Re: Amelie Neurological worries ! please help

[Guest guest]

Dear Lesley,

I've been thinking about Amelie constantly and following your updates and

hoping for positive news.

I don't really have any answers for you but it may be that she has been very

traumatised by everything that has happened over the last couple of weeks

and doesn't want to be touched etc.

I know it's not the same but after Jack had his heart surgery and was

ventilated for 8 days he seemed to be really angry with us for having put him

through it all and was very subdued for a day or two.

I really hope she starts to respond to your special touch soon and gives you

a huge big smile.

Hugs

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

[Guest guest]

dear Lesley, my guess is Amelie is utterly exhausted, and just doesn't have

the ability to " cope " with any extra stimulation right now. I remember

had only the strength to breath-and to keep going-no strength left over

to

respond at all. The only other thing that comes to mind is the possible

irritation to her internally that may have come from intubations, and feeding

methods, but anything serious should present itself as fever, or elevated white

count,blood in urine or stool. If her lungs have fluid-then its so

exhausting to breath. I wouldn't worry about neurological. was a new

child

once she could breath, thats really when she was born.to us. She's not mad at

you-I've had those thoughts before too, and and I are typical Mom and

teenage daughter now-she's my best friend, and she also thinks she knows

better than Mom lots of times. Pretty " ordinary " stuff. She might be trying to

tell you how tough it is for her right now-or it could be just the over-stim.

Everybody's praying really hard. I like to think that when she's resting

the angels are comforting her,and helping her and that it is good for her to

rest. Peace,

[Guest guest]

Lesley -

I have been following your posts about Amelie - - my heart aches for all that

you, Amelie and your family are going through. I hope you find some comfort

in all of our responses and feel the strength and support from this list.

Although I of course cannot be certain what her behaviors mean, I am sure

that she has been traumatized by her experiences. She's been sedated for a long

period of time, she has been invaded by tubes in her mouth and suctioning and

hands on her at all hours of the day... it's so hard for us to really know how

much our little ones take in during those times.

My own experience with my daughter, Gracelyn, was very similar following

three very scary weeks on the vent last year after complications from heart

surgery. I don't know if this is true for Amelie, but Gracie went through

serious

withdrawls from the sedation. She cried and cried, was agitated by all touch

and was not one bit the baby she was prior. The doctors were receptive to my

fears regarding her behavior to an extent, but I really had to push that I

thought she was reacting to coming off of that sedation too quickly. Finally

they

agreed and took her down VERY slowly... somewhat treating her like an addict

newborn. It worked.

It's something to consider... even the slightest decrease in the meds would

affect her... perhaps that's playing a part in how Amelie is feeling. What you

describe sounds very much like Gracie. Definitely worth the conversation

with the doctors and nurses - - our kids, remember, react very differently than

" typical " kids to sedation.

We continue to think of you all and send positive thoughts your way.

Thank you for taking the time to keep us all updated during this difficult

time.

love,

Kristi

mommy to Gracie, 2 1/2

[Guest guest]

Dear Kristi, That was genius!

It felt like an " AH-HAH! moment when I read it . That has to be an extremely

helpful piece of knowledge. Lesley, I'd call the nurses and read them what

Kristi said. It sure sounds like a

possible cause, and one to share vigorously. linda

[Guest guest]

Dearest Lovely Lesley-

I think that barring profound severe neurological damage you wouldn't really

see and signs of damage..... and I am eternally optimistic that you will

never notice any - our children befuddle many of the professional experts -

who are obligated to tell us parents the entire spectrum of

possibilities.....

As far as her crying - my heart breaks for your aching arms. My gut feeling

is that her poor little body has been through so much that she just needs to

stabilize and integrate.... and that with coaxing and tenderness she will

soon again recognize the haven in your arms. Crying though is certainly a

sign of a fighting strong spirit and body - for what comfort that is worth.

Thinking of you and keeping you close in our hearts-

praying and wishing for better news for you soon-

love-

yuka

Amelie Neurological worries ! please help

> Dear All

>

> Thanks for all the prayers coming through to us, very much needed.

>

> I am concerned about the lack of oxygen thing, is it normal for her

> to not be herself, what would be typical signs of a child with lack

> of oxygen I asked the nurse but she said its early yet! for example

>

> she never cries at all never! (only when the docs do something she

> might have a little one but they are rare :- she hasn't stopped

> crying since new years eve, especially if you attempt to touch her

> at all even to do her nappy, wipe her face or move her covers.

>

> we have a cue to touch her and she always smiles when you touch her

> somewhere special, she just cries when we do our special cues.

>

> she smiles a lot at home - no smile yet and its been two days off

> the vent.

>

> I feel really helpless,

> I tried to have a little hold and she just cried until I put her

> back then she calmed down almost as if she doesn't like us anymore,

> feel really down and very worried, before this happened she had

> started to copy and clap hands etc which is great for a child who is

> profound deaf and registered blind, but at the moment she cant be

> bothered with us at all.

>

> What do you think?

>

> Love Lesley x

[Guest guest]

Lesley-

It sure does sound like Amelie is distressed, to say the least. It must be

immensely frustrating to feel her distress and not know if the doctors and

nurses are " getting it " . She's so young and yet you are still the mama who

knows her signals better than anyone. I sincerely hope that she is just fed

up with it all and is not trying to tell you that there's something else

amiss. Keep watching and following your Mama's instinct.

Can't imagine how helpless you are feeling.

I have a bit of understanding for the feeling when your child doesn't

respond to your typical comfort measures. Aubrie didn't like to be held

when upset. She prefered to rock and comfort herself. We tried to balance

her needs with ours and respect her ways. I would hold her and cuddle her

whenever she'd allow it to encourage her acceptance of it. But when she was

very upset and needed her own space to help herself, we gave her that. She

is now the biggest cuddle bug ever. But she still needs to be alone at

times.

Amelie's little system must be in a jumble with all she's been through.

There may be nothing you can do now, but later you can help her to cope and

get herself back " together " . Again, how frustrating to watch her in

distress and going thru so many difficult things and be unable to step in a

stop it. Wouldn't you love to have a magic wand to make it all go away for

her??

She will know your love even in the midst of it all. I've had to submit

Aubrie to painful and difficult procedures, but she never sees me as the bad

guy. She knows that I'd stop it all if I could. Since I can't, I am there

to make it as easy as I can and to help her thru as best as I can. Amelie

will know the same.

Hugs

Michele W

Aubrie's mom

[Guest guest]

Lesley,

I agree with Yuka. Amelie's job right now is to get better. Her

whole mind and body are trying to work to feel better. I think it

is still really early. 2 days off a vent is a lot for her little

body to get used to.

Our little Makenna didn't smile or laugh at us for close to a year.

I was really worried about brain damage also, we couldn't make her

laugh or smile, no matter what. She finally started to smile but

laughing at funny things didn't come til much later. She started

laughing at physical humor and now is more typical with what she

finds funny. Looking back I really think all they can handle is

living and healing. Makenna's big change came after her trach came

out. She is almost five now and my mom went on vacation with us and

said she has never seen Makenna laugh so much or be so happy.

You and Amelie are in my prayers. Stay strong!

Thinking of you,

, mom to Makenna 41/2

>

> Dearest Lovely Lesley-

>

> I think that barring profound severe neurological damage you

wouldn't really

> see and signs of damage..... and I am eternally optimistic that

you will

> never notice any - our children befuddle many of the professional

experts -

> who are obligated to tell us parents the entire spectrum of

> possibilities.....

>

> As far as her crying - my heart breaks for your aching arms. My

gut feeling

> is that her poor little body has been through so much that she

just needs to

> stabilize and integrate.... and that with coaxing and tenderness

she will

> soon again recognize the haven in your arms. Crying though is

certainly a

> sign of a fighting strong spirit and body - for what comfort that

is worth.

>

> Thinking of you and keeping you close in our hearts-

> praying and wishing for better news for you soon-

>

> love-

>

> yuka

>

> Amelie Neurological worries ! please help

>

>

> > Dear All

> >

> > Thanks for all the prayers coming through to us, very much

needed.

> >

> > I am concerned about the lack of oxygen thing, is it normal for

her

> > to not be herself, what would be typical signs of a child with

lack

> > of oxygen I asked the nurse but she said its early yet! for

example

> >

> > she never cries at all never! (only when the docs do something

she

> > might have a little one but they are rare :- she hasn't stopped

> > crying since new years eve, especially if you attempt to touch

her

> > at all even to do her nappy, wipe her face or move her covers.

> >

> > we have a cue to touch her and she always smiles when you touch

her

> > somewhere special, she just cries when we do our special cues.

> >

> > she smiles a lot at home - no smile yet and its been two days off

> > the vent.

> >

> > I feel really helpless,

> > I tried to have a little hold and she just cried until I put her

> > back then she calmed down almost as if she doesn't like us

anymore,

> > feel really down and very worried, before this happened she had

> > started to copy and clap hands etc which is great for a child

who is

> > profound deaf and registered blind, but at the moment she cant be

> > bothered with us at all.

> >

> > What do you think?

> >

> > Love Lesley x

>

[Guest guest]

Maybe she is just home sick and doesnt want to be there anymore. I

know when I was in the hospital a long time ago I was so sick of

being there. Also all those doctors and nurses pocking her and doing

differnet things to her all the time. Maybe just give it time, if

she doesnt seem better soon I would make the doctors look into it,

we always have a hard time speaking up because they are the doctors

and we think they know it all but we are the parents and we know

whats normal and whats not.

I will keep praying for you and Amelie.

Hugs,

Crystal and Eva (8 month charger)

>

> Dear All

>

> Thanks for all the prayers coming through to us, very much needed.

>

> I am concerned about the lack of oxygen thing, is it normal for

her

> to not be herself, what would be typical signs of a chld with lack

> of oxygen I asked the nurse but she said its early yet! for example

>

> she never cries at all never! (only when the docs do somthing she

> might have a little one but they are rare :- she hasnt stopped

> crying since new years eve, especially if you attempt to touch her

> at all even to do her nappy, wipe her face or move her covers.

>

> we have a cue to touch her and she always smiles when you touch

her

> somewhere special, she just cries when we do our special cues.

>

> she smiles a lot at home - no smile yet and its been two days off

> the vent.

>

> I feel really helpless,

> I tried to have a little hold and she just cried until I put her

> back then she calmed down almost as if she doesnt like us anymore,

> feel really down and very worried, before this happened she had

> started to copy and clap hands etc which is great for a child who

is

> profound deaf and registered blind, but at the moment she cant be

> bothered with us at all.

>

> What do you think?

>

> Love Lesley x

>

[Guest guest]

Lesley,

This EXACT thing happened to us with Kennedy. At about 2 months of age she

never wanted to be held, the only solace she found was alone and in her bed.

Our theory was that it was her " safe place " and when people picked her up,

something bad was going to happen so she always wanted to be in her bed. One of

the nurses who'd been around for about 20 yrs said " you need to start picking

her up whether she likes it or not; she needs the contact and she must get over

this " . It almost seemed mean to do it (take her out of bed) at the time, but we

perserved and eventually she broke through and began to enjoy us holding her.

It was an awful time but it did pass.

Lots of love and thoughts coming your way,

Lesley Chan wrote:

Dear All

Thanks for all the prayers coming through to us, very much needed.

I am concerned about the lack of oxygen thing, is it normal for her

to not be herself, what would be typical signs of a chld with lack

of oxygen I asked the nurse but she said its early yet! for example

she never cries at all never! (only when the docs do somthing she

might have a little one but they are rare :- she hasnt stopped

crying since new years eve, especially if you attempt to touch her

at all even to do her nappy, wipe her face or move her covers.

we have a cue to touch her and she always smiles when you touch her

somewhere special, she just cries when we do our special cues.

she smiles a lot at home - no smile yet and its been two days off

the vent.

I feel really helpless,

I tried to have a little hold and she just cried until I put her

back then she calmed down almost as if she doesnt like us anymore,

feel really down and very worried, before this happened she had

started to copy and clap hands etc which is great for a child who is

profound deaf and registered blind, but at the moment she cant be

bothered with us at all.

What do you think?

Love Lesley x

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@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

hmmmmmmmmmmmmmm isnt it annoying when you cant find answers i can never find

answers to these thing like y is it thzat i can have a great time with

friends when soem of you are having so much troubles lol i know its godo for

us to have great times when we can so i shouldnt complain should i oh well

godo luck with what ever they decide im back on line so reading my way

through and keeping up with it all again just hope it gets sortecd befor i

go the respite course then ill get really behind oh well i allwyas think of

you al no matter where i am lol at midnight saturday i said a silent hapy

new year prayer for all the chargers it didnt work for amelie argthhhhhhhh

lol hugs ellen

>

> Lesley,

> This EXACT thing happened to us with Kennedy. At about 2 months of age

> she never wanted to be held, the only solace she found was alone and in her

> bed. Our theory was that it was her " safe place " and when people picked her

> up, something bad was going to happen so she always wanted to be in her

> bed. One of the nurses who'd been around for about 20 yrs said " you need to

> start picking her up whether she likes it or not; she needs the contact and

> she must get over this " . It almost seemed mean to do it (take her out of

> bed) at the time, but we perserved and eventually she broke through and

> began to enjoy us holding her. It was an awful time but it did pass.

> Lots of love and thoughts coming your way,

>

>

> Lesley Chan wrote:

> Dear All

>

> Thanks for all the prayers coming through to us, very much needed.

>

> I am concerned about the lack of oxygen thing, is it normal for her

> to not be herself, what would be typical signs of a chld with lack

> of oxygen I asked the nurse but she said its early yet! for example

>

> she never cries at all never! (only when the docs do somthing she

> might have a little one but they are rare :- she hasnt stopped

> crying since new years eve, especially if you attempt to touch her

> at all even to do her nappy, wipe her face or move her covers.

>

> we have a cue to touch her and she always smiles when you touch her

> somewhere special, she just cries when we do our special cues.

>

> she smiles a lot at home - no smile yet and its been two days off

> the vent.

>

> I feel really helpless,

> I tried to have a little hold and she just cried until I put her

> back then she calmed down almost as if she doesnt like us anymore,

> feel really down and very worried, before this happened she had

> started to copy and clap hands etc which is great for a child who is

> profound deaf and registered blind, but at the moment she cant be

> bothered with us at all.

>

> What do you think?

>

> Love Lesley x

>

>

>

>

>

>

>

>

>

> 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@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

I have also been following your posts about Amelie and sending prayers your

way constantly. I just read the post from Kristi and that is the same thing that

happened with . The nurses were having to give her two types of meds to

keep her sedated and paralyzed every hour on the hour when she was on the vent.

She reacted the same way when she came off the vent and they told me that it was

due to all the meds that she was on. They said that she was getting a lot more

than most kids her age would need. I remember feeling so helpless and begging

them to just give her some more of the meds to take the edge off. Unfortunately

for us, the doctor in the ICU during that time did not believe in weaning them

off. (you don't know how bad I wanted to give her all those meds and just take

her off of them to see how she liked it) It took a few days, but she did get

back to normal. I also think that these things tend to traumatize them as well.

never used to have a problem going in for

tests or anything and now if you try to lay her down on a table, she starts

fighting. It could be her age, but I think that she really knows what she went

through to some extent.

My heart goes out to you and your family for all you have to go through right

now. Amelie is a true fighter and she has proven that to everyone with all of

this. I will continue to pray for you, Amelie and your family.

Lee

Mom to 2 1/2 yrs.

kristiswann@... wrote:

Lesley -

I have been following your posts about Amelie - - my heart aches for all that

you, Amelie and your family are going through. I hope you find some comfort

in all of our responses and feel the strength and support from this list.

Although I of course cannot be certain what her behaviors mean, I am sure

that she has been traumatized by her experiences. She's been sedated for a long

period of time, she has been invaded by tubes in her mouth and suctioning and

hands on her at all hours of the day... it's so hard for us to really know how

much our little ones take in during those times.

My own experience with my daughter, Gracelyn, was very similar following

three very scary weeks on the vent last year after complications from heart

surgery. I don't know if this is true for Amelie, but Gracie went through

serious

withdrawls from the sedation. She cried and cried, was agitated by all touch

and was not one bit the baby she was prior. The doctors were receptive to my

fears regarding her behavior to an extent, but I really had to push that I

thought she was reacting to coming off of that sedation too quickly. Finally

they

agreed and took her down VERY slowly... somewhat treating her like an addict

newborn. It worked.

It's something to consider... even the slightest decrease in the meds would

affect her... perhaps that's playing a part in how Amelie is feeling. What you

describe sounds very much like Gracie. Definitely worth the conversation

with the doctors and nurses - - our kids, remember, react very differently than

" typical " kids to sedation.

We continue to think of you all and send positive thoughts your way.

Thank you for taking the time to keep us all updated during this difficult

time.

love,

Kristi

mommy to Gracie, 2 1/2