1. < Epilepsy & Seizures

Mother of a teenager who just diagnosed with Seizure Disorder

Posted by lyhay1973 @lyhay1973, Jan 15, 2022

Hello Everyone,
My name is Lisa and my 18yr old daughter has just been diagnosed with seizure disorder. She had her 1st seizure on 9/15/21 while at away at college. Yesterday 1/14/22 she had her 2nd one. This time my mom was with her in a store while on her way back to college. She was put on 500mg of Keppra (I think that’s how it’s spelled) they have now upped her dose to 750mg of Keppra. My brother has the same issue they are the only 2 people in my family that has seizures. My daughter just seems so defeated now, her driving privileges has been taken away until July 14th due to the 2nd seizure. She has anxiety and put more added stress on herself then needs be. She has been taking CBD oil for the anxiety and stress and help with recovery. She use to be a USAG competitive gymnast. The CBD helped a lot with muscle aches and pains due to the beating the gymnast put their body through. If anyone has any advice on how to help guide my daughter to cope with her new way of life I would be greatly appreciative. Everyone in my family wants to put her in bubble, I don’t agree with that she has to live and try to be a happy normal teenager. Thank you everyone

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alexm1994 | @alexm1994 | Jan 18, 2022

Find a neurologist that works for your daughter, try to find someone who is more focused on epilepsy e.g. an epileptologist - as they have more of an understanding.

Additionally, it can be useful to log seizures, medications taken/missed, side effects, triggers and everything else in an epilepsy app like Epsy (https://www.epsyhealth.com/). It's free in the US and allows you to sync data with your healthcare provider for future appointments.

Another thing is to seek out support from the community. There are many support groups from the Epilepsy Foundation (both national and more state specific), but you can also find a lot of community from social media such as on Instagram and Facebook. It's helpful to not feel alone and be able to talk to people who understand what your daughter is going through.

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Chris Gautier OR Santosha | @santosha | Jan 18, 2022
In reply to @lyhay1973 "Hello Sabtosha, I can not thank you enough with all the info you just shared with..." + (show)
@lyhay1973

Hello Sabtosha,

I can not thank you enough with all the info you just shared with me. I almost want to cry…..you have given us some avenues to explore that we never knew about. Her and I will be talking about some of the activities you do to help with your stress and anxiety for sure. Thank you sooo much. I will definitely be in touch and keep you posted on how it’s going.

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Hi @lyhay1973
Thank you for your kind message. It is a great pleasure to help! Looking forward to news from your daughter soon! Kind regards, Santosha

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Chris Gautier OR Santosha | @santosha | Jan 18, 2022
In reply to @jakedduck1 "@santosha You definitely belong and we couldn't get by without you. you mentioned that CND helped...." + (show)
@jakedduck1

@santosha
You definitely belong and we couldn't get by without you.
you mentioned that CND helped.
I was wondering if you ever considered taking Epidiolex?
I was reading a research article that was saying using the entire plant instead of just a few extracts was more beneficial for seizure control. i’m curious to find out what the next marijuana pharmaceutical will be.
Take care of yourself,
Jake

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Hi Jake,
Thank you for such kind words. The epilepsy group here at Mayo Clinic Connect has already helped me so much, it is a great pleasure to retribute and help others 🙂 :-). This gives me much happiness!
Answering your question, nowadays I take pure CBD (Purodiol) from Farma USA. Epidiolex (also pure CBD) is also available over here, but it is much more expensive than Purodiol. I understand, this is the reason why my doctor has prescribed Purodiol instead of Epidiolex,
I got very interested in this research article, could you share it with us, please?
Have a nice and beautiful day!
Santosha

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september2018 | @september2018 | Feb 20, 2022

Oh my goodness! I just got on this and found your post. My 20 year old daughter was just diagnosed as well. She has had 5 seizures, 1 a month starting September 16th, 2021. Almost the same exact day as your daughter...her last one was February 14th. We just returned from Mayo in Rochester to get a second opinion and course of treatment. My daughter was started on Lamotrigine on the 14th and today, just added Keppra. She is extremely dizzy today because of it. How is your daughter doing since you posted this?

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happyccl8 | @happyccl8 | May 20 9:27am

At age 14 my daughter was diagnosed with JME-Juvenile Myoclonic Epilepsy. She experienced horrible depression and Keppra made her psychotic, we tried Lamictal and she got a horrible rash Stevens-Johnson syndrome, then topamax made her lose her hearing and she suddenly couldn’t read well and understand what she was reading, then finally I told neuro to put her on zonisamide which was working for her brother at the time and it was a little better. We had to add ethoximide and I had to adjust those two meds until she was where she needed to be. Last weekend , she graduated from UC Berkeley with a double major in psych and social work and at age 22 she finally could get her drivers license. It took her about 3-4 years to accept. The final time she accepted it, she saw a video of herself seizing and how it started for why we made a big deal sometimes.

I let her live her life but she needed to know she needs be careful with alcohol, making sure not dehydrated or lack of sleep etc That’s the best you can do. She’s an adult now and I need to trust her.

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1 reply
Chris Gautier OR Santosha | @santosha | May 21 5:39am
In reply to @happyccl8 "At age 14 my daughter was diagnosed with JME-Juvenile Myoclonic Epilepsy. She experienced horrible depression and..." + (show)
@happyccl8

At age 14 my daughter was diagnosed with JME-Juvenile Myoclonic Epilepsy. She experienced horrible depression and Keppra made her psychotic, we tried Lamictal and she got a horrible rash Stevens-Johnson syndrome, then topamax made her lose her hearing and she suddenly couldn’t read well and understand what she was reading, then finally I told neuro to put her on zonisamide which was working for her brother at the time and it was a little better. We had to add ethoximide and I had to adjust those two meds until she was where she needed to be. Last weekend , she graduated from UC Berkeley with a double major in psych and social work and at age 22 she finally could get her drivers license. It took her about 3-4 years to accept. The final time she accepted it, she saw a video of herself seizing and how it started for why we made a big deal sometimes.

I let her live her life but she needed to know she needs be careful with alcohol, making sure not dehydrated or lack of sleep etc That’s the best you can do. She’s an adult now and I need to trust her.

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Hi @happyccl8
What a warrior your daughter is!!!! Congratulations to her!!!
Chris (@santosha)

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1 reply
happyccl8 | @happyccl8 | May 22 10:38am
In reply to @santosha "Hi @happyccl8 What a warrior your daughter is!!!! Congratulations to her!!! Chris (@Santosha)" + (show)
@santosha

Hi @happyccl8
What a warrior your daughter is!!!! Congratulations to her!!!
Chris (@santosha)

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Yes when she was 14 years she was the Teen Ambassador for Epilepsy Foundation Northern California and flew to Washington DC to advocate for epilepsy rights.

Get your daughter involved with organizations to empower her and help others. Teach her to make lemonaide out of lemons!

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Chris Gautier OR Santosha | @santosha | May 24 5:20pm

How great that @happyccl8 !!! Congratulations to your daughter again
Some time ago, I found out that there is an education called Epilepsy Patient Expert at Sorbonné University in France. It is an education of 3 years. Perhaps you have something similar in the States that might interest your daughter?
Here is the link to this education of Epilepsy Patient Expert with more details: https://www.sorbonne-universite.fr/en/campus-life-1/culture-and-outreach/community-outreach/patients-university
Have a nice weekend!
Chris (@santosha)

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