i was reading up on some charge info

January 13, 2007

Marilyn and Deepta please read re arthritis in Charge kids.

>

Dear ,

There have been arthritis dx along with Charge. These Mom's have experience

with that.

And sleep issues are common in Charge.

I am happy to hear that Heath is not on the complex side of Charge, everyone

is happy to

hear that. But please don't feel like you can't say so, or that you can't

post about any

issue that does come up for you. Chargeland is very big territory.

;-)

in Ma. (, 21 yrs)

January 13, 2007

HI MICHELE TELL ME MORE i have also read on here that others

with charge children had a easy pregnancy and birth well kellie had a

normal pregnancy and birth not quick at all but i agree with you i

have been wondering to is this a charge thing easy pregnancys and

births what does any one els think of this would like you comments

please to me and michele it could be a charge thing eh xxrita kellie

and caitlyn chareg 1 year

January 13, 2007

the other day i was sitting here at my computer and wondered if

anything new had come about charge so i went surfing here and thereand

i came across something lisa had written regarding kennedy and her

birth for a long time i had thought all the children was worse off than

my heath so i didnt want to cause anyone pain by saying my child is not

that ill or i havent had this problem

now i have so many questions lisa said kennedys birth and pregnacy was

very easy well so was mine i never had labor with heath and he only

took 15 minutes to deliver is that common with charge children

also my son has arthritis how many charge children have that

also heath has insomnia and has a very hard time sleeping and staying

asleep

i have more questions but i dont feel like typing

i actually thought i was alone

January 13, 2007

>

> the other day i was sitting here at my computer and wondered if

> anything new had come about charge so i went surfing here and

thereand

> i came across something lisa had written regarding kennedy and her

> birth for a long time i had thought all the children was worse off

than

> my heath so i didnt want to cause anyone pain by saying my child is

not

> that ill or i havent had this problem

> now i have so many questions lisa said kennedys birth and pregnacy

was

> very easy well so was mine i never had labor with heath and he only

> took 15 minutes to deliver is that common with charge children

> also my son has arthritis how many charge children have that

> also heath has insomnia and has a very hard time sleeping and

staying

> asleep HI MICHELE TELL ME MORE i have also read on here that others

with charge children had a easy pregnancy and birth well kellie had a

normal pregnancy and birth not quick at all but i agree with you i

have been wondering to is this a charge thing easy pregnancys and

births what does any one els think of this would like you comments

please to me and michele it could be a charge thing eh xxrita kellie

and caitlyn chareg 1 year

> i have more questions but i dont feel like typing

> i actually thought i was alone

>

January 13, 2007

You're not alone. I'm a 28 year old CHARGER, and from what I know from Mom, she

had a easy pregnancy even though she was huge, all the amniotic fluid in there

plus a tiny baby. When she went into labour all the water came gushing out, and

she no longer looked pregnant. Mom never had pain medications when she was in

labour cause it was so easy. The doctors tried to stop the labour cause Mom was

7 months, but after seeing that my lungs have fully developed, I was given

medical permission to be born.

Arthritis is common for us to have, my understanding is because of my cranial

abnomalties, and over time it gets stiff, and produces arthritis. I have always

had insomnia, problems going to sleep and staying asleep, but not in that order

all the time. It changes whenever it wants to change - sometimes I have problems

going to sleep, and other times I have problems staying asleep.

Sincerely yours; Krista Bach. 28 year old CHARGEr.

michelle wrote:

the other day i was sitting here at my computer and wondered if

anything new had come about charge so i went surfing here and thereand

i came across something lisa had written regarding kennedy and her

birth for a long time i had thought all the children was worse off than

my heath so i didnt want to cause anyone pain by saying my child is not

that ill or i havent had this problem

now i have so many questions lisa said kennedys birth and pregnacy was

very easy well so was mine i never had labor with heath and he only

took 15 minutes to deliver is that common with charge children

also my son has arthritis how many charge children have that

also heath has insomnia and has a very hard time sleeping and staying

asleep

i have more questions but i dont feel like typing

i actually thought i was alone

---------------------------------

Ask a question on any topic and get answers from real people. Go to Yahoo!

Answers.

January 13, 2007

,

We all have a common bond in that our children each have CHARGE syndrome;

however, the range of variability of our experiences is HUGE. This goes

back to pregnancy, childbirth, and the individual experiences that led to

diagnosis, treatments and surgeries. You are NEVER alone and you should

never feel like you can't talk about something related to your child or

CHARGE here because you think more are " worse off " . This is an open forum

for all to discuss anything related to CHARGE. This is the one place where

people *will* understand! We would love to hear from you and talk about any

questions you may have.

I had an easy pregnancy, labour & delivery. The sleep issues are VERY

common in CHARGE. For example, it takes Kennedy an inordinate amount of

time to get to sleep compared to same-aged peers. For others, it's been

hard to keep them asleep, but easy to get them to sleep. There seems to be

many issues surrounding sleep in children with CHARGE. A lot of

" night-time " parties have been described over the years on the list and

Kennedy has those sporadically as well. (Waking up clapping, singing, ready

to play and start the day at 2am, for example). Kennedy doesn't suffer from

arthritis that I know of and I can't recall it being discussed too much on

the list but I'm sure that other parents have gone through that with their

child.

Hope this helps!

Hugs and don't be shy,

www.chargesyndrome.info

>

> the other day i was sitting here at my computer and wondered if

> anything new had come about charge so i went surfing here and thereand

> i came across something lisa had written regarding kennedy and her

> birth for a long time i had thought all the children was worse off than

> my heath so i didnt want to cause anyone pain by saying my child is not

> that ill or i havent had this problem

> now i have so many questions lisa said kennedys birth and pregnacy was

> very easy well so was mine i never had labor with heath and he only

> took 15 minutes to deliver is that common with charge children

> also my son has arthritis how many charge children have that

> also heath has insomnia and has a very hard time sleeping and staying

> asleep

> i have more questions but i dont feel like typing

> i actually thought i was alone

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

January 13, 2007

-

If there's one thing you must understand, it is that you are *not* alone!!!

Each of our kids is very different, but very similar too. You may not find

one family who has experienced things exactly as you have, but surely you'll

find several who share bits and pieces.

Now that you realize that you have friends on this journey, sounds like you

mind is overwhelmed with all the questions to ask them! We're not going

anywhere so take your time and ask away.

My delivery was difficult, Aubrie sleeps well, and she does not have

arthritis! How about that for no similarities. But I'm sure we'll find

some as we go.

Here's the thing. Even when our children's diagnoses and situations are

different, our experiences as parents are very similar - the pain, stress,

frustration, joys.

I'm glad you are feeling a part of the CHARGE family now!

Michele W

Aubrie's mom 9 yrs

January 13, 2007

I did not have an easy pregnancy or birth. I had polyhydramnios, which by the

sound of it a lot of you did too. I actually had back muscles detatching!

Then, 5 weeks before my due date I was in the hospital for a non-stress test and

we lost his heartbeat. They immediately put me to sleep and got him out in 7

minutes. The whole process from the time we lost the heartbeat to him being

born took no longer than 15 minutes!! He was born with no heartbeat and wasn't

breathing but they got him back and took him by ambulance to Syracuse. (an hour

and a half away)

I do remember being so hungry after he was born! Our hospital did a special

" celebration " dinner for the new mom and dad. We had real steak, potatoes,

veggies, and dessert! I cried through the whole thing because I couldn't see my

baby but we propped pictures of Jack up on the table so he could eat with us!

On a different note, Jack is having a lot of breathing issues. We took him to

the Dr. yesterday and they did an RSV test and when we took him back today they

said it was negative. Now they are thinking that all of his congestion in his

nose and chest are due to reflux. They want to do a swallow study early next

week. I'm not real familiar with the study but I know that a lot of your

children have had them done. Could someone explain how it is done? He had a

fundoplication and they think it may be too tight and the oral feeding are just

going into his lungs.

I'm just frustrated that I have been asking several different doctors about his

problems for 3 weeks now and they kept telling me that there is nothing they can

do and then, all of a sudden, there is a solution. I kept suggesting suction

and breathing treatments but no one would give it a second thought. I had to

get 4 different opinions before I found a doctor that would do something. It is

so frustrating when a doctor doesn't know a lot about CHARGE and dismisses

something as a stuffy nose. He has had a bilateral choanal atresia and it is

hard enough for him to breath without a stuffy nose! Is my son going to have to

stop breathing altogether for something to be done??? Sorry for the venting.

I'm just tired of stupid doctors.

One final comment.... Does anyone watch Grey's Anatomy? I have watched it since

the beginning and since Jack has gone through all of this I now have a new

perspective on the show. I can understand all of the medical lingo they are

throwing around! For example, There was a baby born with a jejunal atresia and

before Jack I would have had no idea what that was! However, now it adds a more

emotional side of the show because I understand what is happening more and

sometimes it makes me cry for the families. Especially when it involves a baby.

~

Mom to Jack (4 mo. CHARGEr)

________________________________________________________________________________\

____

Cheap talk?

Check out Yahoo! Messenger's low PC-to-Phone call rates.

http://voice.yahoo.com

January 13, 2007

I'm not sure about arthritis being " common " .hadn't really heard that. I do

know that several people have commented about it, though. I know Krisitn is

disagnosed as having JRA, and Deepta's Amita has it also. I'm not sure if

it is common, but it could make sense in that it is an autoimmune problem

and many of our kiddos have problems in that area.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

michelle

Sent: Saturday, January 13, 2007 8:42 AM

To: CHARGE

Subject: i was reading up on some charge info

the other day i was sitting here at my computer and wondered if

anything new had come about charge so i went surfing here and thereand

i came across something lisa had written regarding kennedy and her

birth for a long time i had thought all the children was worse off than

my heath so i didnt want to cause anyone pain by saying my child is not

that ill or i havent had this problem

now i have so many questions lisa said kennedys birth and pregnacy was

very easy well so was mine i never had labor with heath and he only

took 15 minutes to deliver is that common with charge children

also my son has arthritis how many charge children have that

also heath has insomnia and has a very hard time sleeping and staying

asleep

i have more questions but i dont feel like typing

i actually thought i was alone

January 14, 2007

Hi ,

My son Felix is 9 months old and has had 2 swallow studies. Basically

they put him in a car seat-like chair with an X-ray machine around

it. We gave him food with barium in it - a bottle the first time and

I fed him yogurt the second time - and they watch the food move

through his system on a TV screen. They can see if his swallowing is

coordinated or not and where he runs into trouble (ie: can he get it

to the back of his mouth and the problems start there or does he not

know what to do with the food in his mouth, etc.) They will determine

whether he is aspirating or not and that will allow you to make some

decisions. In my experience it has been a quick relatively painless

experience for Felix.

Our guy can't swallow, although he did improve from the 1st study to

the 2nd and is scheduled for a third when he turns a year. Since

Felix can't swallow and has reflux due to a TEF EA repair our docs

gave him a G-J tube at 6 weeks of life and he has been taking his

food directly into his jejunum since then to prevent reflux and

aspiration. He has really thrived and grown well with the J-tube. He

is 21 pounds at 9 months! His docs were really concerned about

aspiration of food from reflux and (knock on wood) we have not had

any pneumonias or respiratory infections (he came home at 3 months).

The last thing I will mention is that at four months (after we had

him home for a month) we had Felix trached at the recommendation of

his ORL doctor. For us, it was the best thing we could have done for

Felix. I always say, I never realized how much Felix was struggling

to breath until I saw him with the trach. He was like a new baby - he

became so interested in learning about his environment and in

socializing.

I know these are scary things to think about, but I think of them as

temporary fixes to help Felix concentrate on his development. We hope

that as he grows and gets stronger he will learn to swallow as so

many of the other Charge kids have and will be able to get rid of the

tube and the trach. Until then, they are taking away a stress on his

little body and allowing him to take the energy he was spending

trying to eat or breath and focus it on learning. As I said despite

having the tube and trach, Felix has been doing really well - he is

sitting up now and vocalizing when he sees us or is happy playing. He

amazes us every day with his strong spirit and tough resolve!

I hope this helps and if you want to e-mail me off-list about any of

this, please feel free. (kzkoehler@...)

Best of luck,

Mom to my X-men: Max (almost 3) and Felix (9 month CHarGEr)

>

> I did not have an easy pregnancy or birth. I had polyhydramnios,

which by the sound of it a lot of you did too. I actually had back

muscles detatching! Then, 5 weeks before my due date I was in the

hospital for a non-stress test and we lost his heartbeat. They

immediately put me to sleep and got him out in 7 minutes. The whole

process from the time we lost the heartbeat to him being born took no

longer than 15 minutes!! He was born with no heartbeat and wasn't

breathing but they got him back and took him by ambulance to

Syracuse. (an hour and a half away)

>

> I do remember being so hungry after he was born! Our hospital did

a special " celebration " dinner for the new mom and dad. We had real

steak, potatoes, veggies, and dessert! I cried through the whole

thing because I couldn't see my baby but we propped pictures of Jack

up on the table so he could eat with us!

>

> On a different note, Jack is having a lot of breathing issues. We

took him to the Dr. yesterday and they did an RSV test and when we

took him back today they said it was negative. Now they are thinking

that all of his congestion in his nose and chest are due to reflux.

They want to do a swallow study early next week. I'm not real

familiar with the study but I know that a lot of your children have

had them done. Could someone explain how it is done? He had a

fundoplication and they think it may be too tight and the oral

feeding are just going into his lungs.

>

> I'm just frustrated that I have been asking several different

doctors about his problems for 3 weeks now and they kept telling me

that there is nothing they can do and then, all of a sudden, there is

a solution. I kept suggesting suction and breathing treatments but

no one would give it a second thought. I had to get 4 different

opinions before I found a doctor that would do something. It is so

frustrating when a doctor doesn't know a lot about CHARGE and

dismisses something as a stuffy nose. He has had a bilateral choanal

atresia and it is hard enough for him to breath without a stuffy

nose! Is my son going to have to stop breathing altogether for

something to be done??? Sorry for the venting. I'm just tired of

stupid doctors.

>

> One final comment.... Does anyone watch Grey's Anatomy? I have

watched it since the beginning and since Jack has gone through all of

this I now have a new perspective on the show. I can understand all

of the medical lingo they are throwing around! For example, There

was a baby born with a jejunal atresia and before Jack I would have

had no idea what that was! However, now it adds a more emotional side

of the show because I understand what is happening more and sometimes

it makes me cry for the families. Especially when it involves a baby.

>

> ~

> Mom to Jack (4 mo. CHARGEr)

>

______________________________________________________________________

______________

> Cheap talk?

> Check out Yahoo! Messenger's low PC-to-Phone call rates.

> http://voice.yahoo.com

>

January 14, 2007

,

I am emailing you my phone number from my AOL account...feel free to call and

we can discuss some of those issues.

Amy

Waggoner wrote:

I did not have an easy pregnancy or birth. I had polyhydramnios, which

by the sound of it a lot of you did too. I actually had back muscles detatching!

Then, 5 weeks before my due date I was in the hospital for a non-stress test and

we lost his heartbeat. They immediately put me to sleep and got him out in 7

minutes. The whole process from the time we lost the heartbeat to him being born

took no longer than 15 minutes!! He was born with no heartbeat and wasn't