"When are you "Controlled"?

[Funnibunni80]

Hello, I'm new, and my daughter is 14 years old. She had a seizure in April, and was diagnosed with Epilepsy in August when she had seizure #2. We started generic Keppra then. At each subsequent seizure, her neuro upped the dosage, and her seizures became more and more frequent. After hitting 1000mg/1000mg, he added Depakote, but the side effects were unmanageable. (Terrible depression) so we are on Lamictal with the Keppra now. (Both generic.) She was hospitalized after she had 2 seizures only 7 hours apart. We caught it on video, and now know that her seizures are Secondarily Generalized, vs the Tonic-Clonic we previously thought. After 4 days in the hospital on the EEG, and staying seizure free, he released us saying we had "achieved some measure of control".

My question is, how long do you have to be seizure free to be considered "controlled"? I just want to breathe a little easier. Today, we are 9 days and counting, so that is a blessing.

Also, any advice on talking to her about how to deal with... Stuff? She read about SUDEP last night, and is kinda freaking out a little.

Thank you in advance. I'm glad I found this place. Is there a document where all the different rooms are explained so I know the correct place(s) to post?


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[Ruth]

My question is, how long do you have to be seizure free to be considered "controlled"? I just want to breathe a little easier. Today, we are 9 days and counting, so that is a blessing.

Also, any advice on talking to her about how to deal with... Stuff? She read about SUDEP last night, and is kinda freaking out a little.

Thank you in advance. I'm glad I found this place. Is there a document where all the different rooms are explained so I know the correct place(s) to post

Hi, I have never heard of epilepsy being "controlled." There is always the possibility of having a seizure. As long as she is seizure free, she is doing well.

Assure your daughter that SUDEP is very rare. Some things that you hear about just will not happen.

Count your blessings for each day that she is without seizures.

Press on the Epilepsy Forum at the top. Look at each room of the house. Each one explains what the room is for. Like the Foyer Room is to introduce yourself.

 

[Fedup]

Funnibunni80

Everybody is so different it can depend on what you consider being controlled, in saying that every day you are free of a seizure is being controlled in my opinion, every day without a seizure is a blessing. In truth you will eventually decide for yourself what you think is some control.

Its not easy to talk about death at any time let alone to a young teen, however you need to reassure her that what she reads does not mean its going to happen to her. What she needs to concentrate on is getting better after a seizure.

 

[Dutch mom]

For driving a car epilepsy has to be 'controlled'. In The Netherlands when someone has had one seizure, one has to be half a year without any seizures to drive a car. When someone has had more seizures, this is one year. So half a year till a year is considered 'controlled' depending on whether you have had one or more seizures.

For driving a truck or a bus: when a person has had one seizure and uses no medicine, he/she has to be five years without any seizures before driving a truck or bus. When someone had had more seizures, he/she has to be without medication and 10 years without seizures.

 

[Ruth]

I had epilepsy since I was 6 years old. I especially remember my teenage years.My mother tried to control me, not just my epilepsy. Believe me, I had a miserable teen years.

One particular year I wanted to go to the Girl Scout camping trip. My mother said yes. I thought great, I can ride horses, make friends, go swimming and hiking.

Right after I got off of the bus that took us there, I saw where the horses were and I went riding with a group that had the same idea.

After I came back, I was called into the office. My doctor had said that I could do none of those things. The only things that I could do was keep our camp clean and wash the dishes in the cafeteria. I wrote a letter to my mother and told her if I could not do any of the fun things, I wanted to go home. She wrote me back and said that I had to stay. She said that she knew what the doctor had said.

At home, I had a horse that I went riding. I went swimming and I went for long walks. The difference was my father. He believed that I should live a normal life. He had epilepsy, too. So did my sister. My father also allowed me to share in my medicines for my epilepsy. With discussing I felt that I was part of the team.

Maybe, you could discuss with your daughter how she feels about epilepsy. She should join the forum too. She needs to get all of the accurate knowledge that she can about epilepsy and work with you.

 

[Funnibunni80]

I actually suggested she join the day I found it. She's considering it.

I have been pretty restrictive this week. I'm really hoping that things lighten up after our appointment tomorrow. After 10 days seizure free, I'm feeling pretty positive!


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[Belinda5000]

You are controlled when your not having sz's It's 6 months in my state you have to go sz free before you can drive.

 

[Ruth]

There are some teenagers on the forum. Dutch Mom's son is one of them. Why don't you give her a PM about it.

Going without a seizure for 10 days is good, you can lighten up now.

 

[Funnibunni80]

11 days now. And she just woke up with a high fever. No neurology appointment today. I'm super bummed. Hoping we can do a phone consult instead. Knowing her, she won't be leaving the couch today. Poor baby.


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[Fedup]

Funnibunni80

Everything will come together eventually so do not worry the important thing is she gets over the fever.

 

[Ruth]

Is she up to a phone consult today with a fever? I know when I was sick with a fever in my teenage years, I didn't feel up to doing anything. I just needed rest and liquids.

Give her a :hugs: from me.

You can rest today.

 

[AngelaVA]

Controlled generally means they are not having seizures BC of medication but then of course we all know there are many degree of control that are less than that but significantly different. My child is young and doesn't have to worry about driving yet so right now we are considering controlled enough to be she only has a seizure when she becomes ill or exhausted and then only one seizure and not a cluster. If her seizures cluster or occur at other times we make medication changes.


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[Belinda5000]

control now what's that I've never had a license because of my sz's in all my years; I might make it to 2 months seizure free in December but I wouldn't get my hopes up.

 

[valeriedl]

I would consider controlled is when you are not having seizures at all.

I think of myself as somewhat controlled. When I was first diagnosed, 12 years ago, I was having around 20 very bad seizures a month. Over the last few years I've only been having about 7 a month and they are nothing like they were in the beginning. I have a feeling that I'm always going to have seizures, the number might decrease though.

I'd try to get her to join the forum. There's so much I've learned about epilepsy on here. It's great that you can ask a question and find out that you aren't the only one in the world who is having the problems you are! People give you great advice about things too.

If she joins and doesn't want you to know who she is just have her not tell you her user name, and don't tell her yours if you haven't already. This way if she asks things that she wouldn't want you to know then you wouldn't and the same goes for you.

 

[Funnibunni80]

Everyone has been so nice here. Thank you for all your replies.

Our neurologist was able to see is later on in the day despite the fever. So I'm thankful for that. He released her to go to school. He also lifted all her restrict ruins, except swimming (but it's too cold anyway) and staying anywhere overnight without a parent present. Everything else, he said just use common sense. So that's a huge relief. 2 more days in the brace, and she's out of that too.

She gave us a scare with this illness she's having. She popped a rash, and we were afraid it was the one we were warned about, especially with her "flu-like" symptoms. But we agreed to wait until morning. Today she's at 100%. 13 days seizure free, no fever, no stomach problems, and most important, the rash is gone too. She is currently at school. I feel SO RELIEVED. I really hope this dosage of drugs works for her. He upped her Lamictal to 75mg twice a day, and in 2 weeks we'll go up to 100mg twice a day. He's hoping that this will be the dosage that controls her. Thank you all so much for your kind words and advice!


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[Fedup]

Funnibunni80

We only try to help and if we can that is good.

That is good news that he seen you and lifted the restrictions or most of them anyway. All you can do now is wait and see what happens, its not a nice thought but its all that can be done. I wish you both the best of luck.

 

[seagull]

In uk 2years sz free before getting driving licence back but as said that just legal thing with cars and heavy equipment.
As said each of us has different ideas on the subject nobody right or wrong it individual thing.
Sound like needs help with depression maybe some of her peers with similar problems although these days you need be aware of who or what websites young people.
I hope things work out soon for you and daughter