Seizures ok - now for the learning!!

[Guest guest]

Hi there - can anyone out there advise?

My son 5 has been an MCT-keto kid for a year now. HUGE

improvement in his epilepsy - he hasn't had a tonic clonic whilst

awake THIS YEAR yee-hah. He still has the odd one at night, and

we've recently had a few spates of myoclonic / atonic seizures (poss

due to the fact he's nearly weaned off Epilim (Sodium Valproate if

it's not called that near you!!). He's also on 20mg BD Lamotrigine

which is our next weaning target.

Anyhow, I'm well pleased at the effect on his epilepsy, but I guess

am greedy and would really like to make inroads in his learning

difficulties now too! He's not got back to the skills he had pre

Lennox-Gastaut at 3.5 reading, writing, speech etc. We've tried

fish oils, which seems to make a slight improvement, but wondered if

any of you keto-carers out there have any insight into this problem -

has anything worked for you?

Ta very much

Gail

[Guest guest]

We have found some def fallout from previous seizure activity in the areas of

auditory processing here - I haven't had formally assessed in that dept

yet, (he is 8) but everything I have read about any difficulties he is having at

school has pointed me in that direction. (Well and his topomax, but I think we

have a combination problem happening here)

It means he is having some trouble taking too much in at once, difficulty

following instructions or absorbing information if there is a lot going on in

his class at the same time, that sort of thing....

Because he missed so much of his first 2 years at school with seizures,

hospitalisation etc, so only really starting to learn again during 2004, I have

requested he be held back next yr in an attempt to 'catch up'. We will be

requesting specific stratgeties be put in place - like a period each day of one

on one quiet learning time for the important basics, very repetitive teaching

methods, focussing a lot on visual learning to make sure eveything sinks in and

stays there.....and continued OT and PT in particular to help improve his

handwriting (motor skills were also affected, but they have improved hugely in

the past yr).

At age 5, I would say if 's seizures are now pretty well under control

you will have 'time' to help him catch up, especially with appropriate speech

therapy, (which involves much more than just correct articulation - receptive

speech skills and comprehension etc as well) O/T and P/T advisors on board.

I am not really up with the play as far as what supplements might aid in

concentration, memory etc, my strategy here with has mainly been going

back to the basics with learning, starting from scratch and slowly building back

up again, with the school's help of course, and with any help I have been able

to get for him from various agencies dealing in therapies.

Computer programs that are fun but with structured learning thrown in, (same

deal with videos) have been a big help too.

I think time is going to be the main healer, (we were told to look at 's

brain as a type of muscle that has been torn and needs time to heal but one that

also needs to be exercised) and the past 11 mths of seizure freedom has seen

that start to happen.

Lots of repetition repetition repetition

And yes, I'm greedy too....

PS - Are the myo/atonic seizures the myoclonic astatic seizures of MAE

syndrome, ('s diagnosis) - just wondering if that could be 's

diagnosis rather than LGS, the 2 are quite commonly misdiagnosed. Tcs, myos,

drops and absences are the main MAE seizure types.

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

From: Gail

Hi there - can anyone out there advise?

My son 5 has been an MCT-keto kid for a year now. HUGE

improvement in his epilepsy - he hasn't had a tonic clonic whilst

awake THIS YEAR yee-hah. He still has the odd one at night, and

we've recently had a few spates of myoclonic / atonic seizures (poss

due to the fact he's nearly weaned off Epilim (Sodium Valproate if

it's not called that near you!!). He's also on 20mg BD Lamotrigine

which is our next weaning target.

Anyhow, I'm well pleased at the effect on his epilepsy, but I guess

am greedy and would really like to make inroads in his learning

difficulties now too! He's not got back to the skills he had pre

Lennox-Gastaut at 3.5 reading, writing, speech etc. We've tried

fish oils, which seems to make a slight improvement, but wondered if

any of you keto-carers out there have any insight into this problem -

has anything worked for you?

Ta very much

Gail

[Guest guest]

..............

> PS - Are the myo/atonic seizures the myoclonic astatic seizures

of MAE syndrome, ('s diagnosis) - just wondering if that

could be 's diagnosis rather than LGS, the 2 are quite

commonly misdiagnosed. Tcs, myos, drops and absences are the main

MAE seizure types.

>

Thank you SO much for this " P.S. " !

I'd never come across MAE before, so wandered off round the web to

find out more. I found a very interesting article at:

http://www.epilepsy.org/ctf/myoclonic_astatic_child.html

This SO fits in with 's history - we were given the diagnosis

of LGS without the EEG back up because 's non convulsive

activity made the identifiation of the characteristic spike wave

pattern unreadable. After 6 months on the diet thee EEG had

improved lots, but still didn't conclusively have the LGS pattern.

I know the long term prognosis is still very harsh, but it sure

beats the 5% chance of " near normal intellectual function " that LGS

offers!

This is a bit off topic for the keto site - could you please email

me directly with any other bits and bobs of info you've picked up

over the years - I'd really like to find out more about 's

journey through the horrid disease!

Thank you so much for replying - I feel like a clockwork toy that's

just been wound up again, like I've got a BIT of new hope!

cheers

Gail

[Guest guest]

gail,

our matthew, (now 17) supposedly had lennox-gastaut

syndrome when he was 5 too. he was on epilim at the

time and lost all speech. when he was taken off epilim

he no longer had the syndrome.... go figure. he still

has not got his speech back but i'm hoping that you

will have more luck as you are doing the diet at a

much earlier age than we could. have you looked at the

site www.matthewsfriends.org ? it is a uk based site

and people have been raving about the benefits of hemp

oil, especially regarding development. unfortunately

it is not sold in australia, except for cosmetic

purposes. i know you can get it in the us from most

health food stores. or do a search for hemp oil. good

luck, andrea.

--- Gail gailian_hall@...> wrote:

>

> Hi there - can anyone out there advise?

>

> My son 5 has been an MCT-keto kid for a year

> now. HUGE

> improvement in his epilepsy - he hasn't had a tonic

> clonic whilst

> awake THIS YEAR yee-hah. He still has the odd one

> at night, and

> we've recently had a few spates of myoclonic /

> atonic seizures (poss

> due to the fact he's nearly weaned off Epilim

> (Sodium Valproate if

> it's not called that near you!!). He's also on 20mg

> BD Lamotrigine

> which is our next weaning target.

>

> Anyhow, I'm well pleased at the effect on his

> epilepsy, but I guess

> am greedy and would really like to make inroads in

> his learning

> difficulties now too! He's not got back to the

> skills he had pre

> Lennox-Gastaut at 3.5 reading, writing, speech etc.

> We've tried

> fish oils, which seems to make a slight improvement,

> but wondered if

> any of you keto-carers out there have any insight

> into this problem -

> has anything worked for you?

>

>

> Ta very much

>

> Gail

>

>

>

>

>

__________________________________________________

[Guest guest]

Gail,

The losing all speech that Matther has had sounds a little like our Tanner. He

is 5 and was diagnosed with Landau Kleffner Syndrome. It is rare and the child

usually impoves much after they reach puberty. It was diagnoses by the EEG and

losing the speech. A lot of doctors have never seen a case of it.

Tanner can talk again because of the diet.

Hallie

Re: Seizures ok - now for the learning!!

gail,

our matthew, (now 17) supposedly had lennox-gastaut

syndrome when he was 5 too. he was on epilim at the

time and lost all speech. when he was taken off epilim

he no longer had the syndrome.... go figure. he still

has not got his speech back but i'm hoping that you

will have more luck as you are doing the diet at a

much earlier age than we could. have you looked at the

site www.matthewsfriends.org ? it is a uk based site

and people have been raving about the benefits of hemp

oil, especially regarding development. unfortunately

it is not sold in australia, except for cosmetic

purposes. i know you can get it in the us from most

health food stores. or do a search for hemp oil. good

luck, andrea.

--- Gail gailian_hall@...> wrote:

>

> Hi there - can anyone out there advise?

>

> My son 5 has been an MCT-keto kid for a year

> now. HUGE

> improvement in his epilepsy - he hasn't had a tonic

> clonic whilst

> awake THIS YEAR yee-hah. He still has the odd one

> at night, and

> we've recently had a few spates of myoclonic /

> atonic seizures (poss

> due to the fact he's nearly weaned off Epilim

> (Sodium Valproate if

> it's not called that near you!!). He's also on 20mg

> BD Lamotrigine

> which is our next weaning target.

>

> Anyhow, I'm well pleased at the effect on his

> epilepsy, but I guess

> am greedy and would really like to make inroads in

> his learning

> difficulties now too! He's not got back to the

> skills he had pre

> Lennox-Gastaut at 3.5 reading, writing, speech etc.

> We've tried

> fish oils, which seems to make a slight improvement,

> but wondered if

> any of you keto-carers out there have any insight

> into this problem -

> has anything worked for you?

>

>

> Ta very much

>

> Gail

>

>

>

>

>

__________________________________________________

[Guest guest]

Hallie,

Thanks for the reply - LKS was one of 's earliest dx, but in

fact his initial complete speech loss was due to him being in non

convulsive status. He is now globally delayed and is working under

a dx of Lennox Gastaut, although Doose / Myaclonic-Astatic Epilepsy

(MAE) would appear to be a more accurate " label "

Glad Tanner's doing well on the diet - it's piggin hard work, but so

worth it when you see a glimpse of your old child coming back out

again!

Gail

>

> >

> > Hi there - can anyone out there advise?

> >

> > My son 5 has been an MCT-keto kid for a year

> > now. HUGE

> > improvement in his epilepsy - he hasn't had a tonic

> > clonic whilst

> > awake THIS YEAR yee-hah. He still has the odd one

> > at night, and

> > we've recently had a few spates of myoclonic /

> > atonic seizures (poss

> > due to the fact he's nearly weaned off Epilim

> > (Sodium Valproate if

> > it's not called that near you!!). He's also on 20mg

> > BD Lamotrigine

> > which is our next weaning target.

> >

> > Anyhow, I'm well pleased at the effect on his

> > epilepsy, but I guess

> > am greedy and would really like to make inroads in

> > his learning

> > difficulties now too! He's not got back to the

> > skills he had pre

> > Lennox-Gastaut at 3.5 reading, writing, speech etc.

> > We've tried

> > fish oils, which seems to make a slight improvement,

> > but wondered if

> > any of you keto-carers out there have any insight

> > into this problem -

> > has anything worked for you?

> >

> >

> > Ta very much

> >

> > Gail

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I was thinking the same thing reading your post Gail. Mike was at first given a

'possible' diagnosis of LGS, MAE or another one, but they were leaning more

towards LGS. Now, that diagnosis isnt even 'in there' anymore and we are leaning

much more towards MAE, altho the neuro still wont give me a definite diagnosis

(this is on my list of things to have accomplished in 2005!)

Happy to hear he is doing so well on the MCT/keto diet. This is the diet my son

is on as well (MCT/cream keto)

Jenn

Re: Seizures ok - now for the learning!!

PS - Are the myo/atonic seizures the myoclonic astatic seizures of MAE

syndrome, ('s diagnosis) - just wondering if that could be 's

diagnosis rather than LGS, the 2 are quite commonly misdiagnosed. Tcs, myos,

drops and absences are the main MAE seizure types.

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

From: Gail

Hi there - can anyone out there advise?

My son 5 has been an MCT-keto kid for a year now. HUGE

improvement in his epilepsy - he hasn't had a tonic clonic whilst

awake THIS YEAR yee-hah.

[Guest guest]

Hi Gail,

I cam across a book written by a woman who used to run a gifted program

that I think is fabulous. It is called Upside-own Brilliance: The

Visual-Spatial Learner (Amazon.com) Although most of the antidotes are

about gifted children, the techniques for enhancing learning are

appropriate to any child who learns best visually and not sequentially.

Many of my friends who have Autistic children also love the book. I

purchased the book originally to give me ideas for Claire, my special

girl but I found out after reading the descriptions of Vis.-Spat

Learners that my oldest daughter fits into this category.

Kiera at 10 years old still can't seem to get all of her homework in and

out of her backpack. Her room is a constant disaster, yet she knows

exactly where everything is at. She is an exceptional math student but

can't spell to save her life. The book provided ideas to help her and

Claire with sequencing and organization. I highly recommend it to

anyone with any child who " sees the world differently. "

P.S. If any of the parents out here are Tetris fanatics you should read

this book for yourself.

Upside-Down Brilliance: The Visual Spatial Learner

by Kreger Silverman

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________________________________

From: Gail

Sent: Wednesday, December 01, 2004 6:35 PM

To: ketogenic

Subject: Seizures ok - now for the learning!!

Hi there - can anyone out there advise?

My son 5 has been an MCT-keto kid for a year now. HUGE

improvement in his epilepsy - he hasn't had a tonic clonic whilst

awake THIS YEAR yee-hah. He still has the odd one at night, and

we've recently had a few spates of myoclonic / atonic seizures (poss

due to the fact he's nearly weaned off Epilim (Sodium Valproate if

it's not called that near you!!). He's also on 20mg BD Lamotrigine

which is our next weaning target.

Anyhow, I'm well pleased at the effect on his epilepsy, but I guess

am greedy and would really like to make inroads in his learning

difficulties now too! He's not got back to the skills he had pre

Lennox-Gastaut at 3.5 reading, writing, speech etc. We've tried

fish oils, which seems to make a slight improvement, but wondered if

any of you keto-carers out there have any insight into this problem -

has anything worked for you?

Ta very much

Gail

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

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