re: diastat - little help for karlee

[Guest guest]

just a fyi to everyone that responded to me about diastat. i gave

karlee one today at 1:55pm, it has somewhat eased the seizures a

little bit, no respitory changes and she has not been to sleep. i

called her neuro tonight to ask him what else we could do, if

anything? he said we would add topomax with her phenobarb,keppra,and

klonipin. he also told us the seizure activity would not stop, he got

her mri results from friday and said the disease has really

progressed since jan, he said the majority of her brain was affected.

i feel like someone has just pulled the life out of me, again! he

wanted to know if karlee was still smiling? i said yes she is still

very responsive if she is not seizing. she is crashing so hard and

fast. one good thing that happened fri, she got her button and it is

working out well,she is up to 24lbs. she done great with anesthesia.

thanks,

davonne, moma to karleebeth 18mos old

[Guest guest]

Davonne-

I'm sorry Karlee's seizures are not letting up. Please do not give up hope.

My daughters too have uncontrollable seizures. It is frustrating beyond

belief to be shoving all of these seizure meds (they are on Keppra, Zonegran

and Klonipin) into their systems and still seeing seizures.

How much Diastat did you give her? The twins get 10mg after a seizure

lasting 3 minutes. If that does not stop, I give another 10mg. (They

weighed around 22-24 pounds when I was giving this much.) Often times, this

did not help and we would rush them to the ER for a Dilantin load. This

usually did the trick. They would be completely out of it for up to a week

afterwards due to the insane amount of medication and the instense, long

seizures.

Can I ask what types of seizures you are seeing? Are they clusters or long

single episodes?

I know it's hard living with the fact that these seizures may not stop. I

still have not given up hope and I pray you will not either.

Blessings to you and Karlee,

Kim - Mom to and Lindsey -2 Partial Complex I

re: diastat - little help for karlee

> just a fyi to everyone that responded to me about diastat. i gave

> karlee one today at 1:55pm, it has somewhat eased the seizures a

> little bit, no respitory changes and she has not been to sleep. i

> called her neuro tonight to ask him what else we could do, if

> anything? he said we would add topomax with her phenobarb,keppra,and

> klonipin. he also told us the seizure activity would not stop, he got

> her mri results from friday and said the disease has really

> progressed since jan, he said the majority of her brain was affected.

> i feel like someone has just pulled the life out of me, again! he

> wanted to know if karlee was still smiling? i said yes she is still

> very responsive if she is not seizing. she is crashing so hard and

> fast. one good thing that happened fri, she got her button and it is

> working out well,she is up to 24lbs. she done great with anesthesia.

> thanks,

> davonne, moma to karleebeth 18mos old

>

>

>

>

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

>

[Guest guest]

Dear Davonne: I am so sorry to hear Karlee is having such trouble.

In our case, we have had to use two doses of Diastat in the past,

like Kim said, and in two cases, it didn't work immediately. One

seizure went 30 minutes, another lasted 50 minutes plus. In our

case, our instructions are that if we have to give two Diastat, we

need to call the aid car and go in to the hospital. That way they

are prepared to do more if necessary to stop the seizures plus they

watch respirations, etc. Please discuss with the doc how he wants it

handled for your little girl. I'm sorry things are so hard, I really

feel for you. What kind of seizures is she having, are these grand

mals (tonic clonic)? I wish I could help ease your pain. Cindy (mom

to Seth and Ben, both with mito)

> just a fyi to everyone that responded to me about diastat. i gave

> karlee one today at 1:55pm, it has somewhat eased the seizures a

> little bit, no respitory changes and she has not been to sleep. i

> called her neuro tonight to ask him what else we could do, if

> anything? he said we would add topomax with her

phenobarb,keppra,and

> klonipin. he also told us the seizure activity would not stop, he

got

> her mri results from friday and said the disease has really

> progressed since jan, he said the majority of her brain was

affected.

> i feel like someone has just pulled the life out of me, again! he

> wanted to know if karlee was still smiling? i said yes she is still

> very responsive if she is not seizing. she is crashing so hard and

> fast. one good thing that happened fri, she got her button and it

is

> working out well,she is up to 24lbs. she done great with

anesthesia.

> thanks,

> davonne, moma to karleebeth 18mos old