Re: Re: Question about CHARGE and behavior

[Guest guest]

Rochel,

One can get information, tuck it away, do their best to intervene in the

best way possible, and still think of their child as baby first. From the

families I know, which is certainly only a limited group, and what studies

have been done so far, length of hospitalization does not appear to be a

good predictor of repetitive or other CHARGE behaviors, so rest assured on

that one. Yes it impacts development, but barring other developmental

reasons, once discharged babies catch up fast. You are an excellent mother,

loving , and finding out what you can do to help her in the best way

you can.

Kim

Mom to Dylan 7 CHaRGE, Kayla 13, Tyler 15

> I'm sorry, I didn't mean to give the impression I was sitting around

> biting my nails with worry about having behavior problems ;-)

>

> About her crying when picked up, it's actually mostly when

> approaching her in certain ways. When the nurse picks her up to

> hand her to me she usually doesn't cry. If the nurse picks her up

> to reposition her to take her temperature or some other procedure

> she is accustomed to, she gets fussy. If the nurse approaches her

> with a tube with that suctioning sound in the background she gets

> hysterical. It's comforting in a way because I guess it means she

> sees and/or hears well enough to know what is going on. But if she

> is predisposed to autism or OCD, I can see how this kind of stress

> could bring it on. I'm hoping I can create a more secure

> environment at home for her.

>

> Rochel

>

>

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

> CHARGE Syndrome Foundation.

> 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

> 7th International

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

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

hi Rochel

you might like to try always touching her on the back of the

hand/foot/forehead (someplace that isn't going to have an iv and seems

natural to you both) ... just before you pick her up ... i feel that as she

is so obviously reasponding to certain things and approaches you may as well

have a signal between yourselves that she will correspond to mean " mum is

here, and nothing yuck is going to happen next "

i have also worried for Josh on occasion as he has had occasion to " shut

down " when in hospital and lots of procedures have been needed ... my mummy

instinct to grab him and run for the door gets a real battering when i am

also aware that he needs that hospital care! The good news is that as soon

as we are back home he comes back to himself very quickly ... in fact the

last stay as soon as i put his toys back in the bag and signed " car " to him

he started to get excited and smile again.

we have been able to stay with Josh overnight - usually dh does the nights

and i do the days ... but, we have been lucky in that most of Josh's

hospitalisations have been expected (planned surgeries) ... another thing i

try and do is bring along the fav toys of the moment to add consistency ...

i was thinking maybe he would choose one as a 'cuddly' - but, so far the

only thing he has showed any particular favouritism to is the syringe and

feeding tube :0) !

{{{{hugs}}}} to you, and hoping you will be able to bring home soon

Jo

ds Ben, ds Josh CHaRGE'r uclbcp 16 months

----- Original Message ----- > About her crying when picked up, it's

actually mostly when

> approaching her in certain ways.

[Guest guest]

hi Rochel

you might like to try always touching her on the back of the

hand/foot/forehead (someplace that isn't going to have an iv and seems

natural to you both) ... just before you pick her up ... i feel that as she

is so obviously reasponding to certain things and approaches you may as well

have a signal between yourselves that she will correspond to mean " mum is

here, and nothing yuck is going to happen next "

i have also worried for Josh on occasion as he has had occasion to " shut

down " when in hospital and lots of procedures have been needed ... my mummy

instinct to grab him and run for the door gets a real battering when i am

also aware that he needs that hospital care! The good news is that as soon

as we are back home he comes back to himself very quickly ... in fact the

last stay as soon as i put his toys back in the bag and signed " car " to him

he started to get excited and smile again.

we have been able to stay with Josh overnight - usually dh does the nights

and i do the days ... but, we have been lucky in that most of Josh's

hospitalisations have been expected (planned surgeries) ... another thing i

try and do is bring along the fav toys of the moment to add consistency ...

i was thinking maybe he would choose one as a 'cuddly' - but, so far the

only thing he has showed any particular favouritism to is the syringe and

feeding tube :0) !

{{{{hugs}}}} to you, and hoping you will be able to bring home soon

Jo

ds Ben, ds Josh CHaRGE'r uclbcp 16 months

----- Original Message ----- > About her crying when picked up, it's

actually mostly when

> approaching her in certain ways.

[Guest guest]

Rochel,

Home is the best place. You will get to know everything there is to

know about . I never had any home nursing care for so I was it 24/7.

Exhaustion was a problem. We also had a 5 year old in Kindergarten when she was

born. Thank heavens these days most families can get care if they fight for it.

If and when returns to the hospital, you will be her anchor. It took me

a while to understand this when was tiny. By the time we were there for

her trach I would " stand up " to interns and residents that said, " this must be

done now " . If she was sleeping I would make them come back later. I wasn't

angry or irrate, just a " gentle giant " and they respected that. Her specialist

one time commended me for telling a resident " No " when it could wait. By the

time we were a few surgeries into her 27 the hospital knew that I wasn't a

" crazed parent " and would let me do things for her and be places I shouldn't

have been with . The staff ignored the " no parent's allowed " rule with us

most of the time. trusted me so much that when I was there she was calm

and cooperative with what ever needed to be done. She started being this way at

about a year old. She would sit still for me in the procedure room when other

childen with out a calm parent would have to be held down screaming, by a

couple of nurses. Not to say she didn't cry or fuss but she learned very early

that the less she fussed the less it hurt. I also was very honest. If she ask,

" Will it hurt? I said, " Yes, ( we used the 1 to 10 , smile to frown scale ) it

will be a what ever number I thought was honest. I sure hated telling her about

7 to 10 pains.

I too have carried on to long but on this list please know you are not alone.

Some one or many of us " have been there, done that "

I sure wish the internet had been around 19 years ago. I felt so alone back

then.

Lynn

Ohio

Re: Question about CHARGE and behavior

I'm sorry, I didn't mean to give the impression I was sitting around

biting my nails with worry about having behavior problems ;-)

About her crying when picked up, it's actually mostly when

approaching her in certain ways. When the nurse picks her up to

hand her to me she usually doesn't cry. If the nurse picks her up

to reposition her to take her temperature or some other procedure

she is accustomed to, she gets fussy. If the nurse approaches her

with a tube with that suctioning sound in the background she gets

hysterical. It's comforting in a way because I guess it means she

sees and/or hears well enough to know what is going on. But if she

is predisposed to autism or OCD, I can see how this kind of stress

could bring it on. I'm hoping I can create a more secure

environment at home for her.

Rochel

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

CHARGE Syndrome Foundation.

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

7th International

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

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Rochel,

Home is the best place. You will get to know everything there is to

know about . I never had any home nursing care for so I was it 24/7.

Exhaustion was a problem. We also had a 5 year old in Kindergarten when she was

born. Thank heavens these days most families can get care if they fight for it.

If and when returns to the hospital, you will be her anchor. It took me

a while to understand this when was tiny. By the time we were there for

her trach I would " stand up " to interns and residents that said, " this must be

done now " . If she was sleeping I would make them come back later. I wasn't

angry or irrate, just a " gentle giant " and they respected that. Her specialist

one time commended me for telling a resident " No " when it could wait. By the

time we were a few surgeries into her 27 the hospital knew that I wasn't a

" crazed parent " and would let me do things for her and be places I shouldn't

have been with . The staff ignored the " no parent's allowed " rule with us

most of the time. trusted me so much that when I was there she was calm

and cooperative with what ever needed to be done. She started being this way at

about a year old. She would sit still for me in the procedure room when other

childen with out a calm parent would have to be held down screaming, by a

couple of nurses. Not to say she didn't cry or fuss but she learned very early

that the less she fussed the less it hurt. I also was very honest. If she ask,

" Will it hurt? I said, " Yes, ( we used the 1 to 10 , smile to frown scale ) it

will be a what ever number I thought was honest. I sure hated telling her about

7 to 10 pains.

I too have carried on to long but on this list please know you are not alone.

Some one or many of us " have been there, done that "

I sure wish the internet had been around 19 years ago. I felt so alone back

then.

Lynn

Ohio

Re: Question about CHARGE and behavior

I'm sorry, I didn't mean to give the impression I was sitting around

biting my nails with worry about having behavior problems ;-)

About her crying when picked up, it's actually mostly when

approaching her in certain ways. When the nurse picks her up to

hand her to me she usually doesn't cry. If the nurse picks her up

to reposition her to take her temperature or some other procedure

she is accustomed to, she gets fussy. If the nurse approaches her

with a tube with that suctioning sound in the background she gets

hysterical. It's comforting in a way because I guess it means she

sees and/or hears well enough to know what is going on. But if she

is predisposed to autism or OCD, I can see how this kind of stress

could bring it on. I'm hoping I can create a more secure

environment at home for her.

Rochel

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

CHARGE Syndrome Foundation.

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

7th International

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

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!