Question

[Guest guest]

Have you ever done saline sinus irrigation? You make a salt water

solution (6 oz water, 1/4 tsp pickling salt, 1/8 tsp baking soda) and

then use an infant bulb syringe to flush it up your nose. Sounds

gross, but it really helps cleanse the area, get all that mucous out,

relieve dryness, etc. Then you can sleep better and get less build-up

of phlegm in the night. It always helps me and prevents a full-blown

sinus infection.

I hope you feel better soon!

Michele W

>

[Guest guest]

We've had a problem with attending visually since she was little -

and vision is her strength. I don't know why, but some times she just

doesn't attend, and this has always been so. One interesting - and

irritating thing - is that when she's put her glasses on a chest or table and

then has to find them, she does so with her hand; it's as though she

cannot see them; yet I don't think anyone has ever seen this at school.

That said, I KNOW what Andy and I see on a routine basis at home!

Martha

[Guest guest]

This is so interesting. I hadn't posted yet in the conversation because

I wasn't, and still am not, sure of what I want to say. Aubrie also

uses touch over vision at times. I am certain that I noticed this when

she was younger. We'd have to tell her to look at whatever. I'm not

sure if she still does it -- but I'll be watching to see.

Michele W

Aubrie's mom age 7 yrs

Sirota wrote:

> Martha,

>

> That is very interesting...its as if she feels more

> comfortable with her sense of touch than her sense of

> vision.

>

> Vicky

[Guest guest]

My son Nicky is 12 and heading for puberty. It appears that as our kids get

towards this age, their behaviors tend to show " autistic like " tendencies. I

think it's due to anomolies of the brain that developed in utero as the other

CHARGE anomolies.

Nicky's behavior got so out of control that he has begun taking meds to help

him. Right now, he's probably going to become a residential student at

Perkins (where he goes to school).

Some days are better than others but there is help out there.

Take good care

Ellie J

Mom to Becca 14 and Nicky 12 (my CHARGER)

[Guest guest]

My son Wyatt does the same thing with looking up all the time especially when

someone is talking to him. I asked his neurologist about this because I was

concerned he was autistic as well. I have a co-worker who just found out her son

was autistic and he does the same all the time. He told me that because these

CHARGE kids are so delayed that they do show signs of autism but eventually when

they start developing better then this goes away. I am not sure if this is true

or not since Wyatt just started doing that but at least it is something. Wyatts

vision is fine but they said he will need glasses in the future.

mother to Wyatt age 6

--

___________________________________________________________

Sign-up for Ads Free at Mail.com

http://promo.mail.com/adsfreejump.htm

[Guest guest]

Dear Barb;

It's quite possible that there might be a retrovirus involved in

PSC, and that it hasn't been found yet. Just look at the controversy

surrounding the recent identification of a retrovirus associated

with PBC by Mason and Neuberger. Every time that Mason and Neuberger

publish on this, they get " slammed " by Gershwin, who has a number of

other alternative hypotheses. No one seems to be looking for such a

cause in PSC, and my guess is that they probably won't until the PBC

story/controversy is worked out, and until the researchers in the

field develop a little more tolerance for alternative hypotheses.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

hi Kim,

We asked about a job shadowing program for them and they said they

can't do it until highschool but we do take them on one community trip each

month

and we go to Shoprite and they buy the food to prepare their lunch.

[Guest guest]

Is there any way these boys could be out in the community? It really seems

that at that age they need to be learning work and social skills in a

community setting! What are their transition goals, how are these being met

in the school. From the jobs you describe I am envisioning they need

functional learning. Kim L

>

> Hi Everyone,

> I know i have probably asked this before but we are looking for new

> ideas for the 3 boys i work with. For those of you that have middle school

> and

> High School aged children can you tell me what a typical day is for them at

> school and what tasks are done with their teacher, Paraprofessional or on

> there

> own? We are looking for new skills to put in the boys programs. The boys are

> 16, 14, and 12. Here is what we already have in their programs:

>

> Go to homeroom accompanied by their paraprofessional

> Collect attendance from all the teachers

> 1st period teacher does group activity

> Perionds 2, 3 and 4 The teacher works with one student at a time while

> paraprofessionals work on IEP goals with the other 2 students

> During this time the students also deliver copies and attendance to the

> teachers.

> Periods 5 and 6 students prepare their own lunch in the home ec room

> Period 7 adaptive gym

> Periods 8 and 9 mainstream classes with paraprofessional

>

> Some of the other things we already do with the boys is load the soda

> machine, help in the guidance department, put stuff in the teachers mailbox,

> help

> out in the performing arts department. 1

> Thankyou for any suggestions. I really appreciate it.

> Lucille

>

>

>

[Guest guest]

At least it is a start going out in the community and working on what job

skills you can at school. Life out there on their own after school is just

so big that it takes years to prepare. Kim

>

> hi Kim,

> We asked about a job shadowing program for them and they said they

> can't do it until highschool but we do take them on one community trip each

> month

> and we go to Shoprite and they buy the food to prepare their lunch.

>

>

>

[Guest guest]

Kristy-

I haven't dealt with this, but I imagine it has been a very difficult

road. Just wanted to extend my hand in friendship and wish you the best

as you continue to navigate this path. I know that others who have

been there will jump in. I didn't know the official life expectancy was

so low. It seems to me that it all depends on what life-threatening

health conditions a child has. We have lost many CHARGErs in infancy,

but we also have adult CHARGErs on the list. I also don't think brain

damage is a given with CHARGE -- again, I think it would be the result

of other medical issues, like lack of oxygen to the brain. Some of the

kids have seizure problems, but I'm not sure if it's a CHARGE thing or

just one of those lovely added benefits some kids are blessed with.

Hugs-

Michele W

Aubrie's mom

>

[Guest guest]

Kristy, although we have had health issues with my son, we have been lucky

thus far, and it hasn't been bad. more than he should have to go through,

but nothing traumatic. I'm sorry your family has to deal with such

problems, but enjoy your child the most you can, love him and treasure him

for as long as you can. hugs going your way.

mom to timmy 9 ChARGE, keegan almost 7, liam 4 wife to pat

Question

>

> Hello all ~

> I have a general question... I know everyone here is very intelligent and

> wise with CHARGE, and some are still learning like me... I think I heard

> somewhere once that CHARGE is a learning process... anywhoie' I wanted to

> know if any other parents have encountered brain damage with their

children,

> my son is severe now, this past June he suffered segnificant brain damage,

> resulting in the lose of all his skills (Cognitive, signing etc.) He is

also

> having seizures now.... I just wanted to know if any other parents or

anyone

> has experience anything this tramatic? And I wanted to get some advice as

> well... We've changed our sons Advance Directives and now have a DNR in

> place... we also are interested to know if other " CHARGers " have

encountered

> such problems... I was reading in the CHARGE manual last night the life

> expectancy is approximately five years... our son just turned two in

> October... So I guess I'm just wondering what's next... eventhough I know

> there's no way of knowing... but any output and information would be

greatly

> appreciated.

> Thanks ~

> ~ Kristy

> Mother of Kaleb

>

> _________________________________________________________________

> Express yourself instantly with MSN Messenger! Download today - it's FREE!

> http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

>

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or

email info@....

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at www.chargesyndrome.org or by calling

1-.

>

[Guest guest]

Kristy,

I am so sorry to hear of all your family is going through right now.

I was surprised to read that Kaleb had begun to lose skills--this sounds like it

is a new thing for Kaleb. I, perhaps like other people, are wondering why? Has

the doctor been able to say why? Did it all happen at the same time as the

seizures or did he lose skills and then begin to have seizures?

I am sorry if these questions are too intrusive. But for as far as I know,

" sudden " brain damage is not part of the picture of CHARGE--others will know

better, but this is my experience.

You and your family will make the best decisions for all of you and Kaleb.

thinking of you.

pam

[Guest guest]

Kristy,

As wondered, I wonder also if there is a known cause for the brain

damage that your son, Kaleb, experienced? The loss of his skills must be

very, very difficult and my heart is with you.

In terms of other children who lost all or most of their skills, I do know

of at least one such person who has CHARGE. He did regain his skills and

health, but it was not easy. In his case, the loss followed a stroke that

occurred during surgery.

I am aware of many children with CHARGE who have regressed mildly or

substantially for as yet unknown or primarily unknown reasons. Our daughter

is in fact in this category. However, she did not need to learn to walk

again. Her regression mostly affected signing and communication and

behavior.

I'm sure that Meg Hefner may chime in with information regarding life

expectancy in CHARGE.

With best wishes and strong support coming your way.

[Guest guest]

,

How interesting! I have not heard of or experienced this situation with the kids

losing skills with no apparent explanation.

And I was not aware that your lovely girl had experienced this.

Hmmmm,

pam

[Guest guest]

Kristy,

I have been a caregiver to for 9 years, we are both 24,

and had gone to school with her since 3rd grade. She does have

significant developmental delays, her parents were told that she

wouldn't make it to 2, not walk eat or do anyting for herself. It

takes time but at 4 she was walking with a walker and was

independantly walking at 13, she started eating orally at 18 and was

fully potty trained at 21. While she is non verbal and has her own

signs to communicate, she still makes strides every day. She dresses

herself to an extent and definately lets her needs and wants be

known. There is hope.

, Caregiver to , 24, CHARGE

[Guest guest]

they told mum id live to nine months now im nineteen so with life

expectancy eather manuals old or you just cant tell which is true you

just cant. i think its like a lot of things hope that he defies all

odds and lives as long as me and longer as i hope to do love Ellen

howe

> Hello all ~

> I have a general question... I know everyone here is very

intelligent and

> wise with CHARGE, and some are still learning like me... I think I

heard

> somewhere once that CHARGE is a learning process... anywhoie' I

wanted to

> know if any other parents have encountered brain damage with their

children,

> my son is severe now, this past June he suffered segnificant brain

damage,

> resulting in the lose of all his skills (Cognitive, signing etc.)

He is also

> having seizures now.... I just wanted to know if any other parents

or anyone

> has experience anything this tramatic? And I wanted to get some

advice as

> well... We've changed our sons Advance Directives and now have a

DNR in

> place... we also are interested to know if other " CHARGers " have

encountered

> such problems... I was reading in the CHARGE manual last night the

life

> expectancy is approximately five years... our son just turned two

in

> October... So I guess I'm just wondering what's next... eventhough

I know

> there's no way of knowing... but any output and information would

be greatly

> appreciated.

> Thanks ~

> ~ Kristy

> Mother of Kaleb

>

> _________________________________________________________________

> Express yourself instantly with MSN Messenger! Download today -

it's FREE!

> http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

lisa i agree with you about life expectancy and sometimes we all

suprise the experts dont we i know i have Ellen howe

>

> Hello all ~

> I have a general question... I know everyone here is very

intelligent and

> wise with CHARGE, and some are still learning like me... I think I

heard

> somewhere once that CHARGE is a learning process... anywhoie' I

wanted to

> know if any other parents have encountered brain damage with their

children,

> my son is severe now, this past June he suffered segnificant brain

damage,

> resulting in the lose of all his skills (Cognitive, signing etc.)

He is also

> having seizures now.... I just wanted to know if any other parents

or anyone

> has experience anything this tramatic? And I wanted to get some

advice as

> well... We've changed our sons Advance Directives and now have a

DNR in

> place... we also are interested to know if other " CHARGers " have

encountered

> such problems... I was reading in the CHARGE manual last night the

life

> expectancy is approximately five years... our son just turned two

in

> October... So I guess I'm just wondering what's next... eventhough

I know

> there's no way of knowing... but any output and information would

be greatly

> appreciated.

> Thanks ~

> ~ Kristy

> Mother of Kaleb

>

> _________________________________________________________________

> Express yourself instantly with MSN Messenger! Download today -

it's FREE!

> http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

>

>

>

>

> Membership of this email support groups does not constitute

membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@c... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

Canada information and membership, please visit

http://www.chargesyndrome.ca, or email info@c...

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at www.chargesyndrome.org or by calling

1-.

>

[Guest guest]

Regarding brain damage, my daughter suffered 3 strokes while on life support

(ECMO and heavy blood thinners) during her first month of life. It affects

her left side and it is obvious when she walks (I swore she was a lefty like

her mom, granddad, and greatgranddad before the strokes!) and we don't know

yet if it affects her cognitively. She has not had any additional

" occurrences " since then.

My heart is with you with the DNR. was so sick and miserable in the

beginning I wasn't sure we were doing right by her. Luckily, after 15

months of misery she's a happy kid.

Lori Myers

Spouse - Trent, Children - (7), (4, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral

Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking

as of 12/22/04!), and Emma (2)

Dallas, Texas

Question

>

> Hello all ~

> I have a general question... I know everyone here is very intelligent and

> wise with CHARGE, and some are still learning like me... I think I heard

> somewhere once that CHARGE is a learning process... anywhoie' I wanted to

> know if any other parents have encountered brain damage with their

children,

> my son is severe now, this past June he suffered segnificant brain damage,

> resulting in the lose of all his skills (Cognitive, signing etc.) He is

also

> having seizures now.... I just wanted to know if any other parents or

anyone

> has experience anything this tramatic? And I wanted to get some advice as

> well... We've changed our sons Advance Directives and now have a DNR in

> place... we also are interested to know if other " CHARGers " have

encountered

> such problems... I was reading in the CHARGE manual last night the life

> expectancy is approximately five years... our son just turned two in

> October... So I guess I'm just wondering what's next... eventhough I know

> there's no way of knowing... but any output and information would be

greatly

> appreciated.

> Thanks ~

> ~ Kristy

> Mother of Kaleb

>

> _________________________________________________________________

> Express yourself instantly with MSN Messenger! Download today - it's FREE!

> http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

>

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or

email info@....

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at www.chargesyndrome.org or by calling

1-.

>

[Guest guest]

--I wish I could reach threw the computer and give you a

hug...... Mom to C.H.A.R.E.r 9/30/01-8/3/03 And

- In CHARGE , " Kristy Nowinsky " <kn274@h...> wrote:

> Hello all ~

> I have a general question... I know everyone here is very

intelligent and

> wise with CHARGE, and some are still learning like me... I think I

heard

> somewhere once that CHARGE is a learning process... anywhoie' I

wanted to

> know if any other parents have encountered brain damage with their

children,

> my son is severe now, this past June he suffered segnificant brain

damage,

> resulting in the lose of all his skills (Cognitive, signing etc.)

He is also

> having seizures now.... I just wanted to know if any other parents

or anyone

> has experience anything this tramatic? And I wanted to get some

advice as

> well... We've changed our sons Advance Directives and now have a

DNR in

> place... we also are interested to know if other " CHARGers " have

encountered

> such problems... I was reading in the CHARGE manual last night the

life

> expectancy is approximately five years... our son just turned two

in

> October... So I guess I'm just wondering what's next... eventhough

I know

> there's no way of knowing... but any output and information would

be greatly

> appreciated.

> Thanks ~

> ~ Kristy

> Mother of Kaleb

>

> _________________________________________________________________

> Express yourself instantly with MSN Messenger! Download today -

it's FREE!

> http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Hi all, are there any members on the list that take byetta?

I'm considering asking the doctor for it but am extremely needle shy. I know

your saying get over it but I'm really having a hard time with this. I do poke

myself to test my blood but that's in my finger and it doesn't seem so bad. Plus

I don't know if I have to draw the byetta from a bottle or does it come in

individual injections. I'm totally blind so drawing it might be a draw back?

If anyone can help I'll appreciate it.

Ricky Joe

[Guest guest]

HiRicky Jo,

Could you contact me off list so I can ask you something? Thanks. My

e-mail is ruthhogue@...

Ruth

From: blind-diabetics

[mailto:blind-diabetics ] On Behalf Of Ricky Joe Cook

Sent: Friday, January 02, 2009 2:47 PM

To: blind-diabetics

Subject: Question

Hi all, are there any members on the list that take byetta?

I'm considering asking the doctor for it but am extremely needle shy. I know

your saying get over it but I'm really having a hard time with this. I do

poke myself to test my blood but that's in my finger and it doesn't seem so

bad. Plus I don't know if I have to draw the byetta from a bottle or does it

come in individual injections. I'm totally blind so drawing it might be a

draw back?

If anyone can help I'll appreciate it.

Ricky Joe