Re: Sleep- Insomnia- Night Seizure Activity-Please help!

[Guest guest]

Have you tried B6? We give 50 mg twice a day. 

Diane

Sent from Samsung Conquerâ„¢ 4G

[Guest guest]

Hi ,

We have the same issue with Calvin at night and it has always been a battle to

find a med that keeps the brain activity low (epileptic discharges) so he can

get sleep. We just put him on a new med that has just been legalized in the US,

it was legal for years in Canada. It is working wonderfully, it is clobozam (the

generic we use is Onfi). Valium did work for a while with him but we would have

to keep increasing the dosage. If you have questions please email me. 

Take Care,

Kara Dedert

________________________________

To: polymicrogyria

Sent: Monday, March 5, 2012 7:15 AM

Subject: Sleep- Insomnia- Night Seizure Activity-Please help!

 

Hi,

I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now are

trying lorezepam which 3 out of 7 nights will work ok, the other nights she will

be up at 3 and restless, talking, moving around, and will not fall back asleep.

We have had sleep studies while on most of these medications which have shown

the seizure activity to be highly active and not under control. The lorezepam

does not work that well but so far it is the only medication that has not

altered her personality to be drugged out or highly volatile.

I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

(sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

Thank you for any ideas or leads!

(Ruby-5yrs old, right hemisphere polymicrogyria)

[Guest guest]

We have been using Onfi (Clobozam) for 4 years and it has allowed our son (now

7) to sleep 10 hours at night.  We also put VNS in him at 4 years.  We know

that has helped slow down the seizure activity.  Keep trying new

things............

Subject: Re: Sleep- Insomnia- Night Seizure Activity-Please

help!

To: " polymicrogyria " <polymicrogyria >

Date: Monday, March 5, 2012, 8:30 AM

 

Hi ,

We have the same issue with Calvin at night and it has always been a battle to

find a med that keeps the brain activity low (epileptic discharges) so he can

get sleep. We just put him on a new med that has just been legalized in the US,

it was legal for years in Canada. It is working wonderfully, it is clobozam (the

generic we use is Onfi). Valium did work for a while with him but we would have

to keep increasing the dosage. If you have questions please email me. 

Take Care,

Kara Dedert

________________________________

To: polymicrogyria

Sent: Monday, March 5, 2012 7:15 AM

Subject: Sleep- Insomnia- Night Seizure Activity-Please help!

 

Hi,

I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now are

trying lorezepam which 3 out of 7 nights will work ok, the other nights she will

be up at 3 and restless, talking, moving around, and will not fall back asleep.

We have had sleep studies while on most of these medications which have shown

the seizure activity to be highly active and not under control. The lorezepam

does not work that well but so far it is the only medication that has not

altered her personality to be drugged out or highly volatile.

I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

(sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

Thank you for any ideas or leads!

(Ruby-5yrs old, right hemisphere polymicrogyria)

[Guest guest]

,

Can you describe what VNS is?

Kara

________________________________

To: polymicrogyria

Sent: Monday, March 5, 2012 8:34 AM

Subject: Re: Sleep- Insomnia- Night Seizure Activity-Please

help!

 

We have been using Onfi (Clobozam) for 4 years and it has allowed our son (now

7) to sleep 10 hours at night.  We also put VNS in him at 4 years.  We know

that has helped slow down the seizure activity.  Keep trying new

things............

Subject: Re: Sleep- Insomnia- Night Seizure Activity-Please

help!

To: " polymicrogyria " <polymicrogyria >

Date: Monday, March 5, 2012, 8:30 AM

 

Hi ,

We have the same issue with Calvin at night and it has always been a battle to

find a med that keeps the brain activity low (epileptic discharges) so he can

get sleep. We just put him on a new med that has just been legalized in the US,

it was legal for years in Canada. It is working wonderfully, it is clobozam (the

generic we use is Onfi). Valium did work for a while with him but we would have

to keep increasing the dosage. If you have questions please email me. 

Take Care,

Kara Dedert

________________________________

To: polymicrogyria

Sent: Monday, March 5, 2012 7:15 AM

Subject: Sleep- Insomnia- Night Seizure Activity-Please help!

 

Hi,

I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now are

trying lorezepam which 3 out of 7 nights will work ok, the other nights she will

be up at 3 and restless, talking, moving around, and will not fall back asleep.

We have had sleep studies while on most of these medications which have shown

the seizure activity to be highly active and not under control. The lorezepam

does not work that well but so far it is the only medication that has not

altered her personality to be drugged out or highly volatile.

I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

(sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

Thank you for any ideas or leads!

(Ruby-5yrs old, right hemisphere polymicrogyria)

[Guest guest]

Vagal nerve stimulation, it's an implant that helps control seizures.  Just

google VNS Therapy.  We had it done by a pediatric neurosurgeon at Boston

Children's.  It may or may not work but for most young kids it tends to work

better than older adults.  It has stopped our son's grand mal seizures, he just

has simple partial seizures now.  

Subject: Re: Sleep- Insomnia- Night Seizure Activity-Please

help!

To: " polymicrogyria " <polymicrogyria >

Date: Monday, March 5, 2012, 8:30 AM

 

Hi ,

We have the same issue with Calvin at night and it has always been a battle to

find a med that keeps the brain activity low (epileptic discharges) so he can

get sleep. We just put him on a new med that has just been legalized in the US,

it was legal for years in Canada. It is working wonderfully, it is clobozam (the

generic we use is Onfi). Valium did work for a while with him but we would have

to keep increasing the dosage. If you have questions please email me. 

Take Care,

Kara Dedert

________________________________

To: polymicrogyria

Sent: Monday, March 5, 2012 7:15 AM

Subject: Sleep- Insomnia- Night Seizure Activity-Please help!

 

Hi,

I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now are

trying lorezepam which 3 out of 7 nights will work ok, the other nights she will

be up at 3 and restless, talking, moving around, and will not fall back asleep.

We have had sleep studies while on most of these medications which have shown

the seizure activity to be highly active and not under control. The lorezepam

does not work that well but so far it is the only medication that has not

altered her personality to be drugged out or highly volatile.

I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

(sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

Thank you for any ideas or leads!

(Ruby-5yrs old, right hemisphere polymicrogyria)

[Guest guest]

Is your Doctor in NEw York City? We Went to Dr Devisky in Langone Medical

Center and they are great! I travel 3 hrs to get to see them. I'm sure they

will help you!

Sent from my iPad

> Hi,

> I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

> We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now

are trying lorezepam which 3 out of 7 nights will work ok, the other nights she

will be up at 3 and restless, talking, moving around, and will not fall back

asleep. We have had sleep studies while on most of these medications which have

shown the seizure activity to be highly active and not under control. The

lorezepam does not work that well but so far it is the only medication that has

not altered her personality to be drugged out or highly volatile.

> I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

> (sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

> Thank you for any ideas or leads!

>

> (Ruby-5yrs old, right hemisphere polymicrogyria)

>

>

[Guest guest]

We see Dr. Devinsky, too, his number is . He is awesome, and his

nurses and staff respond to phone messages faster than our local doctors! He is

good with meds, and testing, and will help you. Our daughter, 8, has had a life

long problem with sleeping. I think that goes hand in hand with a seizure

disorder, unfortunately! Best of luck,

Thea

Re: Sleep- Insomnia- Night Seizure Activity-Please

help!

Is your Doctor in NEw York City? We Went to Dr Devisky in Langone Medical

Center and they are great! I travel 3 hrs to get to see them. I'm sure they

will help you!

Sent from my iPad

> Hi,

> I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

> We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now

are trying lorezepam which 3 out of 7 nights will work ok, the other nights she

will be up at 3 and restless, talking, moving around, and will not fall back

asleep. We have had sleep studies while on most of these medications which have

shown the seizure activity to be highly active and not under control. The

lorezepam does not work that well but so far it is the only medication that has

not altered her personality to be drugged out or highly volatile.

> I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

> (sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

> Thank you for any ideas or leads!

>

> (Ruby-5yrs old, right hemisphere polymicrogyria)

>

>

[Guest guest]

He is the person to see!

Sent from my Verizon Wireless BlackBerry

Re: Sleep- Insomnia- Night Seizure Activity-Please

help!

Is your Doctor in NEw York City? We Went to Dr Devisky in Langone Medical

Center and they are great! I travel 3 hrs to get to see them. I'm sure they

will help you!

Sent from my iPad

> Hi,

> I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

> We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now

are trying lorezepam which 3 out of 7 nights will work ok, the other nights she

will be up at 3 and restless, talking, moving around, and will not fall back

asleep. We have had sleep studies while on most of these medications which have

shown the seizure activity to be highly active and not under control. The

lorezepam does not work that well but so far it is the only medication that has

not altered her personality to be drugged out or highly volatile.

> I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

> (sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

> Thank you for any ideas or leads!

>

> (Ruby-5yrs old, right hemisphere polymicrogyria)

>

>

[Guest guest]

I think there is a doc there, Kuzniecky, who is one of the world's

experts in PMG, btw--so you can always ask for a consult with him, and/or ask

Dr. Devinsky if he could bring Dr. K. in...

Good luck!

Thea

Re: Sleep- Insomnia- Night Seizure Activity-Please

help!

We are going to see Dr. Devinsky next week- I feel like I am " cheating " on our

neurologist who works in the same place, but I have to find someone who can help

us!!

Thanks,

sarah

> >

> > > Hi,

> > > I wanted to know if anyone on this board has found someone who specializes

in sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

> > > We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and

now are trying lorezepam which 3 out of 7 nights will work ok, the other nights

she will be up at 3 and restless, talking, moving around, and will not fall back

asleep. We have had sleep studies while on most of these medications which have

shown the seizure activity to be highly active and not under control. The

lorezepam does not work that well but so far it is the only medication that has

not altered her personality to be drugged out or highly volatile.

> > > I have this hope there is some specialist out there doing research or

someone who has had the same kind of situation, who has a great idea for us to

try. We are willing to travel to meet with a specialist, if it means that we

will find some answer. So far our neurologist has been trying all kinds of

medications, and his most recent idea is to do a controlled medication

experiment on her in the hospital where they give her high doses of valium and

other controlled medicine to see if anything can reduce the seizure activity

over the course of a few days.

> > > (sounds like a very expensive and scary thing to do and I am feeling a

little skeptical that this is the only alternative for her sleep problem).

> > > Thank you for any ideas or leads!

> > >

> > > (Ruby-5yrs old, right hemisphere polymicrogyria)

> > >

> > >

> >

> >