Re: Hannah - more seizures

[Guest guest]

((((((((((KAREN)))))))))))

I know exactly how you feel. It's a total nightmare racking my brain

always, trying to come up with a " reason " the seizures might be

breaking through, and rarely finding an answer. I've been unable to

keep meds minimized for us - with Lucas' brain the way it is, it's

going to be a miracle if we can get any control. I wish I had some

words to make you feel better or to give you a big " Aha! " . Maybe an

illness is on the way. We usually see a few days of seizures before

something pops up.

Take care and I hope Hannah and you are able to get some rest!

Heidi, mom to Lucas, 15 months today, cerebral dysgenesis, cortical

dysplasia, hypotonia; Leah, 11 yrs., Laney, 6 yrs.

> I am feeling so sad tonight as I wait for another seizure in

Hannah. This morning she had 4 tonic clonics and tonight 5 more.

Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago,

we saw some improvement, but nausea and vomits increased. I waited

patiently to see if the sz improvement was real, and it seems that

maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not

gained weight, does not currently have any infections that we know

of, and her meds and diet remain unchanged. I am sick of the diet,

sick of trying to keep meds at a minimum, and sick to death of

thinking all the time about what to change, when, how and trying to

figure out whats happening in her body. I dont want to do this any

more, but I am in a prison called motherhood, which wont allow me out

because I love my daughter too much. Tonight this is agony. Tomorrow

I might feel better, but it never really goes away. Its late,

everyone has gone to bed, and I had to tell someone how I feel right

now. You lot are it because I konw you are there and I know you

understand.

>

> (Hannah's mum)

[Guest guest]

((((((((((KAREN)))))))))))

I know exactly how you feel. It's a total nightmare racking my brain

always, trying to come up with a " reason " the seizures might be

breaking through, and rarely finding an answer. I've been unable to

keep meds minimized for us - with Lucas' brain the way it is, it's

going to be a miracle if we can get any control. I wish I had some

words to make you feel better or to give you a big " Aha! " . Maybe an

illness is on the way. We usually see a few days of seizures before

something pops up.

Take care and I hope Hannah and you are able to get some rest!

Heidi, mom to Lucas, 15 months today, cerebral dysgenesis, cortical

dysplasia, hypotonia; Leah, 11 yrs., Laney, 6 yrs.

> I am feeling so sad tonight as I wait for another seizure in

Hannah. This morning she had 4 tonic clonics and tonight 5 more.

Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago,

we saw some improvement, but nausea and vomits increased. I waited

patiently to see if the sz improvement was real, and it seems that

maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not

gained weight, does not currently have any infections that we know

of, and her meds and diet remain unchanged. I am sick of the diet,

sick of trying to keep meds at a minimum, and sick to death of

thinking all the time about what to change, when, how and trying to

figure out whats happening in her body. I dont want to do this any

more, but I am in a prison called motherhood, which wont allow me out

because I love my daughter too much. Tonight this is agony. Tomorrow

I might feel better, but it never really goes away. Its late,

everyone has gone to bed, and I had to tell someone how I feel right

now. You lot are it because I konw you are there and I know you

understand.

>

> (Hannah's mum)

[Guest guest]

((((((((((KAREN)))))))))))

I know exactly how you feel. It's a total nightmare racking my brain

always, trying to come up with a " reason " the seizures might be

breaking through, and rarely finding an answer. I've been unable to

keep meds minimized for us - with Lucas' brain the way it is, it's

going to be a miracle if we can get any control. I wish I had some

words to make you feel better or to give you a big " Aha! " . Maybe an

illness is on the way. We usually see a few days of seizures before

something pops up.

Take care and I hope Hannah and you are able to get some rest!

Heidi, mom to Lucas, 15 months today, cerebral dysgenesis, cortical

dysplasia, hypotonia; Leah, 11 yrs., Laney, 6 yrs.

> I am feeling so sad tonight as I wait for another seizure in

Hannah. This morning she had 4 tonic clonics and tonight 5 more.

Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago,

we saw some improvement, but nausea and vomits increased. I waited

patiently to see if the sz improvement was real, and it seems that

maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not

gained weight, does not currently have any infections that we know

of, and her meds and diet remain unchanged. I am sick of the diet,

sick of trying to keep meds at a minimum, and sick to death of

thinking all the time about what to change, when, how and trying to

figure out whats happening in her body. I dont want to do this any

more, but I am in a prison called motherhood, which wont allow me out

because I love my daughter too much. Tonight this is agony. Tomorrow

I might feel better, but it never really goes away. Its late,

everyone has gone to bed, and I had to tell someone how I feel right

now. You lot are it because I konw you are there and I know you

understand.

>

> (Hannah's mum)

[Guest guest]

:

I'm here, I'm not in bed-I'm thinking of you and this torture that goes on and on for you and your precious little one. I too have a Hanna-just spelled different.

How I wish I could make this all better for you-or if I could come over there and give you a "huge" break.

Last year at this time I was feeling the same way as you are-but for us we got our answer in March of 2001-and for this I am humbled and so very..........thank-full.

I have posted again and again the herbal supplements and digestive ensymes, acidoliphus etc that worked for Josh-but it seems that he is the only one-who has had such seizure freedom after starting these. We also took him to a chiropractor at the same time that we started all of the above-we were desperate and scheduled for surgery and tryed every-last thing-and it worked.

All I can offer is my shoulder-my heart and my compassion and of course my prayers and may-be some courage to keep on going-to take on each new day with hope-and also a prayer for wisdom for you, your Neuro-your dietician and comfort for your precious Hannah.

Hugs

Diane

Re: Hannah - more seizures

((((((((((KAREN)))))))))))I know exactly how you feel. It's a total nightmare racking my brain always, trying to come up with a "reason" the seizures might be breaking through, and rarely finding an answer. I've been unable to keep meds minimized for us - with Lucas' brain the way it is, it's going to be a miracle if we can get any control. I wish I had some words to make you feel better or to give you a big "Aha!". Maybe an illness is on the way. We usually see a few days of seizures before something pops up. Take care and I hope Hannah and you are able to get some rest!Heidi, mom to Lucas, 15 months today, cerebral dysgenesis, cortical dysplasia, hypotonia; Leah, 11 yrs., Laney, 6 yrs.> I am feeling so sad tonight as I wait for another seizure in Hannah. This morning she had 4 tonic clonics and tonight 5 more. Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago, we saw some improvement, but nausea and vomits increased. I waited patiently to see if the sz improvement was real, and it seems that maybe it's not. Lots of prolonged partial sz happening too. Reluctant to push the ratio up to 4:1 for fear of more vomiting. Hannah has not gained weight, does not currently have any infections that we know of, and her meds and diet remain unchanged. I am sick of the diet, sick of trying to keep meds at a minimum, and sick to death of thinking all the time about what to change, when, how and trying to figure out whats happening in her body. I dont want to do this any more, but I am in a prison called motherhood, which wont allow me out because I love my daughter too much. Tonight this is agony. Tomorrow I might feel better, but it never really goes away. Its late, everyone has gone to bed, and I had to tell someone how I feel right now. You lot are it because I konw you are there and I know you understand.> > (Hannah's mum) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

:

I'm here, I'm not in bed-I'm thinking of you and this torture that goes on and on for you and your precious little one. I too have a Hanna-just spelled different.

How I wish I could make this all better for you-or if I could come over there and give you a "huge" break.

Last year at this time I was feeling the same way as you are-but for us we got our answer in March of 2001-and for this I am humbled and so very..........thank-full.

I have posted again and again the herbal supplements and digestive ensymes, acidoliphus etc that worked for Josh-but it seems that he is the only one-who has had such seizure freedom after starting these. We also took him to a chiropractor at the same time that we started all of the above-we were desperate and scheduled for surgery and tryed every-last thing-and it worked.

All I can offer is my shoulder-my heart and my compassion and of course my prayers and may-be some courage to keep on going-to take on each new day with hope-and also a prayer for wisdom for you, your Neuro-your dietician and comfort for your precious Hannah.

Hugs

Diane

Re: Hannah - more seizures

((((((((((KAREN)))))))))))I know exactly how you feel. It's a total nightmare racking my brain always, trying to come up with a "reason" the seizures might be breaking through, and rarely finding an answer. I've been unable to keep meds minimized for us - with Lucas' brain the way it is, it's going to be a miracle if we can get any control. I wish I had some words to make you feel better or to give you a big "Aha!". Maybe an illness is on the way. We usually see a few days of seizures before something pops up. Take care and I hope Hannah and you are able to get some rest!Heidi, mom to Lucas, 15 months today, cerebral dysgenesis, cortical dysplasia, hypotonia; Leah, 11 yrs., Laney, 6 yrs.> I am feeling so sad tonight as I wait for another seizure in Hannah. This morning she had 4 tonic clonics and tonight 5 more. Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago, we saw some improvement, but nausea and vomits increased. I waited patiently to see if the sz improvement was real, and it seems that maybe it's not. Lots of prolonged partial sz happening too. Reluctant to push the ratio up to 4:1 for fear of more vomiting. Hannah has not gained weight, does not currently have any infections that we know of, and her meds and diet remain unchanged. I am sick of the diet, sick of trying to keep meds at a minimum, and sick to death of thinking all the time about what to change, when, how and trying to figure out whats happening in her body. I dont want to do this any more, but I am in a prison called motherhood, which wont allow me out because I love my daughter too much. Tonight this is agony. Tomorrow I might feel better, but it never really goes away. Its late, everyone has gone to bed, and I had to tell someone how I feel right now. You lot are it because I konw you are there and I know you understand.> > (Hannah's mum) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Oh, . . . I hate this feeling (been there so many

times myself) and I hate that you and your Hannah are

having to deal with this. I just don't understand why

there aren't any answers for our kids.

Gosh -- I'm just at a total loss as to what to say. .

.. just please know that I'm thinking of you and

praying for you. You were such a beacon of light as

we were going through our drug wean and have been so

helpful and supportive to me on this list.

Do you think there's any possibility that this is

still all related to what she went through in the

hospital? I look back at our darkest days -- those

following our status ICU episode in May 2000. . . I

think it took several months to get all the drugs they

pumped into her out of her system. The elementary

school teacher at my daughter's school has some

chronic health issues -- and she says she thinks meds

take a good 2-3 months to work their way out of the

system. Just thinking out loud -- I know it's nearly

impossible to just hang on through something like

this.

Ah gee, hon -- just hang on and know that your friends

are all here for you through this. Please keep us

posted and give Hannah a hug for me . . . and take

some deep breaths yourself, too. Big hugs across the

ocean. . .--D

--- " GAVAN J. CANAVAN " wrote:

> I am feeling so sad tonight as I wait for another

> seizure in Hannah. This morning she had 4 tonic

> clonics and tonight 5 more. Having increased the

> ratio from 3:1 to 3.5:1 a couple of weeks ago, we

> saw some improvement, but nausea and vomits

> increased. I waited patiently to see if the sz

> improvement was real, and it seems that maybe it's

> not. Lots of prolonged partial sz happening too.

> Reluctant to push the ratio up to 4:1 for fear of

> more vomiting. Hannah has not gained weight, does

> not currently have any infections that we know of,

> and her meds and diet remain unchanged. I am sick of

> the diet, sick of trying to keep meds at a minimum,

> and sick to death of thinking all the time about

> what to change, when, how and trying to figure out

> whats happening in her body. I dont want to do this

> any more, but I am in a prison called motherhood,

> which wont allow me out because I love my daughter

> too much. Tonight this is agony. Tomorrow I might

> feel better, but it never really goes away. Its

> late, everyone has gone to bed, and I had to tell

> someone how I feel right now. You lot are it because

> I konw you are there and I know you understand.

>

> (Hannah's mum)

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. "

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews.yahoo.com/fc/US/Emergency_Information/

[Guest guest]

Oh, . . . I hate this feeling (been there so many

times myself) and I hate that you and your Hannah are

having to deal with this. I just don't understand why

there aren't any answers for our kids.

Gosh -- I'm just at a total loss as to what to say. .

.. just please know that I'm thinking of you and

praying for you. You were such a beacon of light as

we were going through our drug wean and have been so

helpful and supportive to me on this list.

Do you think there's any possibility that this is

still all related to what she went through in the

hospital? I look back at our darkest days -- those

following our status ICU episode in May 2000. . . I

think it took several months to get all the drugs they

pumped into her out of her system. The elementary

school teacher at my daughter's school has some

chronic health issues -- and she says she thinks meds

take a good 2-3 months to work their way out of the

system. Just thinking out loud -- I know it's nearly

impossible to just hang on through something like

this.

Ah gee, hon -- just hang on and know that your friends

are all here for you through this. Please keep us

posted and give Hannah a hug for me . . . and take

some deep breaths yourself, too. Big hugs across the

ocean. . .--D

--- " GAVAN J. CANAVAN " wrote:

> I am feeling so sad tonight as I wait for another

> seizure in Hannah. This morning she had 4 tonic

> clonics and tonight 5 more. Having increased the

> ratio from 3:1 to 3.5:1 a couple of weeks ago, we

> saw some improvement, but nausea and vomits

> increased. I waited patiently to see if the sz

> improvement was real, and it seems that maybe it's

> not. Lots of prolonged partial sz happening too.

> Reluctant to push the ratio up to 4:1 for fear of

> more vomiting. Hannah has not gained weight, does

> not currently have any infections that we know of,

> and her meds and diet remain unchanged. I am sick of

> the diet, sick of trying to keep meds at a minimum,

> and sick to death of thinking all the time about

> what to change, when, how and trying to figure out

> whats happening in her body. I dont want to do this

> any more, but I am in a prison called motherhood,

> which wont allow me out because I love my daughter

> too much. Tonight this is agony. Tomorrow I might

> feel better, but it never really goes away. Its

> late, everyone has gone to bed, and I had to tell

> someone how I feel right now. You lot are it because

> I konw you are there and I know you understand.

>

> (Hannah's mum)

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. "

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews.yahoo.com/fc/US/Emergency_Information/

[Guest guest]

Hi ,

This is exactly what this group is here for. No one understands

better than people who are in the same situation as we are. It is

okay to feel sad. When Hannah was bad earlier this month I cried for

four days straight. It was just to overwhelming to keep trying to

figure out what brought on her seizures and at times I just want to

scream over the diet. The only good thing through all that was that

it showed me just how close to the edge she really is and I do think

the diet has been the ONLY thing that has kept her seizures from

taking over her life. She has Atonic seizures and when they come in

clusters she can have 100's a day. Basically she has to be helped

with EVERYTHING when her seizures come! Try to keep taking it one day

at a time so you don't overwhelm yourself. We all know that the diet

is not easy. I will be praying for you. Keep us posted, Gail

> I am feeling so sad tonight as I wait for another seizure in

Hannah. This morning she had 4 tonic clonics and tonight 5 more.

Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago,

we saw some improvement, but nausea and vomits increased. I waited

patiently to see if the sz improvement was real, and it seems that

maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not

gained weight, does not currently have any infections that we know

of, and her meds and diet remain unchanged. I am sick of the diet,

sick of trying to keep meds at a minimum, and sick to of

thinking all the time about what to change, when, how and trying to

figure out whats happening in her body. I dont want to do this any

more, but I am in a prison called motherhood, which wont allow me out

because I love my daughter too much. Tonight this is agony. Tomorrow

I might feel better, but it never really goes away. Its late,

everyone has gone to bed, and I had to tell someone how I feel right

now. You lot are it because I konw you are there and I know you

understand.

>

> (Hannah's mum)

[Guest guest]

Hi ,

This is exactly what this group is here for. No one understands

better than people who are in the same situation as we are. It is

okay to feel sad. When Hannah was bad earlier this month I cried for

four days straight. It was just to overwhelming to keep trying to

figure out what brought on her seizures and at times I just want to

scream over the diet. The only good thing through all that was that

it showed me just how close to the edge she really is and I do think

the diet has been the ONLY thing that has kept her seizures from

taking over her life. She has Atonic seizures and when they come in

clusters she can have 100's a day. Basically she has to be helped

with EVERYTHING when her seizures come! Try to keep taking it one day

at a time so you don't overwhelm yourself. We all know that the diet

is not easy. I will be praying for you. Keep us posted, Gail

> I am feeling so sad tonight as I wait for another seizure in

Hannah. This morning she had 4 tonic clonics and tonight 5 more.

Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago,

we saw some improvement, but nausea and vomits increased. I waited

patiently to see if the sz improvement was real, and it seems that

maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not

gained weight, does not currently have any infections that we know

of, and her meds and diet remain unchanged. I am sick of the diet,

sick of trying to keep meds at a minimum, and sick to of

thinking all the time about what to change, when, how and trying to

figure out whats happening in her body. I dont want to do this any

more, but I am in a prison called motherhood, which wont allow me out

because I love my daughter too much. Tonight this is agony. Tomorrow

I might feel better, but it never really goes away. Its late,

everyone has gone to bed, and I had to tell someone how I feel right

now. You lot are it because I konw you are there and I know you

understand.

>

> (Hannah's mum)

[Guest guest]

Hi ,

This is exactly what this group is here for. No one understands

better than people who are in the same situation as we are. It is

okay to feel sad. When Hannah was bad earlier this month I cried for

four days straight. It was just to overwhelming to keep trying to

figure out what brought on her seizures and at times I just want to

scream over the diet. The only good thing through all that was that

it showed me just how close to the edge she really is and I do think

the diet has been the ONLY thing that has kept her seizures from

taking over her life. She has Atonic seizures and when they come in

clusters she can have 100's a day. Basically she has to be helped

with EVERYTHING when her seizures come! Try to keep taking it one day

at a time so you don't overwhelm yourself. We all know that the diet

is not easy. I will be praying for you. Keep us posted, Gail

> I am feeling so sad tonight as I wait for another seizure in

Hannah. This morning she had 4 tonic clonics and tonight 5 more.

Having increased the ratio from 3:1 to 3.5:1 a couple of weeks ago,

we saw some improvement, but nausea and vomits increased. I waited

patiently to see if the sz improvement was real, and it seems that

maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not

gained weight, does not currently have any infections that we know

of, and her meds and diet remain unchanged. I am sick of the diet,

sick of trying to keep meds at a minimum, and sick to of

thinking all the time about what to change, when, how and trying to

figure out whats happening in her body. I dont want to do this any

more, but I am in a prison called motherhood, which wont allow me out

because I love my daughter too much. Tonight this is agony. Tomorrow

I might feel better, but it never really goes away. Its late,

everyone has gone to bed, and I had to tell someone how I feel right

now. You lot are it because I konw you are there and I know you

understand.

>

> (Hannah's mum)

[Guest guest]

,

I'm so sorry about all this. Actually I'm in the same boat.

After about 6 weeks of fairly good control things have

gone pear-shaped

I too don't know what went wrong and what to do next.

It is as if we are all lurching from one crisis to another,

and can't relax at all. I do understand perfectly.

However as you say tomorrow is another day and I hope

things look better and Hannah gets out of this bad patch.

Love

Saro...Rohan's mum

"GAVAN J. CANAVAN" wrote:

I am feeling so sad tonight as I

wait for another seizure in Hannah. This morning she had 4 tonic clonics

and tonight 5 more. Having increased the ratio from 3:1 to 3.5:1 a couple

of weeks ago, we saw some improvement, but nausea and vomits increased.

I waited patiently to see if the sz improvement was real, and it seems

that maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not gained

weight, does not currently have any infections that we know of, and her

meds and diet remain unchanged. I am sick of the diet, sick of trying to

keep meds at a minimum, and sick to death of thinking all the time about

what to change, when, how and trying to figure out whats happening in her

body. I dont want to do this any more, but I am in a prison called motherhood,

which wont allow me out because I love my daughter too much. Tonight this

is agony. Tomorrow I might feel better, but it never really goes away.

Its late, everyone has gone to bed, and I had to tell someone how I feel

right now. You lot are it because I konw you are there and I know you understand.

(Hannah's mum)

"The Ketogenic Diet....a realistic treatment option, NOT

just a last resort!"

List is for parent to parent support only.

It is important to get medical advice from a professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

,

I'm so sorry about all this. Actually I'm in the same boat.

After about 6 weeks of fairly good control things have

gone pear-shaped

I too don't know what went wrong and what to do next.

It is as if we are all lurching from one crisis to another,

and can't relax at all. I do understand perfectly.

However as you say tomorrow is another day and I hope

things look better and Hannah gets out of this bad patch.

Love

Saro...Rohan's mum

"GAVAN J. CANAVAN" wrote:

I am feeling so sad tonight as I

wait for another seizure in Hannah. This morning she had 4 tonic clonics

and tonight 5 more. Having increased the ratio from 3:1 to 3.5:1 a couple

of weeks ago, we saw some improvement, but nausea and vomits increased.

I waited patiently to see if the sz improvement was real, and it seems

that maybe it's not. Lots of prolonged partial sz happening too. Reluctant

to push the ratio up to 4:1 for fear of more vomiting. Hannah has not gained

weight, does not currently have any infections that we know of, and her

meds and diet remain unchanged. I am sick of the diet, sick of trying to

keep meds at a minimum, and sick to death of thinking all the time about

what to change, when, how and trying to figure out whats happening in her

body. I dont want to do this any more, but I am in a prison called motherhood,

which wont allow me out because I love my daughter too much. Tonight this

is agony. Tomorrow I might feel better, but it never really goes away.

Its late, everyone has gone to bed, and I had to tell someone how I feel

right now. You lot are it because I konw you are there and I know you understand.

(Hannah's mum)

"The Ketogenic Diet....a realistic treatment option, NOT

just a last resort!"

List is for parent to parent support only.

It is important to get medical advice from a professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

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

> Do you think there's any possibility that this is

> still all related to what she went through in the

> hospital?

Actually DeEtte, I often think about that and wonder, but we'll never really

know. That drug o/dose keeps niggling at the back of my mind, but I'm sure

nobody could (or would) tell me what the negative side effects of that might

be. Getting drugs out of the system is an issue that we just have to be

soooooo patient with, don't we?

Things looking better these last couple of days.

(Hannah's mum, Australia)