Re: Help/Keppra--Barb

[Guest guest]

Barb, you asked about reactions to Keppra that other parents have seen. I will

say that the diet completely changed the way my daughter metabolized that

medication. It wasn't a big deal before the diet, and she was at 4000mg/day at

20kg. That's a humongous dose, 1000mg above the recommended ceiling for an

adult (at however many kgs adults average). She didn't show much in the way of

side effects other than a subtle dulling of cognition, but that came about so

insidiously that we hadn't really noticed it.

THEN came the diet while she was at those levels and KA-BOOM! It all blew up in

our faces. Since she has almost no volitional control over her movements, so

she cannot really express aggression as kids typically might. What we saw from

the Keppra was episodes of severe muscle rigidity. You may remember my frantic

pleas for advice on that. After we were able to get our neuro to agree to a

wean to eliminate Keppra as a possible cause for the rigid episodes, the

rigidity improved with every decrease and was eliminated completely by the time

she reached 500mg/day. We also saw wonderful cognitive brightening and a much,

much happier disposition (not that she was particularly crabby, but she is just

so much happier on less Keppra!).

I'm sorry to hear is having trouble that you suspect may be due to the

Keppra. While our neuro assured us that aggression was a common side effect in

pediatrics only at _high_ levels, we found this personally to no longer be true

when taken in conjunction with the diet. Other people's mileage may vary...

Rose-Marie,

mom to (age 6)

[Guest guest]

is 10 and weighs 63 pounds. I think Keppra doses may be

generally higher than Jake's max. Maybe you should ask his neuro. ?

Ann

> I'm amazed at the doses of Keppra you guys (in general) are on.

Maybe your

> kids are bigger? Jake's on 250mg, and his neuro said we could try

pushing

> him up to a max of 500/day. Sounds so much lower than most (which

I guess

> is actually fine w/ me). Jake is 7 and 47lbs.

> I empathize w/ your diet/drug battle . We are still on the

diet -

> almost 6 years now - because it's been better than all the meds,

none of

> which have worked. Tough choices we all have to make, and tough

decisions

> our kids have to live with. Hang in there.

> Barb Swoyer, Jake's mom

>

> Re: Help/Keppra--Barb

> >

> >

> > Barb, you asked about reactions to Keppra that other parents

have seen.

> I

> > will say that the diet completely changed the way my daughter

metabolized

> > that medication. It wasn't a big deal before the diet, and she

was at

> > 4000mg/day at 20kg. That's a humongous dose, 1000mg above the

recommended

> > ceiling for an adult (at however many kgs adults average). She

didn't

> show

> > much in the way of side effects other than a subtle dulling of

cognition,

> > but that came about so insidiously that we hadn't really noticed

it.

> >

> > THEN came the diet while she was at those levels and KA-BOOM!

It all

> blew

> > up in our faces. Since she has almost no volitional control over

her

> > movements, so she cannot really express aggression as kids

typically

> might.

> > What we saw from the Keppra was episodes of severe muscle

rigidity. You

> may

> > remember my frantic pleas for advice on that. After we were able

to get

> our

> > neuro to agree to a wean to eliminate Keppra as a possible cause

for the

> > rigid episodes, the rigidity improved with every decrease and was

> eliminated

> > completely by the time she reached 500mg/day. We also saw

wonderful

> > cognitive brightening and a much, much happier disposition (not

that she

> was

> > particularly crabby, but she is just so much happier on less

Keppra!).

> >

> > I'm sorry to hear is having trouble that you suspect may

be due to

> > the Keppra. While our neuro assured us that aggression was a

common side

> > effect in pediatrics only at _high_ levels, we found this

personally to no

> > longer be true when taken in conjunction with the diet. Other

people's

> > mileage may vary...

> >

> > Rose-Marie,

> > mom to (age 6)

> >

> >

> >