Re: myoclonic epilepsies, Jenn (and others)

[Guest guest]

Wow, that's a lot of info, will have to take some time to sort it

out... Our daughter, Paige has never been given a specific label for

her seizures. She has generalized tonic/clonic, myoclonic, and

absent seizures. While she has slowed in her progress, she has

never " lost " skills. Her seizures started at 1 year of age, with the

first one being a tonic/clonic. Her myoclonic then began shortly

thereafter... She has been tested genetically, but I guess nothing

was wrong, as nothing ever came of it. She also has been tested for

Myoclonic Epilepsy with Cherry Red Spot... that came back ok too.

What other things should we have her tested for??? She also is/was

very photosensitive... UGH! I would love to gain more information,

thankyou for my start!

, Mom to Paige 7 years old, and Tricia 5 years old

[Guest guest]

,

You will probably find that if Paige was tested for cherry red spots, then

other degenerative diseases were looked for at the same time. Sounds like

you need to question the Docs a lot more about exactly what they have and

haven't done. If she hasn't 'lost' skills, I imagine they are fairly

confident that nothing more sinister than intractable epilepsy is going on,

like that isn't bad enough!!

You do need a diagnosis though, and the right one, it is a matter of being

sure that your Drs have the neccssary ability and experience to find the

correct one. It may be that she really doesn't 'fit' any category, just be

sure you are confident of that, and that more opinions wouldn't be

worthwhile,

Hill, mother to , 5, in NZ

P.S, most myoclonic epilepsy syndromes include photosensitivity, as does

MAE, but does not show this on the eeg. He has had drops however,

following a flash from a camera. Pass!!

Re: myoclonic epilepsies, Jenn (and others)

> Wow, that's a lot of info, will have to take some time to sort it

> out... Our daughter, Paige has never been given a specific label for

> her seizures. She has generalized tonic/clonic, myoclonic, and

> absent seizures. While she has slowed in her progress, she has

> never " lost " skills. Her seizures started at 1 year of age, with the

> first one being a tonic/clonic. Her myoclonic then began shortly

> thereafter... She has been tested genetically, but I guess nothing

> was wrong, as nothing ever came of it. She also has been tested for

> Myoclonic Epilepsy with Cherry Red Spot... that came back ok too.

> What other things should we have her tested for??? She also is/was

> very photosensitive... UGH! I would love to gain more information,

> thankyou for my start!

> , Mom to Paige 7 years old, and Tricia 5 years old

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

doesn't seem to have problems with photosensitivity either.

Altho he has had a few drop seizures in front of the tv but this was during

a bad time and seemed to have seizures anywhere those days.

Jenn

richard & susan hill wrote:

,

You will probably find that if Paige was tested for cherry red

spots, then

other degenerative diseases were looked for at the same time. Sounds

like

you need to question the Docs a lot more about exactly what they

have and

haven't done. If she hasn't 'lost' skills, I imagine they are fairly

confident that nothing more sinister than intractable epilepsy

is going on,

like that isn't bad enough!!

You do need a diagnosis though, and the right one, it is a matter

of being

sure that your Drs have the neccssary ability and experience to

find the

correct one. It may be that she really doesn't 'fit' any category,

just be

sure you are confident of that, and that more opinions wouldn't

be

worthwhile,

Hill, mother to , 5, in NZ

P.S, most myoclonic epilepsy syndromes include photosensitivity,

as does

MAE, but does not show this on the eeg. He has had drops

however,

following a flash from a camera. Pass!!

Re: myoclonic epilepsies, Jenn (and others)

> Wow, that's a lot of info, will have to take some time to sort

it

> out... Our daughter, Paige has never been given a specific

label for

> her seizures. She has generalized tonic/clonic, myoclonic,

and

> absent seizures. While she has slowed in her progress,

she has

> never "lost" skills. Her seizures started at 1 year of

age, with the

> first one being a tonic/clonic. Her myoclonic then began

shortly

> thereafter... She has been tested genetically, but I guess

nothing

> was wrong, as nothing ever came of it. She also has been

tested for

> Myoclonic Epilepsy with Cherry Red Spot... that came back

ok too.

> What other things should we have her tested for??? She

also is/was

> very photosensitive... UGH! I would love to gain

more information,

> thankyou for my start!

> , Mom to Paige 7 years old, and Tricia 5 years old

>

>

>

>

>

> "The Ketogenic Diet....a realistic treatment option,

NOT just a last

resort!"

>

>

List is for parent to parent support only.

>

It is important to get medical advice from a professional

keto team!

>

Subscribe: ketogenic-subscribe

>

Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

Thankyou! I did finally get a hold of the Neuro, and asked about

LGS, PME, etc... I was told that she does not fit LGS, based only on

her EEG {{{big sigh here!}}} and that since she's not " lost " any

skills that she doesn't fit the PME's... In short, I don't know much

more. She told me that yes, Metobolic testing had been done (I sure

don't recall that one), but that it all came back normal. We've

taken Paige to 6 different Nuero's but I only trusted 4 of them.

None of whom have ever been able to give Paige a specific diagnosis.

Is there perhaps some reason??? This one just told me, when I asked

that " she's a tough cookie, and they are keeping a close eye on her "

whatever that means! rolling my eyes here! LOL She has been to

Legacy Emanuel; OHSU; J Hopkins; and Stanford... I would imagine one

of them would have been able to give us a diagnosis, but yet they

didn't...

The current neuro did say that her predominant seizure type was

Absent, then Tonic/Clonic, and that they didn't see any myoclonics on

her last EEG, but because we see them, they made that notation.

> ,

> You will probably find that if Paige was tested for cherry red

spots, then

> other degenerative diseases were looked for at the same time.

Sounds like

> you need to question the Docs a lot more about exactly what they

have and

> haven't done. If she hasn't 'lost' skills, I imagine they are fairly

> confident that nothing more sinister than intractable epilepsy is

going on,

> like that isn't bad enough!!

> You do need a diagnosis though, and the right one, it is a matter

of being

> sure that your Drs have the neccssary ability and experience to

find the

> correct one. It may be that she really doesn't 'fit' any category,

just be

> sure you are confident of that, and that more opinions wouldn't be

> worthwhile,

> Hill, mother to , 5, in NZ

> P.S, most myoclonic epilepsy syndromes include photosensitivity, as

does

> MAE, but does not show this on the eeg. He has had drops

however,

> following a flash from a camera. Pass!!

> Re: myoclonic epilepsies, Jenn (and others)

>

>

> > Wow, that's a lot of info, will have to take some time to sort it

> > out... Our daughter, Paige has never been given a specific label

for

> > her seizures. She has generalized tonic/clonic, myoclonic, and

> > absent seizures. While she has slowed in her progress, she has

> > never " lost " skills. Her seizures started at 1 year of age, with

the

> > first one being a tonic/clonic. Her myoclonic then began shortly

> > thereafter... She has been tested genetically, but I guess

nothing

> > was wrong, as nothing ever came of it. She also has been tested

for

> > Myoclonic Epilepsy with Cherry Red Spot... that came back ok too.

> > What other things should we have her tested for??? She also

is/was

> > very photosensitive... UGH! I would love to gain more

information,

> > thankyou for my start!

> > , Mom to Paige 7 years old, and Tricia 5 years old

> >

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

last

> resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

professional

> keto team!

> > Subscribe: ketogenic-subscribe@y...

> > Unsubscribe: ketogenic-unsubscribe@y...

> >

> >

> >

> >

[Guest guest]

,

It sounds like we're beginning the same diagnosis

drama that you've already been through! Ted's current

neuro (we like him quite a bit), Dr. Schimschock, has

diagnosed Ted with intractible generalized myoclonic

epilepsy. But, because Ted is not responding to

medications or to the diet, he is ready to begin

testing for the " real " cause of the seizures (if there

is one). We are also suspicious that his seizures are

not generalized, as he has specific spasms in his left

arm and leg during a seizure. We have discussed with

him the possibility of getting a second opinion. But,

it sounds like that didn't do much good for you...

Do you have any suggestions for us, based on what

you've been through to date?

Thanks in advance,

Kisa (mom to Ted, 2 yrs)

--- blckmontecarlo3 wrote:

> Thankyou! I did finally get a hold of the Neuro,

> and asked about

> LGS, PME, etc... I was told that she does not fit

> LGS, based only on

> her EEG {{{big sigh here!}}} and that since she's

> not " lost " any

> skills that she doesn't fit the PME's... In short,

> I don't know much

> more. She told me that yes, Metobolic testing had

> been done (I sure

> don't recall that one), but that it all came back

> normal. We've

> taken Paige to 6 different Nuero's but I only

> trusted 4 of them.

> None of whom have ever been able to give Paige a

> specific diagnosis.

> Is there perhaps some reason??? This one just told

> me, when I asked

> that " she's a tough cookie, and they are keeping a

> close eye on her "

> whatever that means! rolling my eyes here! LOL She

> has been to

> Legacy Emanuel; OHSU; J Hopkins; and Stanford... I

> would imagine one

> of them would have been able to give us a diagnosis,

> but yet they

> didn't...

> The current neuro did say that her predominant

> seizure type was

> Absent, then Tonic/Clonic, and that they didn't see

> any myoclonics on

> her last EEG, but because we see them, they made

> that notation.

>

>

> > ,

> > You will probably find that if Paige was tested

> for cherry red

> spots, then

> > other degenerative diseases were looked for at the

> same time.

> Sounds like

> > you need to question the Docs a lot more about

> exactly what they

> have and

> > haven't done. If she hasn't 'lost' skills, I

> imagine they are fairly

> > confident that nothing more sinister than

> intractable epilepsy is

> going on,

> > like that isn't bad enough!!

> > You do need a diagnosis though, and the right one,

> it is a matter

> of being

> > sure that your Drs have the neccssary ability and

> experience to

> find the

> > correct one. It may be that she really doesn't

> 'fit' any category,

> just be

> > sure you are confident of that, and that more

> opinions wouldn't be

> > worthwhile,

> > Hill, mother to , 5, in NZ

> > P.S, most myoclonic epilepsy syndromes include

> photosensitivity, as

> does

> > MAE, but does not show this on the eeg. He

> has had drops

> however,

> > following a flash from a camera. Pass!!

> > Re: myoclonic epilepsies,

> Jenn (and others)

> >

> >

> > > Wow, that's a lot of info, will have to take

> some time to sort it

> > > out... Our daughter, Paige has never been given

> a specific label

> for

> > > her seizures. She has generalized tonic/clonic,

> myoclonic, and

> > > absent seizures. While she has slowed in her

> progress, she has

> > > never " lost " skills. Her seizures started at 1

> year of age, with

> the

> > > first one being a tonic/clonic. Her myoclonic

> then began shortly

> > > thereafter... She has been tested genetically,

> but I guess

> nothing

> > > was wrong, as nothing ever came of it. She also

> has been tested

> for

> > > Myoclonic Epilepsy with Cherry Red Spot... that

> came back ok too.

> > > What other things should we have her tested

> for??? She also

> is/was

> > > very photosensitive... UGH! I would love to

> gain more

> information,

> > > thankyou for my start!

> > > , Mom to Paige 7 years old, and Tricia 5

> years old

> > >

> > >

> > >

> > >

> > >

> > > " The Ketogenic Diet....a realistic treatment

> option, NOT just a

> last

> > resort! "

> > >

> > > List is for parent to parent

> support only.

> > > It is important to get medical

> advice from a

> professional

> > keto team!

> > > Subscribe:

> ketogenic-subscribe@y...

> > > Unsubscribe:

> ketogenic-unsubscribe@y...

> > >

> > >

> > >

> > >

[Guest guest]

Kisa, I think that was one of the worst times... having to think

that Paige might have a reason for her seizures. I've been told if

you find a reason it's generally not good. I really liked Dr S. when

we went there, I also trust implicitly Dr Koch there at OHSU. If you

were going to do a second opinion, that's who I would go to.

While it is nerve wracking to wait for answers, I would definitly get

an appointment within the (sp)Cacey Eye Institute and have him

checked for Myoclonic Epilepsy with a Cherry Red Spot, I would

request genetic testing, Metobolic testing, etc... Even though every

thing came back okay for us... it still gives me peace of mind.

Perhaps Paige just has idiopathic seizures...

Good luck, from the various places we've been, I would say you are in

a good location for Neuro.

> ,

> It sounds like we're beginning the same diagnosis

> drama that you've already been through! Ted's current

> neuro (we like him quite a bit), Dr. Schimschock, has

> diagnosed Ted with intractible generalized myoclonic

> epilepsy. But, because Ted is not responding to

> medications or to the diet, he is ready to begin

> testing for the " real " cause of the seizures (if there

> is one). We are also suspicious that his seizures are

> not generalized, as he has specific spasms in his left

> arm and leg during a seizure. We have discussed with

> him the possibility of getting a second opinion. But,

> it sounds like that didn't do much good for you...

>

> Do you have any suggestions for us, based on what

> you've been through to date?

>

[Guest guest]

Thanks, .

BTW... I accidentally posted two messages that sound

about the same (I thought the first was cancelled...

and tried to recreate it)... sorry for any confusion!

Thanks again for your advice. We have an appt with

Dr. S on Monday, I'll ask about the Cherry Red Spot

and other testing then.

--- blckmontecarlo3 wrote:

> Kisa, I think that was one of the worst times...

> having to think

> that Paige might have a reason for her seizures.

> I've been told if

> you find a reason it's generally not good. I really

> liked Dr S. when

> we went there, I also trust implicitly Dr Koch there

> at OHSU. If you

> were going to do a second opinion, that's who I

> would go to.

>

> While it is nerve wracking to wait for answers, I

> would definitly get

> an appointment within the (sp)Cacey Eye Institute

> and have him

> checked for Myoclonic Epilepsy with a Cherry Red

> Spot, I would

> request genetic testing, Metobolic testing, etc...

> Even though every

> thing came back okay for us... it still gives me

> peace of mind.

> Perhaps Paige just has idiopathic seizures...

>

> Good luck, from the various places we've been, I

> would say you are in

> a good location for Neuro.

>

>

>

>

> > ,

> > It sounds like we're beginning the same diagnosis

> > drama that you've already been through! Ted's

> current

> > neuro (we like him quite a bit), Dr. Schimschock,

> has

> > diagnosed Ted with intractible generalized

> myoclonic

> > epilepsy. But, because Ted is not responding to

> > medications or to the diet, he is ready to begin

> > testing for the " real " cause of the seizures (if

> there

> > is one). We are also suspicious that his seizures

> are

> > not generalized, as he has specific spasms in his

> left

> > arm and leg during a seizure. We have discussed

> with

> > him the possibility of getting a second opinion.

> But,

> > it sounds like that didn't do much good for you...

> >

> > Do you have any suggestions for us, based on what

> > you've been through to date?

> >

>

>

>

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