Re: Hundreds of Seizures a day

[Guest guest]

Your poor thing. It sounds like my dd. This last year has been soooo

much better. I had her on Diflucan for yeast. She got 80% better. I

did a hair test and noticed she was low in Lithium. Put her on that

and it calmed the rages/seizures. I tried Adrenal Cortex and she

improved. I tried at least 2 dozen other things that did not work...

including seizure med. Hope this helps. Thinking of you. This reallly

stinks, I know.

On Nov 28, 2008, at 3:14 PM, cindyosullivan wrote:

> Our son is having hundreds of seizures a day. They were very rare and

> mild before he started keppra. Then we switched to Depakote because

> he was getting worse and discovered that they were now hundreds a day.

> The Depakote did nothing and he even seemed worse. We spent 3 days

> in the hospital to detox him of depakote and now he seems about the

> same maybe a small bit worse but he is now sleep deprived. The

> doctors want him to start taking zonagram. We want to start a low

> glycemic diet instead. Any input or insight into what we should or

> could do next. He has failed 2 drugs. We have heard good things

> about lamictal but the doctors say it will take too long to get into

> his system and see any type of improvement. Is that a good enough

> reason to not use it. what if that is the drug that will help him?

> what if the low glycemic diet is all he needs and they keep medicating

> him. And when do you stop trying new meds. What do you do when no

> med helps and no diet helps. There telling us there is only a 4%

> chance any med or diet will help him at this point. they don't even

> know what type/kind of epilepsy it is. Just constant spiking all day

> even evening, can't walk, speech is terrible, not learning. What do

> we do?

>

>

>

[Guest guest]

I know exactly what he is going through. I went through the exact same thing

last year,when I was seriously ill with meningitis.

> From: cindyosullivan <cindyosullivan@...>

> Subject: [ ] Hundreds of Seizures a day

>

> Date: Friday, November 28, 2008, 2:14 PM

> Our son is having hundreds of seizures a day. They were

> very rare and

> mild before he started keppra. Then we switched to

> Depakote because

> he was getting worse and discovered that they were now

> hundreds a day.

> The Depakote did nothing and he even seemed worse. We

> spent 3 days

> in the hospital to detox him of depakote and now he seems

> about the

> same maybe a small bit worse but he is now sleep deprived.

> The

> doctors want him to start taking zonagram. We want to

> start a low

> glycemic diet instead. Any input or insight into what we

> should or

> could do next. He has failed 2 drugs. We have heard good

> things

> about lamictal but the doctors say it will take too long to

> get into

> his system and see any type of improvement. Is that a good

> enough

> reason to not use it. what if that is the drug that will

> help him?

> what if the low glycemic diet is all he needs and they keep

> medicating

> him. And when do you stop trying new meds. What do you do

> when no

> med helps and no diet helps. There telling us there is

> only a 4%

> chance any med or diet will help him at this point. they

> don't even

> know what type/kind of epilepsy it is. Just constant

> spiking all day

> even evening, can't walk, speech is terrible, not

> learning. What do

> we do?

[Guest guest]

I am so sorry all of you have to endure this. All I can offer is to

follow your instinct and do a risk benefit analysis..OH and get 3

opinions before you make any decision!Let's assume he is going on

zonegran- Is it reasonable to assume he will still have a large

amount of seizures at least at the onset? So, I ask what is the

difference in waiting for lamictal to work vs beginning zonegran

right away? I will telly ou we had an AWFUL experience with

Zonegran... I have to say that EVERY child is different with these

terrible drugs so read with caution- Our son lost what speech he had

and began having drop seizures. Our neuro refused to believe that

the drops were from teh zonegran b/c he considered my son's dose to

be very low- He insisted we increase the dose -when we did the drops

became out of control! At this point I realized the all 6 neuros I

had seen were useless and I would have to do what is in my son's

best inerests. I stopped the zonegran and slowly began keppra.

IMMEDIATELY the drops stopped and have not returned for nearly 3

yrs. I am no fan of keppra but it worked so we weaned him off and he

remained seizure free for several months. He then began pre school

got sick and they came back He isnow on lamictal. They say it

doesn't make the kids hyper but it did for us. I see some new simple

partial type seizures that weren't there before but overall seems

ok. These things change all the time so who knows what will happen

next. MY goal is to take him off as soon as I can. Diet can do

wonders for our kids. Finding their trigger is key- Do what you feel

is right - All the luck in the world to you!

>

> Our son is having hundreds of seizures a day. They were very rare

and

> mild before he started keppra. Then we switched to Depakote

because

> he was getting worse and discovered that they were now hundreds a

day.

> The Depakote did nothing and he even seemed worse. We spent 3

days

> in the hospital to detox him of depakote and now he seems about the

> same maybe a small bit worse but he is now sleep deprived. The

> doctors want him to start taking zonagram. We want to start a low

> glycemic diet instead. Any input or insight into what we should or

> could do next. He has failed 2 drugs. We have heard good things

> about lamictal but the doctors say it will take too long to get

into

> his system and see any type of improvement. Is that a good enough

> reason to not use it. what if that is the drug that will help

him?

> what if the low glycemic diet is all he needs and they keep

medicating

> him. And when do you stop trying new meds. What do you do when no

> med helps and no diet helps. There telling us there is only a 4%

> chance any med or diet will help him at this point. they don't

even

> know what type/kind of epilepsy it is. Just constant spiking all

day

> even evening, can't walk, speech is terrible, not learning. What

do

> we do?

>