Recent diagnosis of epilepsy.

Maxine - posted on 10/25/2010

I have twin boys one just recently diagnosis with epilepsy. Wasn't feeling well felt warm and dropped and had his first 2.5 min seizure,horrifying. All the testing started after he had his scecond. One doctor told us partial Complex another from Sick Kids in Toronto told us generalized idopathic epilepsy. All MRI and CT's normal. 65% to 80% chance he will grow out of it. EEG's have now gone back to almost normal no spikes doctors seem pleased (What is almost normal?) He is on Valproic and Clobazam. It was a horrible summer. I cried everyday doctors would not let us go far from home. My now 6 yr old still sleeps with me because he and I are both scared. He has not had a seizure since Aug 4. He has had many types of seizures absent, drop, petet mal we just want answers to what is causing these. He was sick and he was cutting all 4 molars when this started and he got bit by something. The doctors think I was missing the signs but when I talk to his teacher she said he is very smart and with only 13 children in the class she would of noticed as she did the last week of school. I also starting giviing him Advil on Aug 4 as every time he would have a seizure he would grind his teeth not clench, grind and I felt his molars were part of the problem. Doctors say I am crazy but 3 molars are now in and EEG's almost normal. Wishful thinking but who knows. I just know that everyday without a seizure is a blessing and we continue to pray as we count the days as if we go two years without seizures and EEG's go back to normal we may wean him off his meds. He still continues to do well in school and we just signed him up for hockey. We find it hard to keep his life as normal as possible as well as ours.

Carrie - posted on 10/19/2010

Well, this is a wonderful place for support. I understand these feeling...my 3 year old was dignosed in March 2010. It is horrifing to say the least. You will feel that way for a while, until you decided that it is Ok that you don't have control over it...make sure you have a plan for when it happens, learn everything you can about it, tell people about it, train your family, friends, teachers...everyone in contact with your child. Then you and he will stop "suffering" and start THRIVING with this. Talk to people with epilepsy, ask them questions about how their mom's reacted, asked them what works, talk to other parents.....I met a young woman with the same kind of epilepsy as Carlee. I just grilled her and realized in the middle of it how invasive I was....she laughed and said, "ask anything you want." We talked about her and her mom....I was able to help her in her relationship with her mom because I could explain the fear and that it wasn't anything but fear. She felt kinda sorry for her mom when I left...we talk often now. I hope you will embrace it and like I said, THRIVE with it. Blessings to all of you!

Liza - posted on 10/14/2010

My 4yr old daughter has Epilepsy. She was diagnosed at 2 yrs old. She also has CP (preemie). She suffers from Partial, Absence and Tonic Clonic Seizures. We have tried every antiseizure medicine that a little one can take. Her seizure duration has improved from 20-25 min. long to no more than 5-10 mins. but we are experiencing more of them. Depakote, even though I hate the side effects (from all the meds) has seemed to calm them down more than others. Remember everyone reacts differently to the meds. What works for one may not work for another. Remember to comfort your child during their seizure, this will help to keep you calm. Write down everything you can when the seizure happens (duration, what body parts are effected). All this information helps the doctors. I still get sad at times because her seizures get in the way of her productivity at school and a simple cold w/fever can bring on seizures and side effects that keep her out of school a lot. It will get better for you the more you know about seizures. Do your research so you can know what the doctors are talking about and you will also know what questions to ask. It will get easier to deal with and before you know it hopefully the seizures will be gone. That's what I'm hoping and praying for as well.

Michelle - posted on 10/14/2010

Hi Ladies I hear everything you guys are going through my sons seizures started when he was 2 they did nothing but tests at that time and said to wait and see if he would have one again one year latter he had one that is when the confusion and the sadness and being scared started . We were seeing doctors in Sioux Falls, SD for four years with no results then they finely sent us to RodChester, MN and that is where we got the diagnose of Rolandic epilepsy but the doctor could not figure out why he was having seizures during the day. so now he is diagnosed with cluster seizures. He is taking two different meds now and they are working so far and for now. He also has been diagnosed mildly mental handicapped and many other things he is in the third grade but was held back a year but is still not really in the third grade because his skills are way below grade level. He is my oldest and I have two younger so I am dealing with role reversal with the two older ones and my youngest the baby he is just six months may have the same as my oldest because they have the same features. They look like identical twins but born years apart. it is very frustrating. :(

Colleen - posted on 10/13/2010

Stephanie what do your sons seizures look like? My son is 12 now has had complex partial seizures since 3 years old. Do they know why he started having them? We have been going thru this for 9 years now, its real hard to see your child have to go thru this and all the medications ect...Jacob has done very well through the years coping with this, better then we do as parents. We will always worry about them and just keep praying the seizures go away!! He has been on different medications through the years, seems like they put him on a med, as he grows they up the doses of the med then either the med stops controlling the seizures or they cant up that med anymore so try a new one. It gets very frustrating. But this site is really great to be able to talk to others going thru all this and even getting on the epilepsy website and talking to parents on there is great too. good luck.

Sherry - posted on 10/10/2010

I know exactly what you're going through. My daughter is now 10, and 3 years ago she had a seizure (complex partial) at school. She went through all of the std. testing (EEG, MRI, etc.) and was diagnosed with Rolandic Epilepsy. She currently takes 300 mg of Trileptal in the morning and 600 mg at night. She still hasn't gone a whole year without having a seizure, as she seems to get sick, or get off of her sleep schedule which can trigger them for her, but all in all, she's a very normal child. Over the years, I've learned to accept it and the shock has worn off, although my sadness for her remains over the things that she can't do by herself that she would have if not for the Epilepsy. Kids are resilient.... they do much better with the diagnosis than we do.

Lizzie - posted on 10/10/2010

i have 2 boys with epilepsy 1 with grand mal epilepsy and the other with petit mal epilepsy but getting worse. when my youngest started having his fits no1 wud tell me anything it took months be4 they told me it was epilepsy and they said he wud never grow out of it and that it will only get worse so he will need surgury to try and help at sum point they started him on meds witch so far none of them have sucseeded in stopping his fits atm but 2 months after finaly finding out it was epilepsy my 3 ear old had my eldest who is 4 had a grand mal seizure witch lasted an hour and a half and he stopped breathin they had to resusicate him its been an emotional rolercoster as they have been diagnosed with more things wrong with them but they r the same kind of things both of them have so it probably will b a rollercoster for you unless they can find the rite medication streight away x