Re: new seizure type for Hannah

[Guest guest]

Dear

My first reaction here is myoclonus / myoclonic. Don't be too

alarmed as Hannah's seizure patterns seem to change from time-to-time

and, as for many of our kids, come from a bit of mixed bag. You just

don't know, like the tonic clonics, this may be something on its way

out. I know from experience that myoclonic seizures can present just

as quickly as they can disappear - eg, at the peak > stabilisation of

a drug change or, most noticeably for us, upon commencement of the

KGD!!! There's an answer to all of this. Please know that we're

thinking of you, love le.

(Here's a definition of " myoclonus " & " myoclonic seizures " from

Epilepsy A to Z which I got from EFV...

Myoclonus

Brief and involuntary contraction of one or more muscles. Myoclonus

is not necessarily epileptic (eg, in sleep). Epileptic myoclonus

arises from paroxysmal discharges of the central nervous system.

Myoclonic seizures

Myoclonic seizures consist of brief and violent muscular

contractions, usually bilateral that do not affect consciousness.

Myoclonic contractions may be single or multiple, lasting for seconds

to hours. Contractions may be rhythmic or irregular. When the upper

limbs are involved, patients may drop or throw objects. When the

legs or trunk are involved, the patient may suddenly fall.

The usual EEG correlate of myoclonic seizures is generalised or

multifocal spikes, polyspikes, and slow waves. Scalp-recorded EEG

discharges may be visible in the case or cortical myoclonus, or

invisible in the case of subcortical myoclonus. Certain cortical

discharges with myoclonus are detectable only with use of signal

averaging techniques.

Myoclonic seizures are seen in idiopathic generalised epilepsies;

benign myoclonic epilepsy of childhood; juvenile myoclonic epilepsy;

the LGS; progressive myoclonic epilepsies; and a wide variety of

seizures from toxic and metabolic causes.)

> In the last couple of weeks we have noticed that Hannah is doing a

quick " jerk " and immediately recovering. Her entire body is involved,

limbs and head too, and it doesn't seem to bother her. I've seen it

happen about six times today, and they sometimes occur in clusters of

two or three over about a minute or less. Her carer who comes to our

home has also noticed them independently to us.

>

> Do these sound like seizures that any of you have seen in your

children?

>

> (Hannah's mum, Australia)

[Guest guest]

Since the end of April, Chase started having these

complex partials in the middle of the night, after a

big seizure. He would turn over on his back, smack

his lips, kick his blanket off with his feet, and then

roll back over. At first I didn't realize them as

seizures. Then I started timing them, and realized

they were seizures when he told me the dryer kept

waking him up (the dryer wasn't running). They would

occur every 2 - 4 minutes for 2 - 4 hours.

I seem to remember my dietician telling that seizures

could switch from nights to days and then from days

back to nights on the diet. I imagine you can also

see new, different seizures than what you're used to

seeing.

I don't understand it myself, other than hoping it can

be resolved with fine-tuning.

For Chase, I discovered that these started up a short

time after I started giving him the Carnitine. I am

reducing the amount I give him, hoping that will be

the " cure " .

mom to Chase, 8 1/2 yrs old,

ketokid since 3/00, medfree since 3/01

__________________________________________________

[Guest guest]

Sounds somewhat similar to what Jess has done in her last two bouts of

seizures. They are calling them myoclonics

Sorry

"GAVAN J. CANAVAN" wrote:

In the last couple of weeks we have noticed

that Hannah is doing a quick "jerk" and immediately recovering. Her entire

body is involved, limbs and head too, and it doesn't seem to bother her.

I've seen it happen about six times today, and they sometimes occur in

clusters of two or three over about a minute or less. Her carer who comes

to our home has also noticed them independently to us. Do these sound

like seizures that any of you have seen in your children? (Hannah's

mum, Australia)

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NOT just a last resort!"

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[Guest guest]

Sounds somewhat similar to what Jess has done in her last two bouts of

seizures. They are calling them myoclonics

Sorry

"GAVAN J. CANAVAN" wrote:

In the last couple of weeks we have noticed

that Hannah is doing a quick "jerk" and immediately recovering. Her entire

body is involved, limbs and head too, and it doesn't seem to bother her.

I've seen it happen about six times today, and they sometimes occur in

clusters of two or three over about a minute or less. Her carer who comes

to our home has also noticed them independently to us. Do these sound

like seizures that any of you have seen in your children? (Hannah's

mum, Australia)

"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]

Yes, they sound like myoclonic jerks, unfortunately.

Jake's used to look like quick head drops. He would have up to 30 a day on a worse day.

Some people describe them as "cattle prods" - like you got quickly zapped w/ something.

Tegretol is known to aggravate them in some kids.

Sorry....you might want to check this out or talk to your neuro at least.

Barb Swoyer, Jake's mom

new seizure type for Hannah

In the last couple of weeks we have noticed that Hannah is doing a quick "jerk" and immediately recovering. Her entire body is involved, limbs and head too, and it doesn't seem to bother her. I've seen it happen about six times today, and they sometimes occur in clusters of two or three over about a minute or less. Her carer who comes to our home has also noticed them independently to us.

Do these sound like seizures that any of you have seen in your children?

(Hannah's mum, Australia) "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]

Yes, they sound like myoclonic jerks, unfortunately.

Jake's used to look like quick head drops. He would have up to 30 a day on a worse day.

Some people describe them as "cattle prods" - like you got quickly zapped w/ something.

Tegretol is known to aggravate them in some kids.

Sorry....you might want to check this out or talk to your neuro at least.

Barb Swoyer, Jake's mom

new seizure type for Hannah

In the last couple of weeks we have noticed that Hannah is doing a quick "jerk" and immediately recovering. Her entire body is involved, limbs and head too, and it doesn't seem to bother her. I've seen it happen about six times today, and they sometimes occur in clusters of two or three over about a minute or less. Her carer who comes to our home has also noticed them independently to us.

Do these sound like seizures that any of you have seen in your children?

(Hannah's mum, Australia) "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]

Yes, they sound like myoclonic jerks, unfortunately.

Jake's used to look like quick head drops. He would have up to 30 a day on a worse day.

Some people describe them as "cattle prods" - like you got quickly zapped w/ something.

Tegretol is known to aggravate them in some kids.

Sorry....you might want to check this out or talk to your neuro at least.

Barb Swoyer, Jake's mom

new seizure type for Hannah

In the last couple of weeks we have noticed that Hannah is doing a quick "jerk" and immediately recovering. Her entire body is involved, limbs and head too, and it doesn't seem to bother her. I've seen it happen about six times today, and they sometimes occur in clusters of two or three over about a minute or less. Her carer who comes to our home has also noticed them independently to us.

Do these sound like seizures that any of you have seen in your children?

(Hannah's mum, Australia) "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 to those who responded to my questions about Hannah's jerking movements. I had myoclonic seizures in mind when I wrote about it, and you have confirmed by suspicions. We have neuro appt in 3 weeks, so I'll see what we gain from that.

(Hannah's mum, Australia)

new seizure type for Hannah

In the last couple of weeks we have noticed that Hannah is doing a quick "jerk" and immediately recovering. Her entire body is involved, limbs and head too, and it doesn't seem to bother her. I've seen it happen about six times today, and they sometimes occur in clusters of two or three over about a minute or less. Her carer who comes to our home has also noticed them independently to us.

Do these sound like seizures that any of you have seen in your children?

(Hannah's mum, Australia) "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