it works

well. Our plan is to slowly wean off the night tube once we're

confident in her weight on the oral daytime plan.

I hope something similar works for you. I am so thankful that that

therapist gave me " permission " to quit tubing her and see what

happened. If I'd never just done it, it never would have happened. Our

thought was to try it for a week or 2, and if it failed we'd go back to

the tube and try again in a month or so.

Good luck! And with the falling backward thing, we're not to that point

yet, but even with sitting, Aubrie is always leaning back. Her natural

position is arms extended to her sides and body pushing back. I've been

wondering how that's going to work with walking. LMK what works for

you. Or atleast, keep a mental note so you can reply when I ask the

same question in a few years:-)

Michele

mom to Aubrie (13 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Michele,

Congratulations on the oral feeding. Have you tried " Polycose " ? It's a

powder you add to foods, drinks or formula. It has " 8 " calories per teaspoon

and WORKS !!!

We add 2 Tablespoons to every can of pediasure that Tryny gets.

If you want to try it without going out and buying a whole can (as it's not

cheap and Tryny's insurance pays for Tryny's), let me know, I have plenty.

I'd be glad to send you some. That way you can give it a try for a couple of

weeks to see if it makes a difference.

Debra

Mother to Trynton (4 yr. old CHARGEr)

and 6 others

[Guest guest]

<< For our son , balance and self righting reflexes were a definite

issue. When he began to independantly walk at age 4, he would just be

standing and suddenly fall, sideways, forward or backwards, and although he

looked very startled, he did nothing to break his fall, his body didn't

bend, his arms didn't go out. Needless to say he took many a blow to the

head. >>

Hi,

, now 6 1/2, had a very difficult time learning to walk. He was almost

3 before he began to take tentative steps. Once he had the concept down he

fell " all the time " . When he went to pre-school, they insisted on putting him

in a room with wall to wall carpeting to try to buffer his falls. He would be

sitting in a chair just fine, and then *boom* he would be on the floor!

He took *many* blows to the head too. Fortunately we had the same

pediatrician thru it all because honestly, he looked awful!

We had a bit of a family feud because my older sisters insisted that

needed to wear a helmet. We talked to all of the professionals involved and

*we* decided that the helmet was not in 's best interest. Needless to

say, my sisters weren't happy. But to be blunt, I think they were more

concerned about how they felt rather than how the helmet would affect .

Janet

Wife to Matt

Mom to & (CHaRGEr) 6 1/2, nne 21 months, and

Mom to 7 months, and 16 months.

PS: The sick season has hit the Murray house: We have ear infections,

bronciolitis, runny noses, antibiotics, nebulizers...............

UGH!

[Guest guest]

For our son , balance and self righting reflexes were a definite

issue. When he began to independantly walk at age 4, he would just be

standing and suddenly fall, sideways, forward or backwards, and although he

looked very startled, he did nothing to break his fall, his body didn't

bend, his arms didn't go out. Needless to say he took many a blow to the

head. When he began to walk a few steps at age 3, he would start out

uprights, and then gradually begin to lean - and try to walk at an angle

(instead of being upright, leaning at a 45 degree angle to the floor) and

his response to correct this was to try and speed up. He still is easily

tricked (now he's 9). Though he takes most of his falls on his rump now,

like any other kid, and he no longer just falls " out of nowhere " , if he is

standing still and I am standing next to him, and I move something I am

holding, or I gently move my body (similar to being stopped at a traffic

light in the car, and the car next to you moves and you think you are

rolling backwards) , he will respond as if he is moving and try to catch

himself (often causing him to fall!). It is as though he is very visually

dependent for his balance. In physical therapy it is amazing the things he

can do if he could only have one hand holing on to anything, as though for

a point of reference. On the flip side, most things invloving lots of

spinning or multiple axis of rotation don't phase him at all, especially if

he has something to hold onto.

One of the reasons we didn't realize was deaf until he was 3 is

because his neonatal ABR was " within normal limits " . Having a trach,

having multiple ear infections and multiple respiratory ailments, being low

tone, and being able to compensate in other areas had many a therapist in

active debate about why didn't seem to respond to sound consistently.

It was because of the state mandated hearing screening to enter special day

pre-school that we discovered was deaf. I guess the moral to the

stroy is to have their hearing checked regularily, regardless of the

results.

Happy New Year to All,

Yuka

[Guest guest]

Debra-

We tried polycose once when we had used it briefly in the hospital.

Aubrie didn't do great on it at the time but a lot has changed since

then. It's convenient to use the formula now as we have it handy. It's

got 40 cal/scoop so it's pretty concentrated. We see the GI doc in

March. I might ask her (or the ped) about switching to polycose at

sometime. Thanks for the info!

How'd Tryny doing?

Michele

mom to Aubrie (13 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Hey we had Maddie on polycose for awhile too. It doesn't have any taste (at

least she never noticed) and it worked for us too! Just wanted to add my 2

cents..

Bibo Vaughn

Mom of Maddie(CHARgE) - 11 & Philip-10

Granger, IN

bibovaughn@...

AOL IM bibommm

ICQ Pager http://wwp.mirabilis.com/11128396

" Live Long and Prosper " Mr. Spock

>Congratulations on the oral feeding. Have you tried " Polycose " ? It's a

>powder you add to foods, drinks or formula. It has " 8 " calories per

teaspoon

>and WORKS !!!

>We add 2 Tablespoons to every can of pediasure that Tryny gets.

>

>If you want to try it without going out and buying a whole can (as it's not

>cheap and Tryny's insurance pays for Tryny's), let me know, I have plenty.

>I'd be glad to send you some. That way you can give it a try for a couple

of

>weeks to see if it makes a difference.

>

>Debra

>Mother to Trynton (4 yr. old CHARGEr)

>and 6 others

>

>------------------------------------------------------------------------

>

[Guest guest]

Michele,

Your welcome for the info, anything I can do just let me know. Believe me, I

know what it's like to battle weight, Tryny is always slipping. We actually

got him up to 37 pounds at one time, but that didn't last long as he was

hospitalized for pneumonia and lost down to 32 in one week. Now I can't get

him past 34 1/2, because I can't keep him well long enough.

Tryny was scheduled for surgery today but I had to reschedule it due to all

the snow and ice we have (I wasn't taking any chances on us getting stranded

or in a wreck) and him being in the hospital longer than needed. So I'm

hoping that it clears some as it's re-scheduled for next Tuesday. (it's

surgery on both eyes - and surgery # " 25 " )

Hope you all are keeping warm and safe in all this nasty weather.

Debra

mother of Tryny (almost 5 - in March - doesn't seem possible)

and to Steph, Niki, Chas, BJ

grama to Seasyn and Gabey

[Guest guest]

Debra-

I can't believe 25 surgeries in less than 5 years. It's

uncomprehendable! We are getting more snow today. I don't think they

called for accumulation, but it's really coming down. We've had to

postpone follow-up appointments for Aubrie too. Hate to do it, but it's

too risky to travel. I hope things clear up for his surgery on Tues.

Good luck!

Michele

mom to Aubrie (13 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

DW33333333@... wrote:

>

> From: DW33333333@...

>

> Michele,

>

> Your welcome for the info, anything I can do just let me know. Believe me, I

> know what it's like to battle weight, Tryny is always slipping. We actually

> got him up to 37 pounds at one time, but that didn't last long as he was

> hospitalized for pneumonia and lost down to 32 in one week. Now I can't get

> him past 34 1/2, because I can't keep him well long enough.

>

> Tryny was scheduled for surgery today but I had to reschedule it due to all

> the snow and ice we have (I wasn't taking any chances on us getting stranded

> or in a wreck) and him being in the hospital longer than needed. So I'm

> hoping that it clears some as it's re-scheduled for next Tuesday. (it's

> surgery on both eyes - and surgery # " 25 " )

>

> Hope you all are keeping warm and safe in all this nasty weather.

>

> Debra

> mother of Tryny (almost 5 - in March - doesn't seem possible)

> and to Steph, Niki, Chas, BJ

> grama to Seasyn and Gabey

>

> ------------------------------------------------------------------------

>

[Guest guest]

Jeanie,

I hope I didn't concern you about your son's weight. I'm sure he's fine if

your pediatrician isn't concerned Tryny is okay heighth wise, last time we

measured him he was right at 42 inches, but we have never had good luck with

weight ( Tryny just made it on the scale about 5 months ago). The average

weight for Tryny (who will be

5 in March) is somewhere in the mid 40's. But Tryny seems to always gain a

little then stagnate for awhile, then gets sick and looses............... By

the time we get him back up to where we started, it starts all over again.

I wouldn't be too concerned about your son's weight, maybe he's just a little

guy. But if you do have concerns, contact a Developemental Pediatrician, they

can help you the most. My developemental ped. doesn't have a good bedside

manner, but she's good at what she knows and how to help.

If I can ever be of any help or just to bounce questions off of, don't

hesitate to write.

Debra

[Guest guest]

Casey,

It's good to hear from other parents that have the same " weight " problems.

Unfortunately, Tryny is " force " fed (he gets 6 cans of pediasure a day pumped

into him - with the Polycose added) and he's at the maximum calories he can

get per day. The only problem is that when he gets sick (which is all the

time) or is hospitalized, he doesn't get his 6 cans per day and the weight

just plumets down.

I just wish we could have 3 weeks without being in the hospital ( then maybe I

could get a handle on it). But as I always tell everyone in jest - (Riley's

Hospital) is our

HOME and where we live is our VACATION spot.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks for writing and reassuring me that I'm not alone.

Debra

mother to Tryny (4 yr. CHARGEr)

and to Steph, Chas, Niki, Bj

grama to Seasy & Gabey

[Guest guest]

Debra,

Can understand waiting.. I would have too.

was about Tryny's age when he hit 35 pounds....

and stayed that way for over a year.. Drove me nuts..

even bugged the endo quite often.. he was 35 pounds..

took 16 months to go over 36.. Dont know what happened

(besides adding 3-4 cans of Ensure a day to his regular

diet) but he just started growing.. his ped calls it that 6yo

growth spurt (we hope anyway<G>)... He'll be 7 in 3

weeks and just hit 40 pounds.. but he's also grown up 2.5

inches.. still in the third percentile or lower tho

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514

[Guest guest]

> DEBRA,

> My 4 year old son, Zachary, no CHARGE, only weighs 33lbs. He is also

> pretty short. He is perfectly healthy and no one is concerned about his

> growth. I'm not sure what percentile he falls into, I'm sure it's low,

> but reading about Tryntons' weight and your concerns about it has me a

> bit worried.

> Where do you think Trynton should be in the weight department? Do you

> think I should be concerned that Zachary is not growing properly?

>

> Jeanie Colp

> mom to MacKenzie 7mos. CHARgE, Tyler 7, & Zachary 4

> Nova Scotia, Canada

>

>

Jeanie,

I saw your post and thought I should respond. My daughter, who turned 4

in November, was just in for her 4 year old physical. She is very tall

and slender. She is 43 inches and 42.5 lbs. She towers over all the

other kids at nursery school. Zachary is a boy, and technically, should

fall near or a little below where is (she is in the 95%tile for

height and 90th for weight. HOWEVER, we have a nephew who is much

shorter than her and I believe he weighs about 35 lbs and is one month

younger. There is nothing wrong with him, he is perfectly healthy. His

parents also aren't giants either. My husband is 6'3. , my

CHARGEr is 20 mths and weighs 25 lbs and is 33 inches. He falls into

the 25%tile. I think that even though he might have grown to be 6 feet

without CHARGE, because he does have CHARGE might take some off the

height he would have normally been, but he isn't THAT tiny at the

present.

I think if you are worried it doesn't hurt to pay a visit to the Endo,

but I don't see any reason for concern myself. I think all kids will be

however big or small they are. One of the male pediatricians we see is

only 5'1!

Debbie Matasker mom to 20 mths w/CHARGE, 4

[Guest guest]

Debra,

I threatened to use the hospital address on my tax forms

for the first two years with

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514

[Guest guest]

Debbie,

What exciting news about .s hearing!!! I am so happy for you guys!

About the walking, both my girls could cruise for a really long time, I don't

have my charts in front of me now, but I would have to say probally a good

year, even with us VERY LIGHTLY touching their shoulders. Unbelievably

frustrating, as it was so obvious that they could do it on their own, but just

needed that little bit of encouragement, but also the security to know that we

were there for what ever reason(?vestibular, vision?) It will happen

eventually. This summer was the first year that they walked outside in very

open space on their own, and that I can actually tell them to follow me

without them quitting and just sitting on the ground. Good luck.

Jen Katapodis, wife to Mike and mom to our CHaRgErs Emma (5) and Diane (3)

A short observation on the " short, webbed neck " discussions. Emma appears to

have a short neck but I think it is actually more a matter of her having poor

posture and low tone in her upper body she just sort of sits and stands with

her shoulder hunched. Never actually had any upper spinal xrays. Just my

observation.

Jen K

HAPPY BELATED BIRTHDAY CASEY!!!!!!!!!!!!!!!!!!!!

From the Katapodis'

[Guest guest]

Thanks to everyone who replied to my walking/eating question. I see so

many similar things as with all your kids and will try to extend my

patience. I guess working on walking, talking and eating all at the

same time is hard. I just see so much potential and the skills are

there that at times it becomes very frustrating.

One thing good that has happened, started singing and doing the

patty cake song - he does the entire song! I thought that was worth

more than walking right now!

Debbie Matasker mom to 20 mths, 4

[Guest guest]

Debbie Matasker wrote:

> One thing good that has happened, started singing and doing the

> patty cake song - he does the entire song! I thought that was worth

> more than walking right now!

I agree!!! That is fantastic. I love these stories of children who are

identified early and aided early and do so well with language! It is very

encouraging to those whose children receive early intervention.

who had to search for early intervention at 14 months and whose daughter

was not identified as deaf until 2 years old. ;( but who is now

communicating much more frequently now. I had to throw out all those

worries about children who do not communicate by age 3 or 5 or whatever as

Kendra did not sign until she was 8 years old. The fact that many CHARGERS

receive early intervention right away is a great and wonderful

improvement!!!!!!!

[Guest guest]

<< The fact that many CHARGERS

receive early intervention right away is a great and wonderful

improvement!!!!!!! >>

,

This is so true. We were VERY fortunate that the social worker assigned to

immediately after birth referred us to EI. I bless that woman

everytime I think of her. It's been almost 7 years and I still remember her

surprise when she asked me about EI and I had no idea what she was talking

about. None of the doctors had even mentioned it.

Janet

Wife to Matt

Mom to & (CHaRGEr) 6 1/2, and nne 21 months,

and Mom to 7 months, and 16 months.

[Guest guest]

<< None of our docs mentioned it either, in fact no one did.. I

didn't even find out about EI til after was 3.. so we

didn't have any help at all.

>>

Casey,

That's exactly it! My girlfriend's son was just diagnosed with PDD. His pedi

didn't think it was a problem that he wasn't talking at 2 yrs old, so she

never referred them. I suspected something, but this friend and I have a

precarious relationship when it comes to *emotional* issues. Her son ended up

with barely 6 weeks of EI because of it. It is very frustrating because he is

responding very well in the special ed program he is in (he's 3 now) and if he

had had some intervention sooner, he could well be even further along!

I referred myself before he turned 2 and he received EI for a year. He

didn't talk until he was almost 3. Of course when it came time for the

special ed. evaluation he did fine. It was nice to see him doing well but in

the end he needed special education after all. Last year his Kindergarten

teacher suggested keeping him back in Kindergarten, no services, nothing, just

repeat Kindergarten. I flatly refused. And I referred him for the TEAM

evaluation and he clearly was in need of special ed. services. It appears

that he may have learning disabilities along with ADHD predominantly

inattentive type (or something like that, there are so many different ways to

say this!

Janet

Wife to Matt

Mom to & (CHaRGEr) 6 1/2, nne 21 months, and

Mom to 7 months, and 16 months.

Weymouth, Massachusetts

[Guest guest]

Janet,

None of our docs mentioned it either, in fact no one did.. I

didn't even find out about EI til after was 3.. so we

didn't have any help at all.

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514