Re: Please Help!! Strange Occurence

February 9, 2004

Hi Cammie

My daughter also developed these " ataxic " seizures while on Topamax

Thinking her levels were toxic--BUT within the norm

Thinking seizures were worse--so upped the dose--add a med, etc....

It was a vicious circle

I still believe it was all to do with the Topamax

And after, being admitted to the hospital, with increase in seizures, the

Video-EEG confirmed " SLOWING "

and docs were amazed the state she was in

All this got better when Topamax was weaned and removed

Sandi

February 9, 2004

I think there could be a combination of 2 things maybe happening.....like

Cammie said, when they happen at a time when meds are peaking, it has to

raise a red flag, and the other thing I must have skipped over in your

original post, but realised when I read Cammie's reply - was that Hannah has

recently started on carnitor.

I came to the conclusion that 's dreadful loss of control in Nov

last yr had a direct link to introducing carnitine - BUT not because of the

carnitne itself - rather what it did to the diet effect in , and in

turn, how that 'stronger' effect then affected his medication - in his case,

oral diazepam.

The state of ketosis can increase the med effects, to do with the protein

binding something or other (sorry - the exact wording and mechanism escapes

me right now, been a looong day here...). This is why some children can go

toxic on a med that pre-diet they had been able to handle. So, as far as I

am concerned, the deeper the state of ketosis, the more effect on the

medications it will have. Carnitine is known to raise ketones, and we did

see this with shortly before it all hit the fan. But - the clincher

with us, was that he suddenly starting falling asleep after his med doses,

(hadn't increased them at all) he hadn't done that for ages, and we noticed

the seizures that were escalating at night time were more common as his

doses peaked, etc etc.

If you are seeing this with Hannah in particular as her meds peak, then

chances are either the medication has become more 'toxic' to her than it was

previously without actually provoking seizures, (poss due to the carnitor

strengthening ketones and the ketosis effect in her) or it could now be

bringing on toxicity-induced seizures because she cannot tolerate the dose -

or, a combination of both.

With , we had suspected for a long time that he had developed an

intolerance to his diazepam,. and we believe that by adding the carnitine,

we 'tipped him over the edge'. He became v toxic, seizures resulted, and the

rest as they say, is history.

I think you may need to look into the ketone/med levels further, may not

be the same situation with Hannah, and the med intolerance thing was a sep

issue again with , but I would look at perhaps getting blood ketones

checked to see what sort of range she is in, and if they have gone v high,

or higher than they were before adding in the carnitor, maybe get a med

level done as well.

As Cammie said though, the increased effects of these AEDs from being in

ketosis are not often reflected in blood levels - but somewhere in Freeman's

book (mine is out on loan at the mo so can't check where) I think it does

say that you can sometimes see an actual rise in blood med levels as a

result.

Good luck,

----- Original Message -----

> I think your idea about the medicine peak has merit, especially since

> you notice these " incidents " close to the same time each day. How

> long does each episode last? Does it seem to be one episode or

> several?

> The diet can make some AEDs toxic even when taking the same amount as

> pre-diet. The problem is, for whatever reason, the levels don't come

> back as toxic... they are usually within normal limits. However, the

> behavior you see, as well as sometimes an increase in seizures, is

> more than likely an indication of a toxic reaction in vivo that isn't

> reflected by the actual laboratory values.

> I don't see how carnitor or folinic acid supplements could cause this

> unless you were taking them at very high doses, which then, might

> cause toxicity. However, if she isn't processing one or both of

> these things (i.e. she doesn't have enough eznymes or " co-factors " to

> break them down) then they could build up and cause a toxic

> reaction. Maybe it would be worth it to get levels on them. Be sure

> when they check carnitine, they do both free and total.

>

> Hope that helps some.

>

> Cammie

>

> > For about 2 weeks now my daughter has been have these strange

> episodes around

> > the same time everyday; She loses her balance and has no

> coordination; she

> > can't walk and even falls when crawling; Hannah is 2 years 3 months

> and has been

> > walking since she was 22 months; She is on the ketogenic diet, and

> we are in

> > the process of weaning her off Dilantin, now that her Tegretol is

> therapeutic;

> > She also takes carnitor due to a recently determined carnitine

> deficiency and

> > she takes folinic acid as a result of a spinal tap and

> neurotransmitter

> > study; In addition to losing her balance, she is more lethargic and

> tired than

> > usual'; the weird thing to us is - this episode happens at the same

> time each

> > time; the neuro thinks it is seizure related but I have not seen

> anything that

> > looks like a seizure (she has complex-partial seizures); My husband

> and I are

> > wondering if the dizzy spells aren't medicine related because the

> episodes occur

> > at a peak in her medicine?? Does the keto diet make some meds

> therapeutic at

> > a lower level and toxic at a lower level?>?? We are so worried

> about her and

> > really praying that we are not looking at a new seizure type; her

> EEG remains

> > unchanged; Could it be the carnitor or folinic acid?? A drug

> interaction??

> > Any ideas would help us tremendously!!!!!!!!!!!!!!!!!!!

> >

> > Thanks, Hannah's mommy

February 9, 2004