New to this family -- With Many Questions?

[Guest guest]

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

[Guest guest]

Jana,

First welcome to the family. We started having

seizures at 4 months of age. One one day, one a few

days later and then a full blown seizure at the

hospital and then they started coming full swing, up

to a hundred and fifty a day. We spent four months in

the hospital trying to get them undercontrol and at

first were on 12 meds. We tried the diet but did not

make much progress and were loosing weight and not

growing. We got off the diet and are currently on

Trileptal and Lamictal. We have finally gotten better

seizure control and finally gainign weight and

growing. We have no diagnosis and they can not tell us

why she has seizures and what is causing them. We do

not even know exactly what kind of seizures she is

having. She had never ran a fever until after she

started having seizures. So many questions and

no answers. Ill try to help where I can.

Kristi Mann (mom to Wyaema 26 months, Keto Kid March

to December 2003)

=====

Kristi Mann

Smile make everyone wonder what your thinking

May God Bless you today, tomorrow and always

[Guest guest]

Any help is greatly appreciated. It hurts but also provides comfort

to know we are not the only person out there. The Support Group is

a place I turned to add value to what I receive from the doctors.

They are all very intelligent people but unfortunately even with all

their degrees, they have no hard fast answer nor fix for this

illness. It isn't like getting the flu, ear infection, etc. They

have answers, can say why, etc. Epilepsy their is not always a

reason or explanation and with my personality of always wanting to

know why something is, this has been extremely hard. Thanks again

for sharing your experience. If nothing else it reminds me we are

not in this alone.

JANA

> Jana,

>

> First welcome to the family. We started having

> seizures at 4 months of age. One one day, one a few

> days later and then a full blown seizure at the

> hospital and then they started coming full swing, up

> to a hundred and fifty a day. We spent four months in

> the hospital trying to get them undercontrol and at

> first were on 12 meds. We tried the diet but did not

> make much progress and were loosing weight and not

> growing. We got off the diet and are currently on

> Trileptal and Lamictal. We have finally gotten better

> seizure control and finally gainign weight and

> growing. We have no diagnosis and they can not tell us

> why she has seizures and what is causing them. We do

> not even know exactly what kind of seizures she is

> having. She had never ran a fever until after she

> started having seizures. So many questions and

> no answers. Ill try to help where I can.

>

> Kristi Mann (mom to Wyaema 26 months, Keto Kid March

> to December 2003)

>

> =====

>

> Kristi Mann

>

> Smile make everyone wonder what your thinking

>

> May God Bless you today, tomorrow and always

[Guest guest]

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

From: jcb_ag97

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

[Guest guest]

Woops - hit send last time without writing anything

Hi Jana,

Similar story here with my son - completely normal development up to

age 3, then the seizures hit and life changed literally overnight.

If you have recently stopped the depakote, and are also weaning clorazepate

(tranxene?) you will probably still be seeing fallout from that - so until any

withdrawal seizures have settled, you may be waiitng for a while to see just how

effective the diet will be seizure wise.

Clorazepate is a benzodiazepine med, so you are quite right about a possible

detox process happening, they are all very addictive meds and very difficult to

wean. The longer they have been on them, the harder this process is, but it

sounds like it has only been fairly short term so far, hopefully this will make

the wean a bit easier than it otherwise would be.

You are fortunate to have Drs who rcommended the diet so early on in the

course of your son's epilepsy, we waited a long 18 mths with many toxic med

cocktails before starting keto - our biggest regret is not starting sooner into

the seizure nightmare.

Is he still on the zonegran? If so, watch his blood gases - this is one of the

meds that can cause metabolic acidosis when used in conjunction with keto - both

are acid inducing treatments, as are topomax, diamox, and to a lesser extent,

depakote.

Re his LGS diagnosis - was given this one as well when his seizures

first started, but it was changed shortly afterwards to Doose Syndrome

(Myoclonic Astatic Epilepsy), which is a similar childhood syndrome (as in a

mixed seizure disorder, onset most commonly age 2-4 yrs) but with some subtle

differences. These are - always normal development prior to seizures starting,

TCs often the presenting seizure type which then get taken over or joined by

myoclonics, absences and drops. Lack of tonic seizures (unless as a paradoxical

seizure response to benzodiazepine meds as happened with , but that didn't

happen till he had been on them for quite a while) at onset is one of the

differentiating factors, and there are usually no focal seizures at that point

either. The EEG has some differences too - no typical LGS pattern of 1.5-2.5 hz

spike and wave (Mae is usally 3 hz instead) with background activity usually

reverting to normal in between seizures (unless affected by medications).

Unlike LGS, MAE also a fairly high rate of remission of seizures 1-3 yrs after

seizure onset, so although still one of the nasty syndromes, it can have a

benign outcome. Has this been mentioned as a possible diagnosis? It is even

rarer than LGS, so unless a ped neuro has had a case before, it is often

mis-diagnosed. This is important in that some meds that can help with LGS

actually worsen MAE seizures - these are phenytoin, phenobarb viagbatrin and

tegretol.

The keto diet is now listed as the first line MAE treatment, then secondly

ACTH (steroids) then 3rdly the traditional AEDs.

Good luck with the diet, and as I said above, withdrawal seizures (and/or meds

fullstop) can affect the level of control, so patience and perserverance is a

neccessity, as I'm sure many others on here would agree with

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

From: jcb_ag97

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

[Guest guest]

Thank you so much for the helpful information. It helps to hear

from others who are experiencing similar situations. I also

appreciate the heads up on the MAE. I will definitely ask our Dr.

on Monday at our followup appointment.

> Woops - hit send last time without writing anything

>

> Hi Jana,

> Similar story here with my son - completely normal

development up to age 3, then the seizures hit and life changed

literally overnight.

> If you have recently stopped the depakote, and are also weaning

clorazepate (tranxene?) you will probably still be seeing fallout

from that - so until any withdrawal seizures have settled, you may

be waiitng for a while to see just how effective the diet will be

seizure wise.

> Clorazepate is a benzodiazepine med, so you are quite right

about a possible detox process happening, they are all very

addictive meds and very difficult to wean. The longer they have been

on them, the harder this process is, but it sounds like it has only

been fairly short term so far, hopefully this will make the wean a

bit easier than it otherwise would be.

> You are fortunate to have Drs who rcommended the diet so early

on in the course of your son's epilepsy, we waited a long 18 mths

with many toxic med cocktails before starting keto - our biggest

regret is not starting sooner into the seizure nightmare.

> Is he still on the zonegran? If so, watch his blood gases - this

is one of the meds that can cause metabolic acidosis when used in

conjunction with keto - both are acid inducing treatments, as are

topomax, diamox, and to a lesser extent, depakote.

> Re his LGS diagnosis - was given this one as well when

his seizures first started, but it was changed shortly afterwards to

Doose Syndrome (Myoclonic Astatic Epilepsy), which is a similar

childhood syndrome (as in a mixed seizure disorder, onset most

commonly age 2-4 yrs) but with some subtle differences. These are -

always normal development prior to seizures starting, TCs often the

presenting seizure type which then get taken over or joined by

myoclonics, absences and drops. Lack of tonic seizures (unless as a

paradoxical seizure response to benzodiazepine meds as happened with

, but that didn't happen till he had been on them for quite a

while) at onset is one of the differentiating factors, and there are

usually no focal seizures at that point either. The EEG has some

differences too - no typical LGS pattern of 1.5-2.5 hz spike and

wave (Mae is usally 3 hz instead) with background activity usually

reverting to normal in between seizures (unless affected by

medications).

> Unlike LGS, MAE also a fairly high rate of remission of seizures

1-3 yrs after seizure onset, so although still one of the nasty

syndromes, it can have a benign outcome. Has this been mentioned as

a possible diagnosis? It is even rarer than LGS, so unless a ped

neuro has had a case before, it is often mis-diagnosed. This is

important in that some meds that can help with LGS actually worsen

MAE seizures - these are phenytoin, phenobarb viagbatrin and

tegretol.

> The keto diet is now listed as the first line MAE treatment,

then secondly ACTH (steroids) then 3rdly the traditional AEDs.

> Good luck with the diet, and as I said above, withdrawal

seizures (and/or meds fullstop) can affect the level of control, so

patience and perserverance is a neccessity, as I'm sure many others

on here would agree with

>

>

>

>

>

>

>

> ----- Original Message -----

> From: jcb_ag97

>

>

> 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

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome, Jana. I'm glad you found the group. Lots of experience

here with the keto diet. I'm amazed at how quickly your son was

started on the diet--it's wonderful. It is also wonderful that you

stopped the Depakote and are weaning the benzo so soon. Most AEDs

interfere with the diet, so good you are on your way off of them.

Sounds like you are getting really good care and things are going

well so far!!

I am Cammie, mom to , age 8. Her first seizures was at age 6.

We did the drug merry-go-round for almost a year before starting the

diet. To make a long story short, she had her last seizure the day

before she started the diet. We had been decreasing her carbs in

preparation for the " fast " . We later found out that she was one who

made ketones easily. We, too, stopped depakote during the second day

in the hospital and did a quick wean of Felbatol. She was seizure

free and Med free 3 weeks after initiating. She was quickly back to

her " old self " again. Now no one would ever beleive there was a

problem if they hadn't seen it or been a part of it in some way.

had many kinds of seizures, too. She most likely had Doose

Syndrome (Myoclonic Astatic Epilepsy). She fit the picture perfectly

except for her older age at onset. Interestingly enough, her ped.

neuro talked about LGS with us, too, but he said her EEG pattern

didn't fit LGS--as well as her age. The keto diet is very successful

for many kids with epilepsy " syndromes " . It seems the sooner you get

on it, the better.

Keep us posted on your progress. I think you're gonna do great!!

Cammie

>

> 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