karlee's neuro appt yesterday

[Guest guest]

Sorry to hear about Karlee. I will keep your little one, and your family in my prayers.

[Guest guest]

i just wanted to let ya'll know what the neuro said yesterday about

karlee. when we got in the exam room karlee was having alot of mouth

movements and one leg was jerking real bad, he came in and looked at

her and said he didnt think she was having seizures, i thought this

was what she was having for about 1 month. he sent us over to have an

eeg, we went back to him and he said it was not seizures, she was

having shrivers{?}, he then told us that was part of the disease. her

mri showed significant proggression since 1-8-04, they are new areas

of the brain that the disease has taken over,the frontal,parietal,and

basal ganglia. we are just heartbroken, we new that she had gotten

worse, but it really hits home when your doctor tells you, he doesnt

think she will survive past this year. he told us that he thought her

breathing sounded alot different from last month, i have noticed it

sounding different at times. the jerking is really hard on me, i

think it aggervates her. this is so hard for us to accept because she

is still so responsive and laughs at funny things that are said and

when she hears kaitlin and karson.

i just wanted to let ya'll know and see if you can give some kind of

hope.

thank you,

davonne, moma to karlee, 19mos complexI&IV, severe brain damage

[Guest guest]

--- I am so sorry to hear about Karlee. I will keep Karlee and your

family in my thoughts and prayers.

[Guest guest]

Hi, Davonne -

I'm so sorry that her MRI looked worse.

Do you mean muscle spasms, or maybe muscle fasciculations? Muscle spasms can be really painful. When 's get bad, we give her Valium to stop them. We also use Botox injections in the affected muscle groups every 6 months or so, and that helps as well. I don't know if you can do anything about fasciculations. Maybe someone with more experience can say whether the mito cocktail or any of its components helps?

I know that you already do - love her as much as you can. Doctors can try to predict (and it is better if they prepare you) but no one really knows what an individual child will do. My goals for are to keep her happy and comfortable, and I think those are good goals. It is wonderful that Karlee is so responsive and enjoys her life with you!

Kathy

karlee's neuro appt yesterday

i just wanted to let ya'll know what the neuro said yesterday about karlee. when we got in the exam room karlee was having alot of mouth movements and one leg was jerking real bad, he came in and looked at her and said he didnt think she was having seizures, i thought this was what she was having for about 1 month. he sent us over to have an eeg, we went back to him and he said it was not seizures, she was having shrivers{?}, he then told us that was part of the disease. her mri showed significant proggression since 1-8-04, they are new areas of the brain that the disease has taken over,the frontal,parietal,and basal ganglia. we are just heartbroken, we new that she had gotten worse, but it really hits home when your doctor tells you, he doesnt think she will survive past this year. he told us that he thought her breathing sounded alot different from last month, i have noticed it sounding different at times. the jerking is really hard on me, i think it aggervates her. this is so hard for us to accept because she is still so responsive and laughs at funny things that are said and when she hears kaitlin and karson. i just wanted to let ya'll know and see if you can give some kind of hope.thank you,davonne, moma to karlee, 19mos complexI & IV, severe brain damagePlease contact mito-owner with any problems or questions.

[Guest guest]

davonne,

I am so sorry that your appt. for Karlee was so difficult and so

filled with scary disappointing news. Don't, however, take these

words form the doc for scripture. has far outlived anyones

expectations. Everyday is a miracle and she does better everyday.I

know this may not be the case with Karlee and it has to be hard. My

thoughts and prayers are with you!

Dawn

[Guest guest]

Davonne-

My heart is breaking for you. Know that you are doing everything you can for

Karlee. Most importantly, you are loving her and taking great care of her.

She is blessed that the Lord chose you to be her mother.

I am keeping you all in my prayers.

Kim - Mom to and Lindsey - 2 1/2 Partial Complex I

>

>

> i just wanted to let ya'll know what the neuro said yesterday about

> karlee. when we got in the exam room karlee was having alot of mouth

> movements and one leg was jerking real bad, he came in and looked at

> her and said he didnt think she was having seizures, i thought this

> was what she was having for about 1 month. he sent us over to have an

> eeg, we went back to him and he said it was not seizures, she was

> having shrivers{?}, he then told us that was part of the disease. her

> mri showed significant proggression since 1-8-04, they are new areas

> of the brain that the disease has taken over,the frontal,parietal,and

> basal ganglia. we are just heartbroken, we new that she had gotten

> worse, but it really hits home when your doctor tells you, he doesnt

> think she will survive past this year. he told us that he thought her

> breathing sounded alot different from last month, i have noticed it

> sounding different at times. the jerking is really hard on me, i

> think it aggervates her. this is so hard for us to accept because she

> is still so responsive and laughs at funny things that are said and

> when she hears kaitlin and karson.

>

> i just wanted to let ya'll know and see if you can give some kind of

> hope.

>

> thank you,

>

> davonne, moma to karlee, 19mos complexI&IV, severe brain damage

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

I am so sorry you got such bad news. Just

continue to love her each and every day and do not be so confidant that she

will not live past the year. I do believe in miracles and I do not believe

doctors can predict things like this. Kids can really surprise us. I do

realize, however, how hard it is when the symptoms agree with the

progression and as a parent you know deep down inside how your child is doing

but still try to have hope. I will pray to God that you will have enough

strength to enjoy your daughter very much. Please do not linger on her

deterioration now (easier to say than do) but try hard to concentrate and enjoy

what she can do. You said she still laughs. What a blessing today. That can go

away so quickly. Now that my daughter is gone. I regret so much not enjoying

her when she could talk, laugh. Eat because I was too busy crying over what she

couldn’t do so well anymore in comparison to the day before. The reality

and loss of skills that come from mito

are the hardest thing in the WHOLE world to deal with for us parents. If I

could have 5 minutes with my daughter, I would not have spent so much time

feeling bad for her situation and spent more time hugging, kissing, treasuring and

loving my child, especially when she could still undertstand and communicate

even though she was weak , had tremors and could hardly walk. Every thing is

relative. Hang in there and God bless you

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: davonneatkins

Sent: Wednesday, June 09, 2004

1:03 PM

To: Mito

Subject: karlee's neuro appt yesterday

i just wanted to let ya'll know what the neuro

said yesterday about

karlee. when we got in the exam room karlee was

having alot of mouth

movements and one leg was jerking real bad, he

came in and looked at

her and said he didnt think she was having

seizures, i thought this

was what she was having for about 1 month. he sent

us over to have an

eeg, we went back to him and he said it was not

seizures, she was

having shrivers{?}, he then told us that was part

of the disease. her

mri showed significant proggression since 1-8-04,

they are new areas

of the brain that the disease has taken over,the

frontal,parietal,and

basal ganglia. we are just heartbroken, we new

that she had gotten

worse, but it really hits home when your doctor

tells you, he doesnt

think she will survive past this year. he told us

that he thought her

breathing sounded alot different from last month,

i have noticed it

sounding different at times. the jerking is really

hard on me, i

think it aggervates her. this is so hard for us to

accept because she

is still so responsive and laughs at funny things

that are said and

when she hears kaitlin and karson.

i just wanted to let ya'll know and see if you can

give some kind of

hope.

thank you,

davonne, moma to karlee, 19mos complexI & IV,

severe brain damage

Please

contact mito-owner with any problems or questions.

[Guest guest]

Davonne, I haven't been online in awhile. When I read your post, my

heart was breaking for you. Continue to love and hold Karlee. You

are in my prayers.

Geri-Anne and Wyatt, complex I-

-- In Mito , " davonneatkins " wrote:

>

>

> i just wanted to let ya'll know what the neuro said yesterday about

> karlee. when we got in the exam room karlee was having alot of

mouth

> movements and one leg was jerking real bad, he came in and looked

at

> her and said he didnt think she was having seizures, i thought this

> was what she was having for about 1 month. he sent us over to have

an

> eeg, we went back to him and he said it was not seizures, she was

> having shrivers{?}, he then told us that was part of the disease.

her

> mri showed significant proggression since 1-8-04, they are new

areas

> of the brain that the disease has taken over,the

frontal,parietal,and

> basal ganglia. we are just heartbroken, we new that she had gotten

> worse, but it really hits home when your doctor tells you, he

doesnt

> think she will survive past this year. he told us that he thought

her

> breathing sounded alot different from last month, i have noticed it

> sounding different at times. the jerking is really hard on me, i

> think it aggervates her. this is so hard for us to accept because

she

> is still so responsive and laughs at funny things that are said and

> when she hears kaitlin and karson.

>

> i just wanted to let ya'll know and see if you can give some kind

of

> hope.

>

> thank you,

>

> davonne, moma to karlee, 19mos complexI&IV, severe brain damage