Re:

[Guest guest]

I am so sorry , I hope I didn't offend you. That was not my intention. I

just wanted to clear up my reasons and I mean( MY) reasons for wanting to know.

I am not being judgmental. I think what it is, is that I really feel for all

these women and I don't want them to ever start blaming themselves. So when you

made the comment about " blaming yourselves " I heard that comment way to often

by people who say to me " why are you trying to find out? " " you are going to

blame yourself " . They just can't understand why I spend so much time

searching.

This is what makes me upset. If I can't get them to see my reasons, they just

think that I am not coping with her death. WELL DUH!!! Of course , you will

never get over the death of your child. It just doesn't get any worse.

All it is that much closer to a closure. That is the word I am looking for

CLOSURE>

If I never find out, than I know in my heart I have tried everything I could

and I will stop wondering. My problem is that I know too much about blood

tests. ( Lab Tech) So I will try them all and know I gave it my best shot.

So once again, I am truly sorry for stirring things up.

Carolyn mom angel SAbrina and 5 yr old Ciara ( going to Disneyland October 8th,

first time and very excited )

Dont worry , your intention was clear. You are such a caring person, and I

am sure that we all saw the empathy in your post. You always mean well and you

are such an encourager. Thanks for being you, and for sharing the way you do. We

all need people like you.

(Hannah's mum)

[Guest guest]

I am so sorry , I hope I didn't offend you. That was not my intention. I

just wanted to clear up my reasons and I mean( MY) reasons for wanting to know.

I am not being judgmental. I think what it is, is that I really feel for all

these women and I don't want them to ever start blaming themselves. So when you

made the comment about " blaming yourselves " I heard that comment way to often

by people who say to me " why are you trying to find out? " " you are going to

blame yourself " . They just can't understand why I spend so much time

searching.

This is what makes me upset. If I can't get them to see my reasons, they just

think that I am not coping with her death. WELL DUH!!! Of course , you will

never get over the death of your child. It just doesn't get any worse.

All it is that much closer to a closure. That is the word I am looking for

CLOSURE>

If I never find out, than I know in my heart I have tried everything I could

and I will stop wondering. My problem is that I know too much about blood

tests. ( Lab Tech) So I will try them all and know I gave it my best shot.

So once again, I am truly sorry for stirring things up.

Carolyn mom angel SAbrina and 5 yr old Ciara ( going to Disneyland October 8th,

first time and very excited )

Dont worry , your intention was clear. You are such a caring person, and I

am sure that we all saw the empathy in your post. You always mean well and you

are such an encourager. Thanks for being you, and for sharing the way you do. We

all need people like you.

(Hannah's mum)

[Guest guest]

In a message dated 10/1/02 11:41:51 PM Central Daylight Time,

pettifamily@... writes:

>

U didn't offend me sweet lady & I can't blame you at all for wanting to know

what the causes were. I just knew that my wife & I both went into a big

depression dwelling on who, what & where. I was just trying to caution

others that it's a slippery slope. I'm not the best in expressing myself the

clearest anymore....<hugs> Love to all.

KKS

[Guest guest]

In a message dated 10/1/02 11:41:51 PM Central Daylight Time,

pettifamily@... writes:

>

U didn't offend me sweet lady & I can't blame you at all for wanting to know

what the causes were. I just knew that my wife & I both went into a big

depression dwelling on who, what & where. I was just trying to caution

others that it's a slippery slope. I'm not the best in expressing myself the

clearest anymore....<hugs> Love to all.

KKS

[Guest guest]

-

Thank you for your reply. My dad was 65, and had been diagnosed with

Diffuse Lewy Body Disease (also known as LBD) 5 yrs ago. Our dads were

so young...too young. You are so right when you said it is a strange,

debilitating disease. So many similarities from person to person, yet

so different. Also, thank you for wishing me well. Best wishes to you

and prayers being sent your way!

Sandie

Des Moines, IA

[Guest guest]

Dear , I will be thinking of you all this weekend, as is extubated.

Hoping all goes well with the pheno reduction, and praying for a safe return to

wakefulness and fewer seizures for her.

Hugs

(Hannah's mum, Australia)

[Guest guest]

Dear , I will be thinking of you all this weekend, as is extubated.

Hoping all goes well with the pheno reduction, and praying for a safe return to

wakefulness and fewer seizures for her.

Hugs

(Hannah's mum, Australia)

[Guest guest]

Wow, what a generous compliment. You are welcome, but really all I did

was pray. Again, testimony that there is power in prayer. Praises to

God for giving you the strength and courage it took to return to this

group, where you are so valued and needed. The honor is all mine in

calling you friend. :-))

Sandie

[Guest guest]

,

Can you stay in the hospital for the month needed to see if the VNS helps,

could that along with the Keto diet maybe get control of things. I can't

image how hard this is for you. My thoughts and prayers are with you and

your family.

and Kennedy(3yrs.,pmg)

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject:

>Date: Mon, 21 Oct 2002 02:07:09 -0000

>

> is in her 9th week in the ICU at Miami Children's.

>

>She is slowly being weaned off of her Pentobarbital " coma " which

>never stopped her seizures during 2 weeks on the drug. You couldn't

>see them visibly, but you could see them on the EEG.

>

>She is now down to 25 mg. hour of the Pentobarbital, still on the

>ventilator, and visibly seizing every 15 minutes. She is still on

>Lamictal 100 mg/day and Clobazam (15 mg/day)- - is 10kg--

>through a nasoduodenal tube( these are the latest of a whole string

>of drugs which have been tried).

>

>We had the VNS placed on Thursday, and tried the ketogenic diet a

>couple of months ago. We are now placed in the position of deciding

>whether to take her home like this (seizing 4 times an hour with no

>awake normal time ever) or stay in the hospital on ventilator

>requiring doses of medication, or letting go during one of her

>stop-breathing seizures. We know the VNS can take months to work.

>We don't know how she will survive those months unless we spend them

>ambu-bagging her back to life daily.

>

>I can deal with her seizures as long as she has some quality of

>life: ie. time that she can smile, look around, and somewhat

>resemble the person she was back in April. I can not deal with her

>body being ravaged by seizures which eliminate the person I know

>that she is.

>

>I know a lot of you have kids with difficult seizures. What are

>your thoughts? How have you handled these situations?

>

>Thanks in advance.

>

>Sincerely,

> Bivens

>

>

>

>

>

>

[Guest guest]

,

Can you stay in the hospital for the month needed to see if the VNS helps,

could that along with the Keto diet maybe get control of things. I can't

image how hard this is for you. My thoughts and prayers are with you and

your family.

and Kennedy(3yrs.,pmg)

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject:

>Date: Mon, 21 Oct 2002 02:07:09 -0000

>

> is in her 9th week in the ICU at Miami Children's.

>

>She is slowly being weaned off of her Pentobarbital " coma " which

>never stopped her seizures during 2 weeks on the drug. You couldn't

>see them visibly, but you could see them on the EEG.

>

>She is now down to 25 mg. hour of the Pentobarbital, still on the

>ventilator, and visibly seizing every 15 minutes. She is still on

>Lamictal 100 mg/day and Clobazam (15 mg/day)- - is 10kg--

>through a nasoduodenal tube( these are the latest of a whole string

>of drugs which have been tried).

>

>We had the VNS placed on Thursday, and tried the ketogenic diet a

>couple of months ago. We are now placed in the position of deciding

>whether to take her home like this (seizing 4 times an hour with no

>awake normal time ever) or stay in the hospital on ventilator

>requiring doses of medication, or letting go during one of her

>stop-breathing seizures. We know the VNS can take months to work.

>We don't know how she will survive those months unless we spend them

>ambu-bagging her back to life daily.

>

>I can deal with her seizures as long as she has some quality of

>life: ie. time that she can smile, look around, and somewhat

>resemble the person she was back in April. I can not deal with her

>body being ravaged by seizures which eliminate the person I know

>that she is.

>

>I know a lot of you have kids with difficult seizures. What are

>your thoughts? How have you handled these situations?

>

>Thanks in advance.

>

>Sincerely,

> Bivens

>

>

>

>

>

>

[Guest guest]

Dear

How my heart goes out to you, as you face some of the most difficult choices you

will ever have to make. I can totally understand the possibility of letting

go when you are considering her quality of life. At times I have

considered this very seriously for Hannah too, and still do as her condition

slowly deteriorates. There is such a huge part of us that wants to keep on going

and to try everything, and perhaps it wont be until you have done all those

things that you will see clearly if/when to allow her to go.

I dont know what to advise you, because we dont walk the same path, only a

similar one. Hannah has some days where she is not really conscious because she

has so many seizures, and those days are so hard to bear because there is so

little quality, but then she is fortunate to have some days when she can respond

with smiles. More recently she has had much trouble maintaining her airway, and

there have been many days when I have honestly wondered how much longer she has

with us, and some days I find myself hoping she will be taken, because I cannot

stand the pain of seeing her struggle with life like this.

Right now I have tears for you streaming down my face, and wish I could just be

there to hold you, and to see and kiss her. I so wish I had an answer for

you, but all I can offer is empathy, and understanding from the bottom of my

heart. I am so sorry you are having to endure this.

Love and hugs

(Hannah's mum, Australia)

----- Original Message -----

I can deal with her seizures as long as she has some quality of

life: ie. time that she can smile, look around, and somewhat

resemble the person she was back in April. I can not deal with her

body being ravaged by seizures which eliminate the person I know

that she is.

I know a lot of you have kids with difficult seizures. What are

your thoughts? How have you handled these situations?

[Guest guest]

Dear

How my heart goes out to you, as you face some of the most difficult choices you

will ever have to make. I can totally understand the possibility of letting

go when you are considering her quality of life. At times I have

considered this very seriously for Hannah too, and still do as her condition

slowly deteriorates. There is such a huge part of us that wants to keep on going

and to try everything, and perhaps it wont be until you have done all those

things that you will see clearly if/when to allow her to go.

I dont know what to advise you, because we dont walk the same path, only a

similar one. Hannah has some days where she is not really conscious because she

has so many seizures, and those days are so hard to bear because there is so

little quality, but then she is fortunate to have some days when she can respond

with smiles. More recently she has had much trouble maintaining her airway, and

there have been many days when I have honestly wondered how much longer she has

with us, and some days I find myself hoping she will be taken, because I cannot

stand the pain of seeing her struggle with life like this.

Right now I have tears for you streaming down my face, and wish I could just be

there to hold you, and to see and kiss her. I so wish I had an answer for

you, but all I can offer is empathy, and understanding from the bottom of my

heart. I am so sorry you are having to endure this.

Love and hugs

(Hannah's mum, Australia)

----- Original Message -----

I can deal with her seizures as long as she has some quality of

life: ie. time that she can smile, look around, and somewhat

resemble the person she was back in April. I can not deal with her

body being ravaged by seizures which eliminate the person I know

that she is.

I know a lot of you have kids with difficult seizures. What are

your thoughts? How have you handled these situations?

[Guest guest]

In a message dated 10/20/02 9:06:35 PM Central Daylight Time, ajb@...

writes:

> Sincerely,

> Bivens

>

>

>

,

I read u'r post @ 6 am & have cried & been praying for her all morning.

I've been thinking hard of what to say.. & what I'd do if it was me. <hugs>

Don't sell her resolve & prayers short. Give her ample time to " get " used to

the meds & the diet, everyone's body is different. I'd give her time till

" You " feel at ease with the decision about the life support. I want you to

know I & my family love you & will be there for you when should you have to

make the decision. <big tight hug> We love you & will be praying even harder

for . You all have been on our minds all day everyday.

With great love & empathy,

K. & family

[Guest guest]

In a message dated 10/20/02 9:06:35 PM Central Daylight Time, ajb@...

writes:

> Sincerely,

> Bivens

>

>

>

,

I read u'r post @ 6 am & have cried & been praying for her all morning.

I've been thinking hard of what to say.. & what I'd do if it was me. <hugs>

Don't sell her resolve & prayers short. Give her ample time to " get " used to

the meds & the diet, everyone's body is different. I'd give her time till

" You " feel at ease with the decision about the life support. I want you to

know I & my family love you & will be there for you when should you have to

make the decision. <big tight hug> We love you & will be praying even harder

for . You all have been on our minds all day everyday.

With great love & empathy,

K. & family

[Guest guest]

Glad to hear that is improving seizure wise, but so sad to hear she has so

much still not going well. These kids battle so much for such basic things in

life. Hope the VNS is a success and that she continues to improve with sz

control, and hope too that oral intake will not be difficult after so long.

Gosh, she has endured so much, and so have you as you watched all that has

happened to her. These last couple of days watching Hannah struggle in traction

and with her respiratory difficulties has drained me emotionally, and I often

think of the many weeks that you and have suffered.

Take care , and give a big gentle hugs from me.

(Hannah's mum, Australia)

[Guest guest]

Dear ,

As you might expect from living this for 4 long years, 's respite from

seizures ended today, and she resumed her every 15 minute seizing again.

The intensivist at the hospital said that at this point, and I will

call the shots. He is willing to discontinue her antibiotics (in spite of

104 fevers), discontinue her anticonvulsants, send her home on IV drugs, or

send her home on nothing.

I'm guessing that doesn't speak for great optimism on his part.

We are going to take her home I believe. We will continue her antibiotics

and we will try some new anticonvulsants.

I believe we will discontinue resuscitation after a bit at home. I want her

to sleep in her (my) bed some. I want her to have a real bath instead of a

sponge bath, and I want her to feel a few days of no needles, no tubes; just

hugs and warmth and comfort.

Monday starts her 10th week. and I have both agreed this will be her

last hospitalization for this problem. We will not make her endure this

again.

I hope things quickly improve for Hannah. I suspect she has already paid

her dues many a time over.

Love,

Re:

>

>

> Glad to hear that is improving seizure wise, but so sad to hear she

has so much still not going well. These kids battle so much for such basic

things in life. Hope the VNS is a success and that she continues to improve

with sz control, and hope too that oral intake will not be difficult after

so long.

>

> Gosh, she has endured so much, and so have you as you watched all that has

happened to her. These last couple of days watching Hannah struggle in

traction and with her respiratory difficulties has drained me emotionally,

and I often think of the many weeks that you and have suffered.

>

> Take care , and give a big gentle hugs from me.

>

> (Hannah's mum, Australia)

>

>

>

[Guest guest]

Dear ,

As you might expect from living this for 4 long years, 's respite from

seizures ended today, and she resumed her every 15 minute seizing again.

The intensivist at the hospital said that at this point, and I will

call the shots. He is willing to discontinue her antibiotics (in spite of

104 fevers), discontinue her anticonvulsants, send her home on IV drugs, or

send her home on nothing.

I'm guessing that doesn't speak for great optimism on his part.

We are going to take her home I believe. We will continue her antibiotics

and we will try some new anticonvulsants.

I believe we will discontinue resuscitation after a bit at home. I want her

to sleep in her (my) bed some. I want her to have a real bath instead of a

sponge bath, and I want her to feel a few days of no needles, no tubes; just

hugs and warmth and comfort.

Monday starts her 10th week. and I have both agreed this will be her

last hospitalization for this problem. We will not make her endure this

again.

I hope things quickly improve for Hannah. I suspect she has already paid

her dues many a time over.

Love,

Re:

>

>

> Glad to hear that is improving seizure wise, but so sad to hear she

has so much still not going well. These kids battle so much for such basic

things in life. Hope the VNS is a success and that she continues to improve

with sz control, and hope too that oral intake will not be difficult after

so long.

>

> Gosh, she has endured so much, and so have you as you watched all that has

happened to her. These last couple of days watching Hannah struggle in

traction and with her respiratory difficulties has drained me emotionally,

and I often think of the many weeks that you and have suffered.

>

> Take care , and give a big gentle hugs from me.

>

> (Hannah's mum, Australia)

>

>

>

[Guest guest]

Dear ,

As you might expect from living this for 4 long years, 's respite from

seizures ended today, and she resumed her every 15 minute seizing again.

The intensivist at the hospital said that at this point, and I will

call the shots. He is willing to discontinue her antibiotics (in spite of

104 fevers), discontinue her anticonvulsants, send her home on IV drugs, or

send her home on nothing.

I'm guessing that doesn't speak for great optimism on his part.

We are going to take her home I believe. We will continue her antibiotics

and we will try some new anticonvulsants.

I believe we will discontinue resuscitation after a bit at home. I want her

to sleep in her (my) bed some. I want her to have a real bath instead of a

sponge bath, and I want her to feel a few days of no needles, no tubes; just

hugs and warmth and comfort.

Monday starts her 10th week. and I have both agreed this will be her

last hospitalization for this problem. We will not make her endure this

again.

I hope things quickly improve for Hannah. I suspect she has already paid

her dues many a time over.

Love,

Re:

>

>

> Glad to hear that is improving seizure wise, but so sad to hear she

has so much still not going well. These kids battle so much for such basic

things in life. Hope the VNS is a success and that she continues to improve

with sz control, and hope too that oral intake will not be difficult after

so long.

>

> Gosh, she has endured so much, and so have you as you watched all that has

happened to her. These last couple of days watching Hannah struggle in

traction and with her respiratory difficulties has drained me emotionally,

and I often think of the many weeks that you and have suffered.

>

> Take care , and give a big gentle hugs from me.

>

> (Hannah's mum, Australia)

>

>

>

[Guest guest]

Well welcome Kims Sister

It is nice to meet you, online. I looked up Kim's phone number and

almost called her today. Your family has been in my thoughts a lot

lately. As always, keeping you, Kim, your dad, and family in my

prayers. There is definate power in prayer...hope you are feeling His

hugs.

Sandie

[Guest guest]

Well welcome Kims Sister

It is nice to meet you, online. I looked up Kim's phone number and

almost called her today. Your family has been in my thoughts a lot

lately. As always, keeping you, Kim, your dad, and family in my

prayers. There is definate power in prayer...hope you are feeling His

hugs.

Sandie

[Guest guest]

In a message dated 10/26/02 8:56:58 PM Central Standard Time, ajb@...

writes:

> I want her

> to sleep in her (my) bed some. I want her to have a real bath instead of a

> sponge bath, and I want her to feel a few days of no needles, no tubes;

> just

> hugs and warmth and comfort.

>

That's what you should do , we will be thinking of you & praying for

.

Give that precious baby a hug & a smooch from us.

, Toni & Cody

[Guest guest]

,

So sorry to hear that 's seizures are not getting any better, I hope

some of the new meds help. My thoughts and prayers are with you and your

family.

Keep us updated.

and Kennedy(3yrs.,pmg)

>

>Reply-To: polymicrogyria

>To: <polymicrogyria >

>Subject: Re: Re:

>Date: Sat, 26 Oct 2002 22:09:49 -0400

>

>Dear ,

>As you might expect from living this for 4 long years, 's respite from

>seizures ended today, and she resumed her every 15 minute seizing again.

>The intensivist at the hospital said that at this point, and I will

>call the shots. He is willing to discontinue her antibiotics (in spite of

>104 fevers), discontinue her anticonvulsants, send her home on IV drugs, or

>send her home on nothing.

>I'm guessing that doesn't speak for great optimism on his part.

>We are going to take her home I believe. We will continue her antibiotics

>and we will try some new anticonvulsants.

>I believe we will discontinue resuscitation after a bit at home. I want

>her

>to sleep in her (my) bed some. I want her to have a real bath instead of a

>sponge bath, and I want her to feel a few days of no needles, no tubes;

>just

>hugs and warmth and comfort.

>Monday starts her 10th week. and I have both agreed this will be her

>last hospitalization for this problem. We will not make her endure this

>again.

>I hope things quickly improve for Hannah. I suspect she has already paid

>her dues many a time over.

>Love,

>

_________________________________________________________________

Get a speedy connection with MSN Broadband.  Join now!

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[Guest guest]

Hi , and welcome to the group. This group has been a great help to my

family. I hope it will be for yours too.

Love,

Reply-To: LBDcaregivers

Date: Sat, 26 Oct 2002 00:02:52 -0000

To: LBDcaregivers

Subject: hello everyone

Hello to all

This is my first time actually posting anything, I have

been just reading all the posts for the last several months just

trying to understand this disease as much as possible. My

sister and I both have been trying to learn as much as possible about

this disease that our dad has and these postings have been a great

help. My sister spoke with Sandie and I cant tell you how much that

has helped us both. This has been a devastating year for us but to

have this support group here has been a great comfort.

[Guest guest]

, my heart goes out to you. You and are further into this than we are

at present. I can understand you wanting to take home, to love her and do

regular things with her. I hope and pray that you have wonderful peace in your

hearts at this time.

Much love

(Hannah's mum, Australia).

[Guest guest]

, my heart goes out to you. You and are further into this than we are

at present. I can understand you wanting to take home, to love her and do

regular things with her. I hope and pray that you have wonderful peace in your

hearts at this time.

Much love

(Hannah's mum, Australia).