Re: Primidone (Mysaline)-kelly

[Guest guest]

,

What a week we have had on Primidone! The girls have been very irritable,

throwing huge fits and crying uncontrollably. I spoke with the neuro's office

yesterday and we decided to take the girls off the primidone for now and see

if these behavior issues go away. The seizures have also gotten worse. I was

brought to tears the other evening after dealing with a day of constant

screaming and crying followed by an insane amount of myoclonic jerks and eye

flutters. I was totally freaked out.

The girls are going through a very rough time right now. We are seeking a

second opinion with an epileptologist on September 1st. In addition, they are

having an MRI/MRS at Mayo on September 21st. Sometime in between there, we

are probably going to have an EEG done to see what exactly is going on. I

learned last week that their EEG from 1/04 was considerably worse than the

initial one done in 9/02. It's frustrating when we have gone through all of

these meds trying to control things only to watch things get worse. But, I

guess that's the nature of this beast we are facing. I am dreading the MRI

as I am deathly afraid it's going to come back abnormal. Their initial one

at 6 months came back normal.

I'm glad that Kirk has made some ground on his seizures. When you were

talking about osteopenia; while the girls were on phenobarb, their alkaline

phosphatase level came back way high (over 2000) and they discovered that the

phenobarb was affecting their bone turnover. We started them on Vitamin D and

the level did go down some. I bet that is what is happening with Kirk.

I will let you know what we find out with our upcoming tests. Thanks again

for all of the information.

Kim - Mom to and Lindsey (2)-- Partial Complex I Mason (4) Delaney (7)

both healthy

> Hi Kim;

> Kirk, of course was very groggy with the high

> phenobarb levels and he's developed breathing problems

> since May. He can't handle his secretions and has

> ended up with cronic pneumonia. I do notice though,

> that his ability to clear his throat has improved

> since we stopped the phenobarb. I assume his whole

> respiratory system was depressed and he became very

> lazy. We're still trying to recover but I think we're

> really looking at a new baseline for him.

>

> We tapered right off the phenobarb and he's now

> just on Primidone 250 mg TID and on alternate days,

> 250 mg a.m., 125 mg p.m, 250 mg. hs. Fortunately we

> have seen improvement in his seizures since starting

> the primidone. Although some of the primidone does

> convert to phenobarb in the body, it does contain

> properties of its own so we added it to the list of

> meds to try. We really were running out of options.

> I wish we could give him more but he's already getting

> a high dose. He seems to be metabolizing it very

> quickly so his levels aren't as high as they should be

> for that dose. It's all an experiment.

> Kirk's also having problems with osteopenia. He

> broke his femur last month and is now being followed

> by endocrine too. His nurse has done some research

> and has found a lot on Phenobarb depleting VIT. D.

> Although our neuro hasn't a lot of experience with

> this, he's looking into it. I'm sure the

> endocrinologist will shed some light on it.

> Right now Kirk's seizures are basically Tonic and

> generalized. He could have as many as 15/day or as

> little as 3. They are intractable though. In the

> past, he typically has had a cluster of myoclonic

> jerks for approx 10 minutes following a 1 minute

> tonic. Lately however, the tonic is usually 30 sec.

> and isn't follwed by any cluster activity. This is

> the best it's been in quite a while so I'm happy.-

> Just hope it keeps up.

>

> Take care. Keep me posted,

> , mom to Kirkland 3 yrs, Complex One plus Evan,

> 10 yrs, Carson 7 yrs (both fine and healthy)

> --- knovy4@... wrote:

>

> > :

> >

> > Thanks for your reply. The girls were on phenobarb

> > for about a year and a

> > half but, have been off it for almost a year now.

> > That's why my husband and I

> > are wondering why Primidone when Phenobarb did

> > nothing for them. I went ahead

> > and put them on it as I would hate to not try and

> > have it work. They are on

> > 25mg at bedtime right now and we will gradually

> > increase over the next few

> > weeks.

> >

> > Has Kirkland had any side-effects from the high

> > levels of phenobarb? The

> > twins also have partial complex I. What types of

> > seizures does Kirkland have?

> >

> > Thanks again for the info!

> > Kim

> > > Hi Kim;

> > > Yes, Kirkland is on Primidone. We chose it

> > because he

> > > appeared to be growing out of phenobarb but had

> > > initially responded to it. Our neurologist felt

> > that

> > > Kirk might respond to primidone being that it does

> > > contain properties that are converted to phenobarb

> > by

> > > the body.

> > > So far we have noticed a decrease in seizures but

> > > beware, Kirkland also has Partial Complex One and

> > his

> > > metabolism of this drug is a bit mystifying. He

> > > appears to metabolize the primidone itself

> > quickly,

> > > but while this is going on, the phenobarb is

> > > metabolized slowly. What we've found is as we up

> > the

> > > primidone, its levels increase at a normal rate

> > but

> > > the phenobarb seems to collect in the system and

> > his

> > > blood levels have been really high (over 300).

> > > I hope this is making sense. Kirk's reaction has

> > been

> > > something new for his doctors to deal with. Is

> > your

> > > daughter on phenobarb too? I'd be curious to know

> > > what your experience is like. Please feel free to

> > > write if you need clarification. It took me

> > awhile to

> >

> > > understand how it works.

> > >

> > > Take care,

> > > , mom to Kirkland 3.5 yrs, partial Complex

> > One

> > > Def., intractable seizures, dev'l delays, CVI, g-j

> > > tube, 24 hr O2, ......

> > > --- knovy4@... wrote:

> > >

> > > > Hello friends. Has anyone had any experience

> > with

> > > > the seizure med Primidone

> > > > aka Mysaline? This is the next seizure med our

> > > > neuro wants to try. I have

> > > > never heard of it myself.

> > > >

> > > > Thanks in advance for any info.

> > > > Kim - Mom to and Lindsey (2 1/2) Partial

> > > > Complex I

> > > >

> > >

> > >

> > >

> > >

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> > >