Medication management issues for my daughter - suggestions?

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?

Thank 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)

@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.

Hi, @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.

@lisalucier Thank you for the information.

I am so sorry to read about your pain and your child's suffering. I have seen three neurologists in the past two years for a seizure condition that was well managed until my mother passed in pain. A recent auto accident where I was struck has also put my drug managment and seizure condition into chaos at times. I could not imagine taking care of a child with the seemingly madness of "try this drug and tapering off that drug" and "see you in 3-4 months. "

Here's what I could suggest...can you see a PA or nurse of the physicians team (posted on the website)? Can you schedule a virtual call to establish in the record that the plan is not working and your child is suffering? If you can get the team to go to the dr I have had success managing my condition in a more timely manner. The physicians assistant can change the medication and managment (tapering off of one drug to another is complicated and painful to experience). I had "brain" zaps from a pain medication recently. The dr was 90 days out for appointments. I had a virtual visit with his PA (presribed new med levels and it's working) and I have the neurologist virtually in two weeks now. Virtual might not be the best level of service but getting in front of the team can get you a more timely appoinment.

If the phyiscian (neurologist) does not have a team (PA, case workers) to support the strained practice maybe it's time for a new dr or second opinion. I would recommend a team approach when screening for a childs seizure condition. All the best to you and your child.

Hi @closetmonster93
I have been on Keppra since 19 December 2024 and heart issues have been one of the side-effects I am feeling with this AED, though I never had heart issues. In 2023, I did a complete check-up, and as the doctor said to me: your heart exam results are exemplary.
According to product information, it can cause:
irregular heartbeat
fast heartbeat
Check the link that @lisalucier has sent you.
Because of this side-effect, my doctor ordered some heart exams. He said that Keppra would need to be suspended in case of arrhythmia.
I started with a 500 mg dose twice a day. Due to so many side-effects I am having, my doctor has been reducing it little by little. The heart side-effects are softening and I clearly can see it on my watch that measures my heart rate.
Has your doctor been doing this fine-tuning process with you? Though there is a recommended dosage for adults, everyone is one as my doctor told me. I am already on 200 mg 2 times a day, which is lower than the pediatric dose. But I have been a very sensitive person to drugs since my childhood.
Chris (@santosha)

Good tips @sarvers2000 🙂
My doctor has been doing this fine-tuning process of my new AED over the phone. We have weekly calls and my dosage has been reduced little by little. Many side-effects have already softened.
Chris (@santosha)

@santosha I just read your reply. So, this is exactly what I thought, however, my neurologist denies that Keppra can or does any of these things which is super frustrating to me because, I know it does. When I started Keppra, I started having very fast irregular heart beats. I have no previous family history or any history of heart issues, until I was put on this drug. Now the irregular heartbeat has gone to SVT, and I experience it at night when I am sleeping, and it wakes me up. My neurologist flat out said, its not the Keppra, and my Cardiologist says it is but it is not worrisome. I am completely floored and confused. I do not see my neurologist again until March, but, I am not going to stay on the Keppra, I hate the way it makes me feel, and nobody is monitoring or doing anything. Its so frustrating.

Hi @closetmonster93
I can well understand your frustration with your current doctor. I had some doctors with the same behavior as yours and changed.
As I have mentioned many times here in the group, I see a great difference between neurologists and epileptologists. Here I copy some information explaining the difference between a neurologist and epileptologist:
Neurologist: A neurologist is a medical doctor who specializes in diagnosing and treating disorders of the nervous system, which includes the brain, spinal cord, and nerves. They manage a wide range of neurological conditions, such as headaches, strokes, multiple sclerosis, and epilepsy.
Epileptologist: An epileptologist is a neurologist who has completed additional training specifically in epilepsy. This subspecialty training typically lasts one to two years and focuses on the diagnosis, treatment, and management of epilepsy and seizure disorders
Rarely, a neurologist will do this fine-tuning process of medication.
PLEASE DO NOT TAKE THE DECISION TO STOP KEPPRA JUST BY YOURSELF, IT CAN BE DANGEROUS. At many moments, when I started my treatment with AEDs with neurologists and psychiatrists, I wanted to throw all medications out of my window and stop with them immediately. I can understand you very well. PLEASE, DO LOOK FOR A DOCTOR WHO CAN PROVIDE YOU WITH GOOD ATTENTION AND CARE AND IS SPECIALIZED IN EPILEPSY.
My best vibrations to you!
Chris (@santosha)