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

[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]

Thanks everyone! Ironically we see another neurologist at the NYU Epilepsy

Center but I have a feeling they may not communicate with each other...I have

heard great things about him too and hope he is the one 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)

> >

> >

>

>

[Guest guest]

Hi Diane,

We were using it with keppra but stopped after that- will give it a try and see

if it works!

Thanks for the suggestion!

sarah

>

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

> Diane

>

> Sent from Samsung Conquerâ„¢ 4G

>

>

[Guest guest]

To those of you whom responded regarding NY doctors, do you live in NY or NYC?

Kjlondon

Sent from my iPad

> Thanks everyone! Ironically we see another neurologist at the NYU Epilepsy

Center but I have a feeling they may not communicate with each other...I have

heard great things about him too and hope he is the one 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)

> > >

> > >

> >

> >

[Guest guest]

Hi ,

Thanks for a quick reply? We live on the UES at 68th and 3rd. My daughter,

a, is 2+yrs. We have been told that we should get a VEEG as well as a

sleep study test. a really seems to sleep ok so I have been reluctant to

upset our schedule.

That being said, we went to the Epilepsy Center because spikes were seen during

an EEG. We saw a Dr Rivello, who is relatively new but seems seasoned in the

field with lots of research. I wish I could help more but am new to this

although I feel very well educated in pmg.

Karla

Sent from my iPad

> Hi Karla,

> We live in NYC-Brooklyn.

> 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)

> > > > >

> > > > >

> > > >

> > > >