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Medication management issues for my daughter - suggestions?
My 10-year-old has General epilepsy along with Jeavons Syndrome with eyelid myoclonia.
For the first few years, there were only myoclonic eye flutters and absent seizures. Over the last 2 years, clonic tonic seizures. In Sept they were every morning like clockwork, for over a month. Finally, her neurologist had us drive to Westchester children's hospital. They were not great unfortunately but did lower 2 meds and added a new one. The new med seems to have really kept the clonic tonic seizures at bay, with only 2 so far due to lack of sleep.
My question is, they have her on so many meds and due to the Westchester doctor being booked until February, her meds are just stationary. I know they are supposed to be upping the new one and reducing the old ones. But her old neurologist refuses to help! Does this make sense to anyone??
Keppra - was 3x a day at 7ml (125mg/ml) - reduced in September to 4ml x2 a day
Clobazam - was 2x a day at 7ml (2.5mg/ml)
Eprontia - 2ml (25mg per ml) x2 day
Clonadine - 0.2mg at bed for sleep
Eprontia seems to have worked above anything, but I read it was supposed to be increased weekly! Her eyes myoclonias are coming back and she has had 2 more seizures recently. I feel like they are neglecting her and I'm so lost. I have no family or friends to help, and I'm constantly crying as I am ready to fly to Mexico for help at this point! The good dr at Westchester is great, but won't change her meds until she's seen, even though he is the one that put her on it and admitted her to the children's hospital in September.
Any one heard of this large amount of meds without decreasing the keppra, clobazam or increasing the Eprontia???
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Hi @loonieyvonne - welcome to Mayo Clinic Connect. You sound like a mom who cares deeply about her daughter. I'm so sorry to hear you've been constantly crying, you have no family or friends to help, and you feel so lost.
I can imagine I'd feel stuck if I knew medications were supposed to be gradually tapered down and titrated up for my child, yet this was not happening and I could not get any traction on getting my child on this path.
I'm glad to hear the new med the neurologist at the children's hospital prescribed seems to have really kept the clonic tonic seizures at bay.
Though Mayo Clinic Connect members are not medical professionals, @jakedduck1 @ckc45 @nemo1 @lynda1992 @keppraeffect @pamelastewart5 and @santosha may have some thoughts about what you mentioned regarding the large amount of meds your daughter is now on without decreasing the levetiracetam (Keppra), clobazam or increasing the topiramate (Eprontia).
loonieyvonne, you talked about your daughter's myoclonias coming back and two more seizures recently. How has the last day or so gone for her?
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2 ReactionsThank you @lisalucier for bringing me into this conversation.
@loonieyvonne I can well understand your feelings of insecurity at this current moment. It is very disappointing to read that your daughter's old neurologist refuses to help in such a situation. Can't perhaps the Westchester doctor suggest a colleague who could support you and your child while she is booked? I agree that three months for a new appointment and medication adjustment is far too long in such a situation. As I have shared in another post today, the process of medication in epilepsy is many times a fine-tuning process that requires constant following and availability of your doctor. This does not only increase the chances of treatment success but also provides us with security and more endurance.
Wishing you and your daughter better days and endurance. Do not give up!! If the current doctors are not available to help, there are others out there with very good hearts and more availability and attention to his or her patients. I just remembered seeing a great online interview with a Mexican epileptologist some time ago. Unfortunately, I can not remember his name. I know myself that this is not always a short and easy road, but stay strong and keep walking.
My best vibrations to both of you!
Chris (@santosha)
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1 Reaction@lisalucier I have a question regarding Keppra. Is Keppra a medication that an adult post menopausal woman should be on? I believe it is causing SVT, and my doctor says thats not possible. I was put on the medication and these things started occurring. I have no heart issues, no family heart issues, and I have read that AEDs can cause this in people with Epilepsy. I am just not getting anywhere with my doctor on this and need any input or information one can provide.
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1 ReactionHi, @closetmonster93 - here is some information about the medication:
- Levetiracetam (Keppra), oral route https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010
It is for seizure control.
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2 Reactions@lisalucier Thank you for the information.
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