Do Seizures Ever Get Easier???

[rcernansky]

I am new to this!!! My daughter (5-yrs old) was diagnosed in May with having CP seizures. I went to check on her to make sure she was asleep and she was sitting up in bed having a seizure. My husband had left a few hours before for a business trip ... so I was on my own. I called 911 and was taken to the nearest Children's ER. CT was clear and ordered and EEG. EEG showed abnormality - diagnosed with CP. At first the neurologist thought it was less risky w/no meds but after two more seizures we were prescribed Trileptal and Diastat. She had another seizure and we gave her the diastat (lasted only 8-min as to the past lasting 15-20 min). At that time they increased her Trileptal. About 4-wks later, we were having lunch w/friends and she felt a little warm, didn't think anything of it and before I knew it, she was seizing in my arms. Another trip to the ER. I feed like now we just are playing a constant waiting game. I have an 8-yr old son and he seems to be dealing with this harder than any of us. My husband and I are living as the past is over and we just need to be ready for today. This is still so new to me that I have such mixed emotions (sad, angry, confused) ... how does a child with no other medical conditions just wake up one day and have a seizure for no known reason??? I have never posted on anything before but I just need to know there is someone else out there feeling the same as I do.

[lacyndarella]

So far, NO.

You get used to them in your life. You know how to live with them.

But they suck. And they hurt. And they frustrate.

No they don't get easier. They just get old.

Lacy

[lacyndarella]

The "NO" was to the question in your subject. Yes to the feeling the same way you do. Sorry. I need to be more clear sometimes.

Lacy

[apmom]

((((((((Rcernasky))))))))

I'm so sorry you had to find your way here, but glad you did. My daughter was also diagnosed at 5 with CPE, we've been living with this for 15 months. The forums are a wonderful source of support and information, but please remember that most find control within the first or second medicine, and many of us who are regulars are parents whose children fall into the exception, with difficult to treat or resistant to meds e. The good part is there is always someone will understand, and have experienced something similar. By the way, I had never joined a forum before this either. :eek:

I'd like to recommend a book, Seizures and Epilepsy in Childhood by Freeman, Vining, and Pillas. It's clear and easy to understand, explaining various types of e, meds, and tests. If you haven't already, start keeping a sz log; what time, what type, what she was doing, how long it lasted, etc.

Also, check out the EFA, www.efa.org The site can be glitchy, but there are many parents on the Parents Helping Parents forum all the time, and it's also free. :)

I also have two older children, and it is hard on everyone. :( Seizures can be frightening, and it's always hard, but little by little you do learn how to handle the day to day, what really works for you, your child, and your family. Some days are better than others. :rolleyes:

*heart

[Mom2Ava]

Hi there. I am very sorry your child is having seizures.

My daughter began having CPs around her second birthday. Unfortuately most of her seizures went status ( prolonged siezures).
We used have to use diastat once or twice a months and were frequent visitors of the ER. Her seizures are now fairly well controlled with a dietary treatment.

I see your child is on Trileptal. I realize everyone responds differently to meds, but Trileptal is a med I like to tell parents to be cautious of ( course you have to be careful of all meds).
Some have done great with Trileptal, but many have had increased seizures. The thing you need to be careful of with this drug is low sodium. Is the doctor monitoring this?
Low sodium, hyponatremia, itself can cause more seizures including status episodes. If your child is not getting better on trileptal don't be afraid to question the possiblity of a different med.
There are lots of good seizure drugs out there AND there are lots of good treatments if meds fail.
Lots of really good and effective dietary treatments.

I do believe things get easier to deal with, especially when you are able to find the treatment for your child.

As APMOM mentioned, the EFA parents helping parents forum is a great place to go. Having the support form other parents has been extremely helpful to me and most certainly a sanity saver.

[LIZARD]

I cannot stress this enough: Anytime a CT is normal and problems persist, an MRI needs to be done. CT is not nearly as good as MRI and will often miss things an MRI will pick up. Please insist on getting one.


((((((((((((((((HUGS))))))))))))))))))), and good luck!

LIZARD :)

[scottybug]

Hello! My son was diagnosed at age 7, his were not really out of the blue as he had some brain injury at birth and were warned they may appear one day. I wanted to let you know that you are not alone, seizure suck and I haven't slept solid in 4yrs (my sons are nocturnal)-however they do eventually move to the back of your mind and you start living for the future after a while.

Scott takes Trileptal and we have had excellent experience with it, he has only had 1 seizure in the last 4yrs since starting the medication and he was sick at the time which can lowere his threshold. Scott has his blood checked every 6mos to keep an eye on levels and sodium. Scott has had very little side effects (if any) from this medication and we are very happy with it.

This being said-all medications are not for all kids and all kids react differently, but keep your head up (easier said then done), it's possible they just haven't reached the appropriate levels for seizure control for your child yet.

[shanunlee]

Welcome rcernansky and scottybug!

It hasn't gotten any easier for me a year and a half into it. All my kids have been healthy since birth and rarely even get the usual junk kids get because I homeschool them. Then, out of nowhere one day at eight years old, Julia has a seizure. I suspect she has some kind of activity in her sleep, but her neuro isn't concerned and I cannot prove it. She has had 6 CP seizures that generalize so quickly that my first tip that she is having a seizure is that she is unconscious on the floor.

rcernansky, you ARE very new to this. I second the suggestions to check out EFA. I would be over there myself if I wasn't having so much trouble with the site.
Scottybug, glad to hear you have control with the first med!!!

[crickets mom]

Hi, So sorry you are having to deal with this. Ds had his first febrile on his first birthday and over the course of the past almost 6 years he has had 7 febrile and too many myoclonics, absence and atonics to count. Does it get easier???? I dont think so but I think it just becomes an automatic response type of thing and that makes it easier to deal. In fact during ds' fourth febrile we were in the drs office because we were out and I sensed one was coming and I was actually calmer than the dr. For me one of the hardest things to deal with was the feeling that I was alone because I didnt know anyone else dealing with the issues that we were. That is until I found the parents helping parents forum at the efa site and this site. It helped me enormously. It helped to know we werent alone and to be able to ask questions to people who live it just like we do that I feel stupid asking the drs.

[forr2grls]

No it doesn't get any easier.After 7.5 yrs dealing with my dd's seizures I would say that its umm a fact of life for us right now.My heart still races,I still get shaky,nervous every time she has a seizure.

Paula

[shanunlee]

I dont think so but I think it just becomes an automatic response type of thing and that makes it easier to deal. In fact during ds' fourth febrile we were in the drs office because we were out and I sensed one was coming and I was actually calmer than the dr.

So, so true, and I found that to come quickly. I think it is a matter of learning what to expect maybe??? Julia's third seizure was at church (tonic and only about 30 seconds) and friends commented to me later how calm Jeff and I were. Well, freaking out wasn't going to help Julia much when she regained consciousness! My mother calls it "controlled hysteria". :confused:

[crickets mom]

The thing I forgot to mention in my original message is that after a "scarry seizure"... after he's asleep and I know that I have done everything I can do for him and whoever witnessed it is that I take my "5 minutes" If I'm home I go into my closet if I'm out I sit in my car alone and I let myself decompress. Sometimes I cry, sometimes I yell, sometimes I curse but no matter what it takes to get that emotion out I do it where no one can see or hear me. No way do I want my son to ever see me upset because I dont want him to ever think he causes me pain.

[rcernansky]

Thank you to all that have posted. It makes me feel so much better to know that there are other parents going through the same feelings I am.

The only thing I have found with posting on here is that I am reading so many different scenarios and have to remember that my daughter is not like everyone else. Everyone has their own situation. I read on a couple of posts that the fall may have a tendency to show more seizures. Now I am on edge that another one is coming. Does this feeling ever stop??? I feel like I am just waiting for the next one to hit.

Again, thank you to everyone for all your kind words.

Corie

[CasaDe]

Hi Corie!

My son was diagnosed at 5, and my daughter was 8. Like your kids, my daughter reacted far worse than anyone else, and still does, though we try to keep her involved.

Jimmy was diagnosed a year and a half ago, and we still watch out of the corner of our eyes, just "knowing" that the other shoe will drop soon. We are not like many - we often go months with no seizures at all, so you would think we had learned to enjoy the silence. Nope!

The only thing that changes is that you get used to living on the edge of your seat. I'm not sure if that is a good or a bad thing, though!

[clinn3]

It's really like a roller coaster for me. Sometimes things are great, but when things go bad it is really tough. But I absoutely know how you feel. I hope your son will find control quickly!!

[Denae]

For us is has gotten "easier" in the sense that we understand them, and expect them, and know what to do when the bad ones hit.

Knowing that epilepsy will always be a part of Rileys life and will always impose limitations, and is slowly taking parts of Ri away from us will NEVER get easier. Every day I want to cry that it is unfair, every seizure reminds me of those things.

E sucks from the first seizure (just before she was 2) to the one she had an hour ago..

[shanunlee]

E sucks from the first seizure (just before she was 2) to the one she had an hour ago..

:( *smallrose