Medication toxicity?

[Guest guest]

Hello--

I could use some help. started the diet 12-10-01, did so *awesome*

at the hospital and great our first week home. This week things are

deteriorating and I am trying to keep my chin up.

The first two weeks of the diet saw some fantastic changes. The biggest was

seizure control for the very first time since she began having

seizures(!!!), and there were such positive effects on motor, vocal, and

bladder control as well. What a gift! The only concern was that she was

still more lethargic than we'd like to see, and that added a complication of

not being able to tell if might have been having extremely subtle

quiet seizure activity.

This third week is not going great. The quiet episodes are most definitely

seizure-like, although usually lighter than pre-diet. However, the

motor-involved fellows are also sneaking back in. :0( 's weight is

down a total of 5.5 lbs since we started, though yesterday she started

taking 50 Kcal more than we'd been giving her. She looks absolutely ill,

with no color to her except the deep purple rings around her eyes. She's

soooo scrawny and acts very weak. The motor control we had seen is rapidly

leaving again (which might be due to inadequate calories?). But what has me

most concerned is her personality change. Her spunk is GONE and she isn't

communicating or able to pay attention. We've been at this point before

when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on

amounts that were toxic. So we are extremely suspicious that she may be

toxic on her current levels of Keppra (already sky-high blood levels...)

and/or Lamictal.

How soon after initiating the diet might a child start showing signs of

toxicity? What signs do you look for? The neuro told us Keppra toxicity

causes aggression and Lamictal shows up as nausea or vomiting. But are

there other signs we need to be watchful for that you all have seen? She

showed nystagmus (eyes not working in tandem) on Dilantin, which showed up

again yesterday. Also, her eyes have been bloodshot every since starting

the diet. 's hand use is basically non-existent due to her syndrome,

but immediately upon starting the diet she was able to activate her switches

intentionally. Now she is back to uncontrolled flailing where she hits

herself in the face...the bridge of her nose took a really good shot this

morning. This kind of involuntary flailing was also something we saw only

on Dilantin.

It breaks my heart to see this way. The neurology nurse's suggestion

was to increase her medications, but my husband and I feel this is the wrong

direction and have chosen not to increase. We'll have labs drawn later this

week, but even at that it takes 10 days to get the Keppra levels back (just

another reason we really want her OFF of it!!!).

Our dietician is supportive of the possiblity of medication toxicity, yet

her position does not permit her to make recommendations regarding drugs.

Our neuro is in Brazil for the next week, and the nurse is, well,

recommending that we increase Lamictal.

So, I ask you all for your insights. Are we missing something obvious

related to the diet? Are there subtle toxicity signs you have seen with

either Lamictal or Keppra that you might suggest we be watchful for (because

maybe we've seen them and just not made the connection)?

Your help is most greatly appreciated,

Rose-Marie,

wife to Don,

mom to , (5 3/4 yrs)

and Becky (3 3/4 yrs)

North Bend, WA, USA