Re: Primidone (Mysaline)-Kim

[Guest guest]

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

> > >

> >

> >

> >

> >

> > __________________________________

> > Do you Yahoo!?

> > Yahoo! Mail is new and improved - Check it out!

> > http://promotions.yahoo.com/new_mail

> >

> >

> >

> > Please contact mito-owner with any

> problems or questions.

> >

[Guest guest]

Hi Kim;

I feel for you and hope the girls get some relief

from stopping the primidone. Does the neuro have an

alternate plan to try another drug? No doubt Kirk's

probably been on it. I know how exhausting it can be

trying to diagnose the effectiveness of a new drug as

well as trying to dtermine the reason for behavioral

changes. We always seem to have several factors that

might be responsible for a reaction and I find it so

tiring trying to figure out what could be the culprit

for increased seizures or health changes.

I understand too, you apprehension over the MRI.

I think we all go through it. If it helps, Kirk's

second MRI showed improvement in signal conduction

which was a unexpected surprise for our mito doc.

She'd only ever had one other child whose MRI showed

improvement. She said if Kirk's initial MRI had

ressembled the second, they never even would have

suspected mito disease - that's how different it was.

We haven't had another MRI since then but I must

admit I'm curious to know what it looks like. Even

though an MRI isn't going to change our ability to

treat Kirk or help improve his prognosis, I'm thinking

of requesting another MRI even if it's just for the

sake of Science.

Take care and hang in there!

--- knovy4@... wrote:

> ,

>

> 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

>

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