Advice for a Mother of a young adult with epilepsy

[MommaC]

Hi Everyone - I'm MommaC and have a beautiful 21 year old daughter who has had epilepsy since she was 8 months old - complex partial seizures with secondary generalization. She has never been totally controlled with medication but has had several stretches of over 3 years of being seizure free but typically has 1-2 seizures/year. She has been on Keppra and Topamax for awhile but after being hospitalized for a video EEG last month asked her neuro to not put her back on the Topamax because of slowed cognition. She has had 4 seizures in the past month and now the neuro has introduced Vimpat with the Keppra. My daughter has recently moved into her first apartment and will be living with 3 other girls - one with some history of seizures. What I need from this group is encouragement that having my daughter live independently is the right thing to do. She has had 2 seizures in her first week in the apartment. It is hard to let go as the seizures recently seem connected to stress or anxiety. Any advice from other parents or from college students with epilepsy that have generalized seizures at school? How do you cope and let go? It has been a hard week for me - my daughter seems ok. A bit embarrassed and uneasy about explaining her condition to new friends but determined to see this through. I am too but in the midst of that determination, I'm a nervous wreck!

 

[Sparklebutt]

I can relate as a parent and being worried for your children, however I am a daughter of a very protective father. I am the one who struggles with epilepsy and my dad has never really been able to cope completely with my seizures. I had my first seizure when I was 18 months old and my father was holding me at the time. Since then he has always been protective of me and never quite got over the trauma of that night. When I first moved out it was really hard on him. One way that has seemed to help him with me being away from home has been to call or to text him when I take my pills. It may seems kind of silly but he knows I am taking meds plus I stay in contact with him. I am now 27 and have kids of my own and a husband who is wonderful and can help me with my seizures but I still call or text my dad everyday when I take my pills.
I think it is a good thing to let your daughter be independent and maybe you need to find some small way to comfort you. Being independent with seizures is not always easy but having a good support system and family to fall back on can help.

 

[MommaC]

Thanks, Sparkle! What a nice thing for you to do for your father. Your words are encouraging and I'm pleased to hear you are married and have children. I know in my heart that she has to have this independence and that there is nothing I can do -either when she is living with me or is away from me- that will stop her seizures, but it is hard to let go.

 

[Nakamova]

Hi MommaC --

It must be hard to let go. I'm sure your daughter knows how much you love and care for her, and that provides a strong foundation for her to live on her own. If you check in regularly that will help both of you with this transition. Moving is stressful and new situations are stressful, so it's likely that as thing settle down, so will your daughter's health.

As for you, it will just take time to get used to the idea of her being on her own. You can't just turn off the part of your brain that's wired to worry. At least not right away.

 

[MommaC]

Thanks, Nakamova! It is hard to switch into more of a support role and trust others to be the "first responders". One day at a time....

 

[Kayleigh]

Two months ago I had my first tonic/clonic siezure (I had a history of partial seizures but had been fit free for two years) I was completely fine with it until a couple of weeks ago when it really hit me. I got upset and my mum said how she had got upset aswell and I hadnt realised how much it had effected her. I am 18 and have just got my results meaning I got into uni and will therefore be moving out. I know my mum will worry but I am a bit worried aswell, worried but really excited. I think what i'm trying to say is that its hard on both mum and daughter and the easiest way to not totally panic is just to be open and let your daughter know youre there for her and tell her what exactly you're worried about, she may be able to ease your concerns. One thing I learnt when I had my fit (I was at work) was that people you dont know will be really kind and understanding. I had my fit at the end of june and a week ago (I had Friday off) but I was later told that a bus driver came in and asked how I was and if I was ok as he was working the day I had my fit.

 

[MommaC]

Thanks, Kayleigh! I appreciate you sharing so openly. My daughter is back at her apartment tonight and a friend is going to come hang out with her. You are right about the niceness of people. For the most part, they really want to be supportive! Take care and good luck at University!

 

[RobinN]

My daughter's seizure threshold has been raised thankfully. She has not had a seizure in about 8 months. She spends more time away from home, but that is how it should be. She will be 20 this year. So I must step back as her mom and caregiver. I hope I have given her enough information so she can make the best possible choices for her health. It is difficult to have children go off on their own, but it is what we raised them to do.
I guess for me, having a son in the military has prepared me for a situation like this. I pray for their safety, and after that it is out of my hands.

 

[MommaC]

Good points, Robin. Thank you!

 

[survivor]

Hello there! let the child go and stay alone. See, life is really long and for how much time u can be with her. She has to get married and then also she will go! Is'nt it so? I had my first appointment quite far from my place, my parents sent me there. I know at that point of time they might have worried tooooo much but their decision and trust on me has helped me a lot and today i have a stable job. Keep calling, keep asking about health, keep reminding various things, but let her be there with her friends. Let her face the life! She will only get stronger! Tell her u will be at her side whenever she needs.

 

[NeuroNotes]

*waves to MommaC*

"one day at a time"

*hug*