just checking in...3 years seizure free! A positive story!!

[Guest guest]

Tina,

Sounds like my little grandson.

He was diagnosed with landau Kleffner Syndom and the ketogenic diet has been a

Godsend for him.

He talks again and has not had any seizures since being in the hospital and

being put on the diet the first of July.

He was pretty bad with seizures being pretty constant. Was on 5 meds but not

helped much..

He is 5 years old and starting kindergarten this year.

Now he seems like a normal little boy. We are so happy about it. They have

weaned him off 3 of his meds. We still have lamictal and depakote to go.

He tolerates the diet pretty well. If anyone has any questions just e-mail me.

Hallie

Re: just checking in...3 years seizure free! A positive

story!!

There is nothing like a true to life, and current, success story. Either way,

God is good and your story is sure an encouragement for the rest of us! Thanks

for sharing....

, 's mumma

jthejfitz jthejfitz@...> wrote:

Hey all! I was a dedicated member of this group 2 years ago, but

weaned myself off the group slowly after weaning my son off the diet

2 years ago.

For those who do not remember us, my son Ethie started with tonic-

clonic, atonic, myoclonic and petit mal seizures suddenly just befor

he turned three. Five weeks after he started all this, we paniced

and put him on the ketogenic diet and Lamictal. His seizures ended

there with the exception of one breakthrough seizure he had after

licking his brothers cinnamon sugar bagel. 2 monthes after this

treatment was initiated, he had a normal EEG. One year later, after

having clean EEG's since then, Dr. Chez thought we

were " overtreating " him and recommended we start weaning the diet and

see what happens. We took 4 months to wean him, but since june of

2002, he has been on a normal diet (for a 4-6 yr old) and has had no

reoccurence of seizures. We weaned him off the Lamicatal slowly as

well, and has been off that completely since Dec 2003, still with no

seizures at this point!

Ethie is in a special ed Kindergarten, but is now testing " low

normal " with all his speech and language tests, and should be

mainstreamed in the next year.

Was it the Lamictal, the diet,a combination, or just a true miracle?

We will never know, but God is truely good and we have our little

Ethie back again! I wish you all the same good fortune! xox Tina

[Guest guest]

Hi Tina, lovely to see things have gone so well for you!

What was Ethie's actual diagnosis - did you ever get one? Sounds a lot like

with his MAE seizures. If he did have this one, there is a chance of

permanent remission if you can stamp on the seizures soon enough with the right

treatment - so maybe another possibilty to add?

Whatever it was - congratulations, and thanx for the update

----- Original Message -----

From: jthejfitz

Hey all! I was a dedicated member of this group 2 years ago, but

weaned myself off the group slowly after weaning my son off the diet

2 years ago.

For those who do not remember us, my son Ethie started with tonic-

clonic, atonic, myoclonic and petit mal seizures suddenly just befor

he turned three. Five weeks after he started all this, we paniced

and put him on the ketogenic diet and Lamictal. His seizures ended

there with the exception of one breakthrough seizure he had after

licking his brothers cinnamon sugar bagel. 2 monthes after this

treatment was initiated, he had a normal EEG.

[Guest guest]

Hi Tina,

MAE (or Doose syndrome) seizures are tonic clonic, atonic, myoclonic and

absences - that's why your post jumped out at me....keto diet now touted as

first line and most successful treatment for it, most kids treated early on with

the diet quickly 'outgrow' the syndrome, once the seizures can be effectively

stamped on, they fortunately move up into the category of being hopefully

'cured' - 2nd in line treatment wise is ACTH (steroids), and lastly, traditional

AEDs.

Age of onset most comonly 2-4, normal development prior, EEG usually reverts

to normal in between seizures (as opposed to LGS which usually has the

background 1.5-2.5 hz spike/wave and tonic and atypical seizures seen as well)

and most MAE kiddies treated correctly go on to do really very well.

The syndrome is getting to be more and more well known, previously often mis

diagnosed as LGS, which is a big worry, as the meds often recommended for LGS

can actually excacerbate Doose seizures. Er, pick us

A few of us started a yahoo support group 2 yrs ago, membership has now

clocked up to over 100, so it is becoming a lot more widely known that it once

was. When 's LGS diagnosis was changed to MAE in Nov 2000, I think there

was a grand total of 2, maybe 3 research papers available

is one of only 3 kiddies that I know of currently diagnosed in NZ, but

I am thinking that there are a probably a lot more misdiagnosed floating around

out there. A ped neuro or epileptoligist that knows what they are looking for

can differentiate LGS and MAE thru an EEG and clincial history - there are

enough subtle differences to usually get the diagnosis right.

----- Original Message -----

From: FitzGeralds

- We never did get a diagnosis. All tests were normal except his

EEG. We did not get a PET scan since he was on the Keto diet and I

would have had to take him off for 3 weeks before they could do it and

that was not worth it to me. What are " MAE " seizures again, sounds

familiar, but I can't remember? Tina

-----Original Message-----

From: Hill

Sent: Tuesday, August 17, 2004 1:56 AM

Hi Tina, lovely to see things have gone so well for you!

What was Ethie's actual diagnosis - did you ever get one? Sounds a lot

like with his MAE seizures. If he did have this one, there is a

chance of permanent remission if you can stamp on the seizures soon

enough with the right treatment - so maybe another possibilty to add?

Whatever it was - congratulations, and thanx for the update

[Guest guest]

Congratulations Tina, this gives me hope for my little Kristan.

Lamictal has been suggested for my little one and after reading your

story maybe we should try Lamictal in combo with the diet. We've

been on the diet for a year now and have never achieved high ketosis

and just put her on a 4.5:1 ratio to get higher ketosis.

It's so good to hear your story.

Satnam, mom to Kristan, 20 months

Keto kid since August 2003

> Hey all! I was a dedicated member of this group 2 years ago, but

> weaned myself off the group slowly after weaning my son off the

diet

> 2 years ago.

>

> For those who do not remember us, my son Ethie started with tonic-

> clonic, atonic, myoclonic and petit mal seizures suddenly just

befor

> he turned three. Five weeks after he started all this, we paniced

> and put him on the ketogenic diet and Lamictal. His seizures ended

> there with the exception of one breakthrough seizure he had after

> licking his brothers cinnamon sugar bagel. 2 monthes after this

> treatment was initiated, he had a normal EEG. One year later,

after

> having clean EEG's since then, Dr. Chez thought we

> were " overtreating " him and recommended we start weaning the diet

and

> see what happens. We took 4 months to wean him, but since june of

> 2002, he has been on a normal diet (for a 4-6 yr old) and has had

no

> reoccurence of seizures. We weaned him off the Lamicatal slowly as

> well, and has been off that completely since Dec 2003, still with

no

> seizures at this point!

>

> Ethie is in a special ed Kindergarten, but is now testing " low

> normal " with all his speech and language tests, and should be

> mainstreamed in the next year.

>

> Was it the Lamictal, the diet,a combination, or just a true

miracle?

> We will never know, but God is truely good and we have our little

> Ethie back again! I wish you all the same good fortune! xox Tina

[Guest guest]

Hi,tina,

just read your email and im probably going to sound really stupid now but

what is MAE/doose syndrome and what is LGS.My daughter is 12 and has just

started the keto diet on the 10th August this year,she has tonic

clonic,myclonic and absence epilepsy.Her eeg reports have told us that her eegs

are

remarkably abnormal??? and nobody can tell us why she is this way,she also has

learning disabilities and language delay.

hope to hear from you soon,Leeanne,mum to aged 12.

[Guest guest]

Hi,tina,

just read your email and im probably going to sound really stupid now but

what is MAE/doose syndrome and what is LGS.My daughter is 12 and has just

started the keto diet on the 10th August this year,she has tonic

clonic,myclonic and absence epilepsy.Her eeg reports have told us that her eegs

are

remarkably abnormal??? and nobody can tell us why she is this way,she also has

learning disabilities and language delay.

hope to hear from you soon,Leeanne,mum to aged 12.

[Guest guest]

Hi,tina,

just read your email and im probably going to sound really stupid now but

what is MAE/doose syndrome and what is LGS.My daughter is 12 and has just

started the keto diet on the 10th August this year,she has tonic

clonic,myclonic and absence epilepsy.Her eeg reports have told us that her eegs

are

remarkably abnormal??? and nobody can tell us why she is this way,she also has

learning disabilities and language delay.

hope to hear from you soon,Leeanne,mum to aged 12.

[Guest guest]

Leeanne

hill just educated me on Doose syndrome, I did not really know of

it before that, so maybe she will pipe in on this syndrome. She told me

it had a usual onset btw 2-4 years old, and the best first treatment is

the keto diet, as many antiepileptic drugs exacerbate the problem. I

think that may be why Ethan did so well after we started the diet 5

weeks after the seizures started.! That's all know. Sorry -Tina

Re: just checking in...3 years seizure free! A

positive story!!

Hi,tina,

just read your email and im probably going to sound really stupid now

but

what is MAE/doose syndrome and what is LGS.My daughter is 12 and

has just

started the keto diet on the 10th August this year,she has tonic

clonic,myclonic and absence epilepsy.Her eeg reports have told us that

her eegs are

remarkably abnormal??? and nobody can tell us why she is this way,she

also has

learning disabilities and language delay.

hope to hear from you soon,Leeanne,mum to aged 12.

[Guest guest]

Leeanne

hill just educated me on Doose syndrome, I did not really know of

it before that, so maybe she will pipe in on this syndrome. She told me

it had a usual onset btw 2-4 years old, and the best first treatment is

the keto diet, as many antiepileptic drugs exacerbate the problem. I

think that may be why Ethan did so well after we started the diet 5

weeks after the seizures started.! That's all know. Sorry -Tina

Re: just checking in...3 years seizure free! A

positive story!!

Hi,tina,

just read your email and im probably going to sound really stupid now

but

what is MAE/doose syndrome and what is LGS.My daughter is 12 and

has just

started the keto diet on the 10th August this year,she has tonic

clonic,myclonic and absence epilepsy.Her eeg reports have told us that

her eegs are

remarkably abnormal??? and nobody can tell us why she is this way,she

also has

learning disabilities and language delay.

hope to hear from you soon,Leeanne,mum to aged 12.