OK OK ..I know...excessive blogger here...
I juuust need that reasureance that I am making the right choice here.
called Neuro and pushed for decrease in her Zonegran....We are increasing both her AM and PM dose of Depakote to 3ml tomorrow...we were going to wait till friday but her seizures today have been miserable...gah!! I await the call to give me an OK....she is on 200mg of Zonegran and .25mg of Clonopin....AND now 3ml of Depakote 2 times daily...
Her appetite stinks...she is skinny and grumpy...and sleepy...no energy!! I feel so strongly about getting her off meds!! In the past Zonegran DID cut her seizures in half...but not away..(Ive already posted all that info...) I need her to be hungry! I just KNOW that when she can get food in her tum she will feel better as well!!
Feeding Team Apointment tomorrow!!! Eeeek!! Ill keep you posted!!
Me.
2 comments:
Oh goodness I dont know. She is so vulnerable right now. I'm all about less meds. I would defienetly try lowering the Zonegran. Give it a few days write down any changes. If you see a huge increase in her seizures with in days of the decrease you know it was working but give it a week to two weeks to let it settle and let her body get use to it. If things stay bad add it back and know for sure that it was working. If she only gains a few extra seizures a day no biggy its one less med and there are plenty others out there to try. They should just increase that Depakote at her max dose to get her to that seizure free point. She really needs that stability! I hav emy fingers crossed for her Feeding appt I hope it all goes well and that they get her on a better filling so she can be happy and well rested. No doubt alot of these problems are lying with her belly. Sending my best!
((((hugs))))
Zonegran is known to decrease the appetite and cause weight loss. It is closely related to Topamax which is used as a weight loss aid.
Depokote gave my children a huge appetite and made Asha's hair go very curly [known as the Epilum perm here in Australia] but it did nothing for their seizures. Nor did Topamax for that matter.
Leita xx
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