Wellness

[Ibby114]

Thanks. That last seizure was scary, though - she was holding a knife! Fortunately it went flying in the opposite direction.

She's nudging me to start driving! The laws in my state (NJ) are 1 year seizure free, that's way too little time imo. I told her 3 years- and that the 'MOTHER LAW' outweighs the state law!

[KJPA]

I have epilepsy which started when I was around 2 years old. It seemed to go away about the time I was 10. Unfortunately it resurfaced when I was 19. The doctors tell me it's common for it to recur around that age due to hormones I guess. I'm fortunate that since it came back it's only nocturnal (during night/sleep) and I haven't had one in the day since I was a kid. It's completely controlled as long as I take my medicine. Of course stress and sleep deprivation could make it worse so I have to keep that in mind and make sure I get plenty of sleep.

Unfortunately the meds take a toll. I've always been more tired and irritable which gets worse with age. It can be a side effect of the meds. Other people don't understand that but I can't let it bother me. I'm actually very lucky that I have two beautiful, healthy children, a loving husband and mother, other family members, and a medicine that controls the seizures! Life is Good! Not everyone else is so fortunate and I hope better solutions are found soon for all of us!

[Mtnbikegirl]

ibb38- yes, driving will be a challenge for my son too. He just turned 16. Mom's know BEST- I agree!

KJPA- Thank you for sharing. I've learned so much in the 7 days since this thread has been posted. My son forgets a lot because of the meds. He takes 10 pills a day. My family thinks I should get a second opinion, but his drowsiness is a side effect from the meds.

His neuro uses the reference of "keeping the horse in the barn." Whatever it takes to keep him from breaking through the barn doors and running wild, we need to do. Right now, 10 pills are needed to keep the barn doors shut.

[Mtnbikegirl]

LOVE THE PURPLE TOPS FOR THE TARTE PARTY!!! PERFECT MONTH TO HAVE A PURPLE TARTE PARTY!

[KJPA]

mtnbikegirl - Thank YOU for starting this thread. Best wishes to you and your family. Yes, you have to do whatever it takes to prevent any seizures. I've always been told each one can do damage so you don't want to have any that you can prevent. The medicine takes a toll but seizures are worse.

As much as possible let your son do everything that other kids do. Don't overprotect him. I was fortunate to have lots of loving relatives who took me everywhere and let me experience lots of activities. They also taught me many things before I ever went to school and treated me like a little genius I grew up thinking I was the same as everyone else! I just had to take medicine. I think it helps a lot to feel like you are part of the crowd even if you are special! And each child IS special!

Everyone have a happy day!

[sfnative]

On 11/10/2014 KJPA said:

mtnbikegirl - Thank YOU for starting this thread. Best wishes to you and your family. Yes, you have to do whatever it takes to prevent any seizures. I've always been told each one can do damage so you don't want to have any that you can prevent. The medicine takes a toll but seizures are worse.

As much as possible let your son do everything that other kids do. Don't overprotect him. I was fortunate to have lots of loving relatives who took me everywhere and let me experience lots of activities. They also taught me many things before I ever went to school and treated me like a little genius I grew up thinking I was the same as everyone else! I just had to take medicine. I think it helps a lot to feel like you are part of the crowd even if you are special! And each child IS special!

Everyone have a happy day!

KJPA,

I agree with the kudos as well! Purple all the Way!

And, I must impress upon parents reading this thread to do exactly as you've recommended: to let your child do everything that other kids do. My first seizure was at 16. I recall waking up in an Emergency Hospital then recall waking up in bed with our GP sitting on my bed pronouncing to me and my parents that I had had an epileptic seizure and would have an EEG the following week.

However, my family never spoke about this, ever, which didn't surprise me. I lived in a neighborhood of UCSF physicians and nurses and so asked questions of them (no internet and few if no books in the library to help me understand this). I was under-medicated and didn't realize that was the reason I continued to have seizures. It wasn't until I met the person who was to be my husband that I finally had an eval by a neurologist. That's when all the talking began.

Yes, please do let your child live life to his/her fullest. I would also think it wise to keep this neuro disorder to oneself, unless seizures are not under control.

[KJPA]

Sfnative! How awful! I can't imagine them waiting a week to get an EEG for you! So much can be learned right away with follow-up tests performed later.

I'm grateful that the topic is not so taboo today. When we were kids I think many people hoped that if they ignored it the problem would go away....NOT! (My first experiences were in 1961.) I was fortunate to have family who didn't feel that way and I got really good care immediately. I hope most people today do as well.

Glad you finally got the help you needed and best to you going forward!

[Mtnbikegirl]

Good advice ladies! Last week, I signed my son up for the gym where I go. For Christmas, I am going to get him some personal training sessions. He LOVES it!! We go every night. It's fun time together.

Also, he loves to draw, so I sign him up for art classes. I always tell the instructor about his medical issues because I would hate for him to have a seizure, and the person not know.

I wait outside in the vestibule, so they can reach me. Keeping his life as normal as possible is my wish, but the truth is, it's scary. I've let him walk uptown with his friends, but the entire time I'm pacing back/forth-scared to death!!

Do you know my son has 5-6 other kids in his grade that have epilepsy? In 5th grade, the school district held an assembly explaining what epilepsy is, and what to do if your friend has a seizure in front of you.

The school district has given him tutors due to his medical condition. He misses school, but they give him extra help to keep up.

Beside the one child not calling him again after he admitted he had epilepsy, most kids are pretty understanding.

I'm so thankful for the support the school district gives the children affected with epilepsy.

Ladies, did the school district provide support to you?

My son can feel a seizure coming on. Does this happen to anyone else?

[KJPA]

Mtnbikegirl, back in my day they did not give support like you describe. We moved a lot with my dad's job and I didn't have many friends. After three years in one school one of the girls I was friends with told me that someone told her to stay away from me because I might bite.

Well that could explain the reason kids were afraid to hang around me! It was elementary school after all and they are very impressionable. The school/teachers/admins probably tried to tell them to not touch me if I had a seizure and not put anything in my mouth and that's most likely how it turned into "I might bite." But since it took three years for anyone to even say that to me I had no idea what I was battling!!

BTW, I don't recall anyone else in my school having epilepsy but there were surely some. Back in the 60's and 70's I don't think they mainstreamed and unfortunately a lot of people with epilepsy have other problems. Some of them may not have been able to be in the "regular" classroom. I know I am one of the lucky ones who was not impacted much my condition.

Yes, when I was a kid I knew when a seizure was coming. I called it Deja Vu because mine was the type that made me feel like I was repeating things. I felt like I had done the exact things before in my life. Actually, these "auras" are a type of seizure that is commonly experienced before other seizures. Some people feel Deja Vu, like me, some smell something specific, etc. Now that I'm an adult and thankfully have only had them during sleep, I honestly don't know if I still have those feelings. And I don't have any seizures at all unless I try to cut back on my meds or forget them.

Speaking of cutting back, don't do it without the doctor's approval. I speak from experience!! It's not worth it even though you hate taking the medicine. It's just something you have to live with until research comes up with something better. If your (or your child's) meds are too limiting talk to your doctor about changing them. I'm sure they will work with you. But if the seizures are controlled that is big benefit.

I know a young woman who started having seizures around the age of 20. It took them years to get hers under control and you can imagine how her life has been altered. No driving, no full-time job, no living without her parents, etc. I think they finally found a combination of drugs that work for her but it's been a life-changing event. Especially hard when she was just about to "fly the nest."

Again, good luck to you and your son, mtnbikegirl! And let's all work towards the goal of finding a cure/fix for this sooner rather than later!! Thanks for the reminder!

[KJPA]

I know I'm writing a book I forgot to say that it's great that you are getting him involved with all the things he is interested in. And I know you make sure he eats well and gets plenty of rest!

Kudos to you for doing the right thing by informing anyone who has your son while he's away from you. They do need to know what to do so they aren't surprised by a seizure. And to know that he will be tired afterward. Most people are ""grown up"" enough to handle that