Re: New to this family -- JANA

[Guest guest]

Jana- your story is SO familiar to mine. My son Noah started on Thanksgiving Day

last year, then the next weekend 3 more little seizures... went from being

totally normal with no family history of seizures, etc. to having hundreds of

seizures a day. He has Doose Syndrome or Myoclonic-Astatic Epilepsy. Please

mention this syndrome to your doctor as it sounds similar to your child! We

started the diet pretty soon, too. It seemed the meds only made Noah worse & so

we got him in to a new neuro that promoted the diet. He was seizure-free before

leaving the hospital. We are in Northwest Indiana and go to Children's Memorial

in Chicago- excellent care there!!

Also- regarding the chiropractic care, I have a brochure that I have been

sending to those that request it- if you are interested please email me your

address and I will send you one right away.

Love,

Mom to Noah- age 3, med-free, & seizure-free on the keto diet

jcb_ag97 jana97@...> wrote:

On October 24th, my family became a part of this extended family as

our almost 3 year old son had a seizure for the first time. After

being checked out in the ER, they diagnosed him with Febrile

Seizures and sent us home. We followed up the next day with his

primary pediatrician who suggested we have an EEG as he felt his

temperature wasn't high enough to have caused the seizure. The EEG

was preformed the next day and showed to be normal. So we took a

deep breath and got back to our normal routine. That following

weekend, our son had 3 additional seizures and we entered the

hospital Halloween. Our son was started on an IV of Dilatin, but it

showed no real progress. Our local doctors were coordinating our

son's treatment with the pediatric nuerologist we later saw when

transferred to his hospital on Tuesday. We preformed another EEG

that was now showing seizure activity. We changed his medication to

Depakote as that was seen as a more effective med for Lennox-Gastaut

Syndrome. We went from a normal almost 3 year old to now a child

that has been diagnosed with multi seizure disorder. There is no

family history, no explanation, no early signs, etc. It was like he

just woke up one morning and now he has it. We left the hospital

after 1 week of evaluation and the generalized seizures were under

control, but we were still having the stares, atonic and myclonic

seizures. At our followup, we chose to switch to Zonagram and

slowly wean our son off of the Depakote. Another 10 days went by

and the seizure had stopped for almost one week when they started

again over the Thanksgiving holiday. We had a checkup that Monday,

and decided that the new med was also not showing any effectiveness

just giving us a " honeymoon " period, so on Monday, Dec. 6th we

entered the hospital again to begin our son on the KETOGENIC Diet.

The diet has gone well so far, our son is taking to it. We

completely stopped the Depokote on Monday and began to decrease the

use of the Clorazapate, therefore our son seems to possibly be going

through detox. He has the shakes now and is still having some drop

seizure activities. He is not stable enough to rejoin his school

because of fear he'll fall and bump his head. We've already lost a

front tooth to one of the seizures he had in the hospital. He was

sitting in a chair and fell over and hit his tooth on the wooden

arm.

I was reading some of the archives and wanted to visit with anyone

whose on the diet? How long before you saw noticable results from

it? Anyone that has a child with Lennox-Gastaut syndrome? What

should we expect? Has tried the chiropractic treatments. We've had

2 different people mention this to us but haven't been provided

anything from our medical doctors on it. Where did you find the

informaiton on the treatment? Is it hard to find a special

pediatric chiropracter that does this type of treatment?

Thanks, JANA

" 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]

Thank you for the words of encouragement. Is helps to know what

others are going through. I will ask our Dr. about the MAE, you are

actually the second person in this thread that mentioned their son

was diagnosed with that instead of the LGS.

Please provide your email address so that I can provide a mailing

address regarding the Chiro information. I am assuming it is

jsprecourt@... but wanted to make sure.

JANA

>

> On October 24th, my family became a part of this extended family

as

> our almost 3 year old son had a seizure for the first time. After

> being checked out in the ER, they diagnosed him with Febrile

> Seizures and sent us home. We followed up the next day with his

> primary pediatrician who suggested we have an EEG as he felt his

> temperature wasn't high enough to have caused the seizure. The

EEG

> was preformed the next day and showed to be normal. So we took a

> deep breath and got back to our normal routine. That following

> weekend, our son had 3 additional seizures and we entered the

> hospital Halloween. Our son was started on an IV of Dilatin, but

it

> showed no real progress. Our local doctors were coordinating our

> son's treatment with the pediatric nuerologist we later saw when

> transferred to his hospital on Tuesday. We preformed another EEG

> that was now showing seizure activity. We changed his medication

to

> Depakote as that was seen as a more effective med for Lennox-

Gastaut

> Syndrome. We went from a normal almost 3 year old to now a child

> that has been diagnosed with multi seizure disorder. There is no

> family history, no explanation, no early signs, etc. It was like

he

> just woke up one morning and now he has it. We left the hospital

> after 1 week of evaluation and the generalized seizures were under

> control, but we were still having the stares, atonic and myclonic

> seizures. At our followup, we chose to switch to Zonagram and

> slowly wean our son off of the Depakote. Another 10 days went by

> and the seizure had stopped for almost one week when they started

> again over the Thanksgiving holiday. We had a checkup that

Monday,

> and decided that the new med was also not showing any

effectiveness

> just giving us a " honeymoon " period, so on Monday, Dec. 6th we

> entered the hospital again to begin our son on the KETOGENIC

Diet.

> The diet has gone well so far, our son is taking to it. We

> completely stopped the Depokote on Monday and began to decrease

the

> use of the Clorazapate, therefore our son seems to possibly be

going

> through detox. He has the shakes now and is still having some

drop

> seizure activities. He is not stable enough to rejoin his school

> because of fear he'll fall and bump his head. We've already lost

a

> front tooth to one of the seizures he had in the hospital. He was

> sitting in a chair and fell over and hit his tooth on the wooden

> arm.

>

> I was reading some of the archives and wanted to visit with anyone

> whose on the diet? How long before you saw noticable results from

> it? Anyone that has a child with Lennox-Gastaut syndrome? What

> should we expect? Has tried the chiropractic treatments. We've

had

> 2 different people mention this to us but haven't been provided

> anything from our medical doctors on it. Where did you find the

> informaiton on the treatment? Is it hard to find a special

> pediatric chiropracter that does this type of treatment?

>

> Thanks, JANA

>

>

>

>

>

> " 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]

Hi, Jana, my email address is jsprecourt@... and I did end up reading a

post from Hill (her son also has MAE). She is a great friend and

the moderator of our Doose Syndrome/MAE webgroup on yahoo. I suggest you join

the group just to read some of the stories- you will find a lot of

similarities!!! It is under " Doosesyndrome " in the yahoo groups.

My son is Noah & you can read his story in the files section... also send me

your address and I will mail out the chiropractic care for seizures brochure.

Please keep in touch, too. I am interested in what your doctor has to say! Where

are you located? If your doctor needs to consult another about MAE, we see Dr.

Laux at Children's Memorial in Chicago and she pretty much specializes in MAE.

Maybe could be very helpful? Wish you the best-

Mom to Noah- age 3, med-free, & seizure-free on keto diet

jcb_ag97 jcb_ag97@...> wrote:

Thank you for the words of encouragement. Is helps to know what

others are going through. I will ask our Dr. about the MAE, you are

actually the second person in this thread that mentioned their son

was diagnosed with that instead of the LGS.

Please provide your email address so that I can provide a mailing

address regarding the Chiro information. I am assuming it is

jsprecourt@... but wanted to make sure.

JANA

>

> On October 24th, my family became a part of this extended family

as

> our almost 3 year old son had a seizure for the first time. After

> being checked out in the ER, they diagnosed him with Febrile

> Seizures and sent us home. We followed up the next day with his

> primary pediatrician who suggested we have an EEG as he felt his

> temperature wasn't high enough to have caused the seizure. The

EEG

> was preformed the next day and showed to be normal. So we took a

> deep breath and got back to our normal routine. That following

> weekend, our son had 3 additional seizures and we entered the

> hospital Halloween. Our son was started on an IV of Dilatin, but

it

> showed no real progress. Our local doctors were coordinating our

> son's treatment with the pediatric nuerologist we later saw when

> transferred to his hospital on Tuesday. We preformed another EEG

> that was now showing seizure activity. We changed his medication

to

> Depakote as that was seen as a more effective med for Lennox-

Gastaut

> Syndrome. We went from a normal almost 3 year old to now a child

> that has been diagnosed with multi seizure disorder. There is no

> family history, no explanation, no early signs, etc. It was like

he

> just woke up one morning and now he has it. We left the hospital

> after 1 week of evaluation and the generalized seizures were under

> control, but we were still having the stares, atonic and myclonic

> seizures. At our followup, we chose to switch to Zonagram and

> slowly wean our son off of the Depakote. Another 10 days went by

> and the seizure had stopped for almost one week when they started

> again over the Thanksgiving holiday. We had a checkup that

Monday,

> and decided that the new med was also not showing any

effectiveness

> just giving us a " honeymoon " period, so on Monday, Dec. 6th we

> entered the hospital again to begin our son on the KETOGENIC

Diet.

> The diet has gone well so far, our son is taking to it. We

> completely stopped the Depokote on Monday and began to decrease

the

> use of the Clorazapate, therefore our son seems to possibly be

going

> through detox. He has the shakes now and is still having some

drop

> seizure activities. He is not stable enough to rejoin his school

> because of fear he'll fall and bump his head. We've already lost

a

> front tooth to one of the seizures he had in the hospital. He was

> sitting in a chair and fell over and hit his tooth on the wooden

> arm.

>

> I was reading some of the archives and wanted to visit with anyone

> whose on the diet? How long before you saw noticable results from

> it? Anyone that has a child with Lennox-Gastaut syndrome? What

> should we expect? Has tried the chiropractic treatments. We've

had

> 2 different people mention this to us but haven't been provided

> anything from our medical doctors on it. Where did you find the

> informaiton on the treatment? Is it hard to find a special

> pediatric chiropracter that does this type of treatment?

>

> Thanks, JANA

>

>

>

>

>

> " 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

>

>

>

>

>