Re: Getting frustrated...Liz

[Guest guest]

OMG, I just read the separate handout thingie that comes from the

pharmacy, and it also cleary states " May cause Seizures. Be sure to

inform your doctor of a history of epilepsy. " Good grief!!!!

How can the keto team prescribe it if it may increase seizures??? I

should have read the handout before, now I feel like a bad mother. I

don't know if I can just stop altogether, since the nurse told me his

carnitore level was low. Is there some other way to supplement?

Sigh, it never ends, does it?

Meredith

> > We started the diet in March, and were seeing great results (down

> to

> > less than 10 seizures/day from 100) until a week or so ago.

Nate's

> > ketones are still in the moderate range, but we don't see real

> > control unless the ketones are large. His seizures started

> > increasing, and he had a startling number this morning compared

to

> > what he was having. What's going wrong?? We started carnitore

last

> > week and now I'm wondering if the nurse didn't communicate it to

> the

> > dietician, since we weren't told to add oil to offset the carb.

> But,

> > maybe it's carb-free? Who knows.

> >

> > Has anyone else had experience with carnitore and has it been a

> > trigger for anyone? I'm at a loss since nothing else has really

> > changed. We were supposed to start weaning klonipin this week and

> now

> > I'm reluctant.

> >

> > Anyone else start to see great seizure control only to lose it??

> >

> > Meredith

> > Mom to Nate

[Guest guest]

OMG, I just read the separate handout thingie that comes from the

pharmacy, and it also cleary states " May cause Seizures. Be sure to

inform your doctor of a history of epilepsy. " Good grief!!!!

How can the keto team prescribe it if it may increase seizures??? I

should have read the handout before, now I feel like a bad mother. I

don't know if I can just stop altogether, since the nurse told me his

carnitore level was low. Is there some other way to supplement?

Sigh, it never ends, does it?

Meredith

> > We started the diet in March, and were seeing great results (down

> to

> > less than 10 seizures/day from 100) until a week or so ago.

Nate's

> > ketones are still in the moderate range, but we don't see real

> > control unless the ketones are large. His seizures started

> > increasing, and he had a startling number this morning compared

to

> > what he was having. What's going wrong?? We started carnitore

last

> > week and now I'm wondering if the nurse didn't communicate it to

> the

> > dietician, since we weren't told to add oil to offset the carb.

> But,

> > maybe it's carb-free? Who knows.

> >

> > Has anyone else had experience with carnitore and has it been a

> > trigger for anyone? I'm at a loss since nothing else has really

> > changed. We were supposed to start weaning klonipin this week and

> now

> > I'm reluctant.

> >

> > Anyone else start to see great seizure control only to lose it??

> >

> > Meredith

> > Mom to Nate

[Guest guest]

Avacado is naturally high in carnitine (which is what the Carnitor rx

is).....so you might be able to calculate that into his meals. When we added

it to Katera's Keto regimen, she got HORRID diahrrea.... but no increase in

seizures. They had not even tested her levels before ordering it for

her...... they just said " Almost ALL Keto kids are deficient in carnitine " .

But, YIKES....... you'd think they'd be more cautious with anything that

could potentially provoke seizures in our kids.

Patti

Re: Getting frustrated...Liz

> OMG, I just read the separate handout thingie that comes from the

> pharmacy, and it also cleary states " May cause Seizures. Be sure to

> inform your doctor of a history of epilepsy. " Good grief!!!!

>

> How can the keto team prescribe it if it may increase seizures??? I

> should have read the handout before, now I feel like a bad mother. I

> don't know if I can just stop altogether, since the nurse told me his

> carnitore level was low. Is there some other way to supplement?

>

> Sigh, it never ends, does it?

>

> Meredith

>

[Guest guest]

Meredith,

Your not a bad mom. I don't think any of us on this list could be

classed as a bad mom. When we first went on carnitine the pharmacist

just gave us a sleeve of the pills because we were waiting for

approval from pharmacare so our extended insurance would pay for it.

Well he didn't give me the write up that comes with it til about a

week later when he officially filled the prescription. I was really

upset when I read the possible side effects. Our pharmacist

obviously new Gillian's siezure problems and never told us this was a

possible side effect. I also felt stupid I hadn't asked for the

write up with the sleeve he initially gave us. Lucky for us Gilly

doesn't seem to have a problem with it, but I do think the pharmacist

should have informed us of the possible side effects. I don't really

see any difference in her when she's on it. Anyways, its all a

learning experience isn't it....always get the info on new meds and

read it. I've learned through experience and mistakes as everyone

else has. Don't beat yourself up over it, just bank what you've

learned for future reference. Hope things settle down for you again

quickly. Take Care.

Liz

> > > We started the diet in March, and were seeing great results

(down

> > to

> > > less than 10 seizures/day from 100) until a week or so ago.

> Nate's

> > > ketones are still in the moderate range, but we don't see real

> > > control unless the ketones are large. His seizures started

> > > increasing, and he had a startling number this morning compared

> to

> > > what he was having. What's going wrong?? We started carnitore

> last

> > > week and now I'm wondering if the nurse didn't communicate it

to

> > the

> > > dietician, since we weren't told to add oil to offset the carb.

> > But,

> > > maybe it's carb-free? Who knows.

> > >

> > > Has anyone else had experience with carnitore and has it been a

> > > trigger for anyone? I'm at a loss since nothing else has really

> > > changed. We were supposed to start weaning klonipin this week

and

> > now

> > > I'm reluctant.

> > >

> > > Anyone else start to see great seizure control only to lose it??

> > >

> > > Meredith

> > > Mom to Nate