Re: Need a Pediatric Epileptologist Recommendation

[Guest guest]

Elaine Wyllie I'll get correct spelling, I know this is wrong...) Cleveland

Clinic. No question. She is wonderful, brilliant an listens to the family. They

also have the resources to get any testing done quickly.

Her number is . You will ADORE her.

Sent from my iPhone

On Nov 11, 2011, at 4:30 PM, " catherine.jacobson "

wrote:

> Hi All,

>

> We want to get a second opinion and are looking for the best pediatric

epileptologist out there. My son is 2 and a half and has had seizures since he

was 14 weeks old. We have tried about 10 different medications, the ketogenic

diet and the vagus nerve stimulator. The VNS seemed to be working like a miracle

until he went under general anesthesia for ear tube placement and an

adenoidectomy. That night they came back. Our current neurologist is telling me

to just wait and see what happens, and I can't. I need someone else's opinion

and an action plan.

>

> I am looking at the Cleveland Clinic, Mass General, or Orrin Devinsky at NYU.

Does anyone have any recommendations there, or elsewhere?

>

> Thanks for your help,

>

>

>

[Guest guest]

Hi ,

I have been reading entries from the group about a year now and just read and

take in all the info-and today I will change that so that I can piggy back on

's words. We have been seeing Dr. Elaine Wyllie (your spelling is

correct) for about 14 years and I feel like we have been through it all. Many

many meds- ketogenic diet and VNS- and she has helped us through it all. I

asked Dr. Dobyns many years ago who he would recommend ( we are in Cleveland)

and he felt we needed to stay at the Clinic and with Dr. Wyllie. She is really

well written in the medical world and has incredible experience with kids like

ours. My son has daily seizures and we are very careful not to snow him. For

our son, we have discovered over the years that we have to look at quality of

life- not just seizure control. I truly can accept all that comes with my guy,

. but I really dis-like anything to do with seizures.

Saying that, Dr. Wyllie has been a really good fit for us. She has definitely

become more compassionate over the years - I too think the world of her- Highly

recommend her and the Cleveland Clinic. We have seen about 39 specialist

there!!!!! and been very pleased with the team approach.

Sue Rice

Mother of -

age, 14

>

>

> Elaine Wyllie I'll get correct spelling, I know this is wrong...) Cleveland

Clinic. No question. She is wonderful, brilliant an listens to the family. They

also have the resources to get any testing done quickly.

>

> Her number is . You will ADORE her.

>

>

>

> Sent from my iPhone

>

> On Nov 11, 2011, at 4:30 PM, " catherine.jacobson "

wrote:

>

> > Hi All,

> >

> > We want to get a second opinion and are looking for the best pediatric

epileptologist out there. My son is 2 and a half and has had seizures since he

was 14 weeks old. We have tried about 10 different medications, the ketogenic

diet and the vagus nerve stimulator. The VNS seemed to be working like a miracle

until he went under general anesthesia for ear tube placement and an

adenoidectomy. That night they came back. Our current neurologist is telling me

to just wait and see what happens, and I can't. I need someone else's opinion

and an action plan.

> >

> > I am looking at the Cleveland Clinic, Mass General, or Orrin Devinsky at

NYU. Does anyone have any recommendations there, or elsewhere?

> >

> > Thanks for your help,

> >

> >

> >

>

>

[Guest guest]

Sue

We are in Cleveland (west side) and my daughter is 14. How interesting. We went

through surgery with Dr. Bingaman on August 11 and - quick, knock on some wood -

have had NO seizures. It's not perfect, it's not easy, but right now I'd do it

again in a moment. Ask me tomorrow and I might change my mind!!

If you ever want to get together for coffee let me know!

Sent from my iPhone

> Hi ,

> I have been reading entries from the group about a year now and just read and

take in all the info-and today I will change that so that I can piggy back on

's words. We have been seeing Dr. Elaine Wyllie (your spelling is

correct) for about 14 years and I feel like we have been through it all. Many

many meds- ketogenic diet and VNS- and she has helped us through it all. I

asked Dr. Dobyns many years ago who he would recommend ( we are in Cleveland)

and he felt we needed to stay at the Clinic and with Dr. Wyllie. She is really

well written in the medical world and has incredible experience with kids like

ours. My son has daily seizures and we are very careful not to snow him. For

our son, we have discovered over the years that we have to look at quality of

life- not just seizure control. I truly can accept all that comes with my guy,

. but I really dis-like anything to do with seizures.

> Saying that, Dr. Wyllie has been a really good fit for us. She has

definitely become more compassionate over the years - I too think the world of

her- Highly recommend her and the Cleveland Clinic. We have seen about 39

specialist there!!!!! and been very pleased with the team approach.

> Sue Rice

> Mother of -

> age, 14

>

>

>

>

>>

>>

>> Elaine Wyllie I'll get correct spelling, I know this is wrong...) Cleveland

Clinic. No question. She is wonderful, brilliant an listens to the family. They

also have the resources to get any testing done quickly.

>>

>> Her number is . You will ADORE her.

>>

>>

>>

>> Sent from my iPhone

>>

>> On Nov 11, 2011, at 4:30 PM, " catherine.jacobson "

wrote:

>>

>>> Hi All,

>>>

>>> We want to get a second opinion and are looking for the best pediatric

epileptologist out there. My son is 2 and a half and has had seizures since he

was 14 weeks old. We have tried about 10 different medications, the ketogenic

diet and the vagus nerve stimulator. The VNS seemed to be working like a miracle

until he went under general anesthesia for ear tube placement and an

adenoidectomy. That night they came back. Our current neurologist is telling me

to just wait and see what happens, and I can't. I need someone else's opinion

and an action plan.

>>>

>>> I am looking at the Cleveland Clinic, Mass General, or Orrin Devinsky at

NYU. Does anyone have any recommendations there, or elsewhere?

>>>

>>> Thanks for your help,

>>>

>>>

>>>

>>

>>

[Guest guest]

,

Wow that is fantastic to hear about your daughter and her seizures or lack of

them!!!!! We too know Dr. Bingaman, he implanted ' VNS. Unfortunatly,

has never been a candidate for brain surgery- that decision must have

been difficult but sounds like that it was the right one- We are on the south

side (i guess- closer to Akron) but would love to meet for coffee- We are at a

very interesting place in our journey- fourteen was the age that I was always so

worried how we would do it- now that we are here - its not so bad- Our love for

has grown with his age and made what use to be so frightening very do

able and even with the seizures- brings us great joy and perspective of

life- would love to meet up-

Sue

> Sue

>

> We are in Cleveland (west side) and my daughter is 14. How interesting. We

went through surgery with Dr. Bingaman on August 11 and - quick, knock on some

wood - have had NO seizures. It's not perfect, it's not easy, but right now I'd

do it again in a moment. Ask me tomorrow and I might change my mind!!

>

> If you ever want to get together for coffee let me know!

>

>

>

> Sent from my iPhone

>

>

>

> > Hi ,

> > I have been reading entries from the group about a year now and just read

and take in all the info-and today I will change that so that I can piggy back

on 's words. We have been seeing Dr. Elaine Wyllie (your spelling is

correct) for about 14 years and I feel like we have been through it all. Many

many meds- ketogenic diet and VNS- and she has helped us through it all. I asked

Dr. Dobyns many years ago who he would recommend ( we are in Cleveland) and he

felt we needed to stay at the Clinic and with Dr. Wyllie. She is really well

written in the medical world and has incredible experience with kids like ours.

My son has daily seizures and we are very careful not to snow him. For our son,

we have discovered over the years that we have to look at quality of life- not

just seizure control. I truly can accept all that comes with my guy, . but

I really dis-like anything to do with seizures.

> > Saying that, Dr. Wyllie has been a really good fit for us. She has

definitely become more compassionate over the years - I too think the world of

her- Highly recommend her and the Cleveland Clinic. We have seen about 39

specialist there!!!!! and been very pleased with the team approach.

> > Sue Rice

> > Mother of -

> > age, 14

> >

> >

> >

> >

> >>

> >>

> >> Elaine Wyllie I'll get correct spelling, I know this is wrong...) Cleveland

Clinic. No question. She is wonderful, brilliant an listens to the family. They

also have the resources to get any testing done quickly.

> >>

> >> Her number is . You will ADORE her.

> >>

> >>

> >>

> >> Sent from my iPhone

> >>

> >> On Nov 11, 2011, at 4:30 PM, " catherine.jacobson "

wrote:

> >>

> >>> Hi All,

> >>>

> >>> We want to get a second opinion and are looking for the best pediatric

epileptologist out there. My son is 2 and a half and has had seizures since he

was 14 weeks old. We have tried about 10 different medications, the ketogenic

diet and the vagus nerve stimulator. The VNS seemed to be working like a miracle

until he went under general anesthesia for ear tube placement and an

adenoidectomy. That night they came back. Our current neurologist is telling me

to just wait and see what happens, and I can't. I need someone else's opinion

and an action plan.

> >>>

> >>> I am looking at the Cleveland Clinic, Mass General, or Orrin Devinsky at

NYU. Does anyone have any recommendations there, or elsewhere?

> >>>

> >>> Thanks for your help,

> >>>

> >>>

> >>>

> >>

> >>

[Guest guest]

Sue

Let me know when you want together! It was a hard decision, and one that was

never a choice until Dr. Wyllie. It took 2 years to get there, and then Mysha

agreed to the decision. We are very lucky, short of seizures Mysha has only

paralysis on her right side and some learning challenges.

I'm pretty open during the week. Send me a message and we can meet somewhere in

the middle!!

Sent from my iPhone

> ,

> Wow that is fantastic to hear about your daughter and her seizures or lack of

them!!!!! We too know Dr. Bingaman, he implanted ' VNS. Unfortunatly,

has never been a candidate for brain surgery- that decision must have

been difficult but sounds like that it was the right one- We are on the south

side (i guess- closer to Akron) but would love to meet for coffee- We are at a

very interesting place in our journey- fourteen was the age that I was always so

worried how we would do it- now that we are here - its not so bad- Our love for

has grown with his age and made what use to be so frightening very do

able and even with the seizures- brings us great joy and perspective of

life- would love to meet up-

> Sue

>

>

>> Sue

>>

>> We are in Cleveland (west side) and my daughter is 14. How interesting. We

went through surgery with Dr. Bingaman on August 11 and - quick, knock on some

wood - have had NO seizures. It's not perfect, it's not easy, but right now I'd

do it again in a moment. Ask me tomorrow and I might change my mind!!

>>

>> If you ever want to get together for coffee let me know!

>>

>>

>>

>> Sent from my iPhone

>>

>>

>>

>>> Hi ,

>>> I have been reading entries from the group about a year now and just read

and take in all the info-and today I will change that so that I can piggy back

on 's words. We have been seeing Dr. Elaine Wyllie (your spelling is

correct) for about 14 years and I feel like we have been through it all. Many

many meds- ketogenic diet and VNS- and she has helped us through it all. I asked

Dr. Dobyns many years ago who he would recommend ( we are in Cleveland) and he

felt we needed to stay at the Clinic and with Dr. Wyllie. She is really well

written in the medical world and has incredible experience with kids like ours.

My son has daily seizures and we are very careful not to snow him. For our son,

we have discovered over the years that we have to look at quality of life- not

just seizure control. I truly can accept all that comes with my guy, . but

I really dis-like anything to do with seizures.

>>> Saying that, Dr. Wyllie has been a really good fit for us. She has

definitely become more compassionate over the years - I too think the world of

her- Highly recommend her and the Cleveland Clinic. We have seen about 39

specialist there!!!!! and been very pleased with the team approach.

>>> Sue Rice

>>> Mother of -

>>> age, 14

>>>

>>>

>>>

>>>

>>>>

>>>>

>>>> Elaine Wyllie I'll get correct spelling, I know this is wrong...) Cleveland

Clinic. No question. She is wonderful, brilliant an listens to the family. They

also have the resources to get any testing done quickly.

>>>>

>>>> Her number is . You will ADORE her.

>>>>

>>>>

>>>>

>>>> Sent from my iPhone

>>>>

>>>> On Nov 11, 2011, at 4:30 PM, " catherine.jacobson "

wrote:

>>>>

>>>>> Hi All,

>>>>>

>>>>> We want to get a second opinion and are looking for the best pediatric

epileptologist out there. My son is 2 and a half and has had seizures since he

was 14 weeks old. We have tried about 10 different medications, the ketogenic

diet and the vagus nerve stimulator. The VNS seemed to be working like a miracle

until he went under general anesthesia for ear tube placement and an

adenoidectomy. That night they came back. Our current neurologist is telling me

to just wait and see what happens, and I can't. I need someone else's opinion

and an action plan.

>>>>>

>>>>> I am looking at the Cleveland Clinic, Mass General, or Orrin Devinsky at

NYU. Does anyone have any recommendations there, or elsewhere?

>>>>>

>>>>> Thanks for your help,

>>>>>

>>>>>

>>>>>

>>>>

>>>>