Re: Rose/angela -- Jenn

[Guest guest]

Jenn-- Ugh...Dilantin was a nightmare for us! We had to go down so slowly... When you speak of "behavior," are you referring to moods, aggression, or similar, or a physical behavior like ones I've described with ? The neuro and the blood work agree that what we're seeing physically is a "behavior," although not necessarily volitional. Most likely a response to meds? He tested her for a particular autoimmune disease that expresses itself through rigidity (great--that made MY day!), but that came back negative. Something we do wonder with our med wean is that is also on Keppra, and a toxicity sign for Keppra is supposedly aggression. has no way to express aggression, because she has almost no motor control. So we wonder if the rigidity could even be "aggression" as she would be able to express it. After all, for her it is frenetic agitation magnified to the max. Isn't that sometimes what "aggression" is? Rose-Marie, 's mom Re: Rose/angela -- Joan Mike is somewhat the same during a medication wean (dilantin) Things gowell until he gets used to the reduced level of medication and then hisbad behaviour and hard time falling asleep starts to creep back in.

[Guest guest]

So far the dilantin wean has been a bit challenging but nothing we cant

handle. We drop the dose, things are so good for two weeks, then

two days he wakes up each morning with a grand mal seizure. Then

7-10 days good again, then seizure again in the Am that is when I drop

the dose again. So far so good. We are now on our second last

wean and the bad behaviour started a few weeks ago (we were late on reducing

the dose again so I am thinking maybe we waited too long?)

His "bad" behaviour includes screeching at the top of his lungs, not

listening (when i tell him to stay on his chair he will get off and run

around or just not come when I call), he throws things or steps on things

(such as video tapes and cases) he deliberately draws on his sisters pictures

when they are drawing to get a rise out of them. He was found standing

on my 13 month old's legs because he didnt want his brother to leave the

room. Good thing I was not home at the time!! I am beginning

to wonder if things are happening with his phenobarb levels as we are decreasing

the dilantin. Is there a chance that the phenobarb is increasing

as we wean dilantin? Or maybe there is a problem with the clonazapam

as we wean the dilantin?

Any suggestions would be greatly appreciated. I am having a harder

time dealing with this "new" (and hopefully short lived) behaviour than

I have had dealing with anything else (yes seizures included) since this

all started.

Jenn

Don Gallagher wrote:

Jenn-- Ugh...Dilantin was a nightmare

for us! We had to go down so slowly... When you speak of "behavior,"

are you referring to moods, aggression, or similar, or a physical behavior

like ones I've described with ? The neuro and the blood work

agree that what we're seeing physically is a "behavior," although not necessarily

volitional. Most likely a response to meds? He tested her for

a particular autoimmune disease that expresses itself through rigidity

(great--that made MY day!), but that came back negative. Something

we do wonder with our med wean is that is also on Keppra, and a

toxicity sign for Keppra is supposedly aggression. has no

way to express aggression, because she has almost no motor control.

So we wonder if the rigidity could even be "aggression" as she would be

able to express it. After all, for her it is fre! netic agitation

magnified to the max. Isn't that sometimes what "aggression" is? Rose-Marie,

's mom

Re: Rose/angela

-- Joan

Mike is somewhat the same during a medication wean (dilantin)

Things go

well until he gets used to the reduced level of medication and then

his

bad behaviour and hard time falling asleep starts to creep back in.

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It is important to get medical advice from a professional keto team!

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[Guest guest]

Rose-Marie, I'm new to the list and the diet, but I can tell you that Keppra turned my sweet son into an unmanageable whirling dervish. Non-stop frenetic agitation for days on end. I was never so exhausted in my life! Don't know if it can also express itself in rigidity, but I wouldn't be surprised. Jane, Leo's mom

Re: Rose/angela -- Jenn

Jenn--

Ugh...Dilantin was a nightmare for us! We had to go down so slowly...

When you speak of " behavior, " are you referring to moods, aggression, or similar, or a physical behavior like ones I've described with ? The neuro and the blood work agree that what we're seeing physically is a " behavior, " although not necessarily volitional. Most likely a response to meds? He tested her for a particular autoimmune disease that expresses itself through rigidity (great--that made MY day!), but that came back negative.

Something we do wonder with our med wean is that is also on Keppra, and a toxicity sign for Keppra is supposedly aggression. has no way to express aggression, because she has almost no motor control. So we wonder if the rigidity could even be " aggression " as she would be able to express it. After all, for her it is frenetic agi tation magnified to the max! . Isn't that sometimes what " aggression " is?

Rose-Marie, 's mom

Re: Rose/angela -- Joan

Mike is somewhat the same during a medication wean (dilantin) Things gowell until he gets used to the reduced level of medication and then hisbad behaviour and hard time falling asleep starts to creep back in. " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe