Hi everybody,
We are new to this list. We are in the very beginning stages of starting the
ketogenic diet. We are currently weaning my son off of depakote and introducing
trileptal (he is also on zonegran). We are attending a ketogenic diet parent
training/education class at CHOP in June.
I saw that you mentioned the "other keto list". Can you give me more
information about that. I was unaware of another listserve for the diet.
Thank you very much.
Deb--mom of Jake--28 months, uncontrolled seizures, reflux, etc.

mmc@... wrote:


> It's been two and half months since she started the Keto diet and in the
beginning we saw great seizure control (for about three weeks) However, shortly
after after they dropped the dose of her depakote she lost total sz control.
(??) it is now 3 plus weeks and her sz are out of control.... They have
increased her klonipine 4 times, the depakote twice and increase her caloric
intake with no luck. The have added diazapam rectal jelly because she goes into
status epilepticus. She is 3 1/2 years old before the diet she averaged 3 szs a
day and now she is at 14 a day.... I don't know what to do ?? We don't want to
take her off the diet, we think that it worked for a short while and it will
probably work again.

Here's my geuss - when you dropped some dep, you got withdrawl seizures. Those
you have to just ride out. Upping the dose again or adding other drugs is not
going to help. The drs will say no they are not withdrawl seizures, the child
needs the drug. But I have seen this too much on the keto boards over the years.
The only suggestion I can offer you now is to slooooooowly work on weaning the
drugs. I think I would start with the depakote because it often doesn't work
well on thet diet. But I wouldn't leave the klonopin around too long either, its
very addictive and if you're on it a long time it can be a real **** to wean.
Be prepared for withdrawl seizures, take a deep breah when they occur, remember
the motto (this too shall pass) and don't drop again until she stablizies. Wean
very small amounts. You might want to consider tandem weaning - a little dep and
then a little klonopin, a little dep, a little klonopin and so on.
Its not that uncommon for withdrawl seizures from dep to last 2 or 3 or even 4
weeks. Make sure you have diastat or something at home to use if you need to
break up the clusters or prevent status.
If she really does need the drugs, the seizures will continue and continue and
continue. But my gut tells me, since you went seizure free to start with, she
probably doesn't.
Best of luck. Are you on the other keto list?
Michelle, Jessica's mom, former keto kid for 6.5 yrs

>




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