Anyone have a child with Childhood Absent Epilepsy?

Yolanda - posted on 01/30/2013

My son was just diognosed with Childhood Absence Epilepsy he is only 4yrs i'm just worried about his learning the doctor said he might have a hard time in school

Wendy - posted on 12/27/2012

Can you by chance get to Massachusetts general hospital for the epilepsy unit? Or hospital connected to MGH? We are on nuerologist number 4. And doctors there are so helpful. Perhaps keep a log of behaviors, dizziness, headaches. Doctor told me frequent headaches and onset of puberty can be an opportunity for migraine headaches. Also some meds cause mood changes. So try to compare before and after taking meds. Limictal caused my daughter to become angry. Topamax caused her eye pain. Kepra has worked good so far. It's hard to figure out meds but keeping logs helped me keep track of behaviors.

Sandy - posted on 12/26/2012

Issa .... Joey is doing well now that puberty has settled down. Give you son 1 1200 mg. capsule of Lecithin every day. Over the counter for brain and nerve function. It helped Joey a lot. My sons main med is Trileptal (13 years now) and secondary is Vimpat. Could be options for your son. Puberty is hell. Please try the Lecithin for a couple of months and see how he responds to it. His doctors will tell you that it won't help but take it from a mom who will and has done things that doctors said would not help. You do NOT know what is going to help until you try it!! Good luck.
Sandy Lora

Issa - posted on 12/22/2012

How is your son doing? My son is 11 and going through puberty. He was diagnosed with absence seizures at age 7 and until last year they were well controlled with ethosuximide (zarontin). We then switched to keppra which was a nightmare and now he is on lamictal. I know that a lot goes on at many levels during puberty but I am feeling as though something is not right. He is having breakthrough seizures so the neuro has increased the meds (after doing a 48 hr. EEG). I was always under the impression that the absence seizures would go away and it was not a big deal. Now I am wondering if it's something more. It's hard to know because of the changing hormones. He is having trouble retaining things he has learned at school. I am wondering if it's the medication?

Rachel - posted on 10/21/2009

my daughter was diagnosed when she was 5 she is 9 now. She was a bright, intelligent girl (still is) but she starting getting in trouble at school all the time, her teachers would send me notes saying she wasn't listening, she was talking out of turn or would suddnely wander off in any direction except where she was supposed to be. I began to notice that when I was talking to her her eyes would roll up, and she would seem like in a trance. She has been on Zarontin for 4 years now, she still has several seizures a day and will be seeing a new neurologist next week.

Sherryl - posted on 10/10/2009

Ok Moms here I am. My child was in a coma for 3 weeks when she was 3 due to meds from a life threatning illness. When she was close to 4 we starting noticing her clicking her toungue, staring into space and gagging. I told the drs but they said that I was imagining things. After about 3 or 4 months of this we were at the dr office for other treatment when she had one of these episodes the I imagine. I ran and got a nurse and said" ok this is what I imagine". She said Wow, she is havind a seizure. It has been a horrible road . She is now 31 and seizures almost daily. She has brain damange and has had so many health issues that she is God's miracle that she lives past 3. She has been told that she is having complex seizures and she is making herself have them. Also that she doesn't even have them that she is faking it all. This drives me crazy. I wanted to know how a 4 yr old that is back to being a 1 yr old knows how to fake. Anyway if you have any ?'s I will try my best to explain all she has been through to help you cope and understand all that I can. People say that they could never do what we do. I say that for your child you will do anything. Good luck to you all and most of all, May God bless you and your children.. Sherryl Luna, Lawrenceburg ,Tennessee

Sandra - posted on 10/10/2009

That is wonderful. Keep on fighting for her Mom. You are doing great

Margie - posted on 10/10/2009

My son is 11 and I knew there was something seriously wrong with him at the age of 3 but the doctors kept telling me there wasn't anything wrong. I pressed the issue until I was sent to see a specialist he was 8 by that time. I was told he had a fluid filled tumor on the back of his brain stem which was causing the absecence seizures. I am now being told that what it is called is Partial Complex seizures. We tried several medication until finding Lamictal was the best meds to control the seizures. He still has breakthrough issues but they are rare. Most meds he took before this one made my sweet little boy into a mean sour monster. I currently take him to a Loma Linda Ca. Neruo clinic. they are a great team. I have lots of stories about the ups and downs of over medicating and misdiagnosis of my sons condition, If you have any questions or just want to talk about their condition send me a message. Good luck.

Jo - posted on 10/09/2009

Hi, my daughter, Sian was diagnosed with Childhood Absence Epilepsy when she was 7. Her class teacher had noticed that Sian would have blank episodes. Once she'd been diagnosed she was put onto Epilim (Sodium Valproate). This made her absences more pronounced, gave her terrible mood swings and zapped her appetite. Our doctor was very reluctant to believe that this medication wasn't right! So Sian was also prescribed Lamotrigine. Her mood swings improved but the seizures remained! Eventually, at the age of 9 she started taking Zarontin (Ethosuximide). This medication has really helped. At the start of 2009 her doctors thought that Sian had grown out of her epilepsy as she taking a really small dose. After weaning her off the medicine it became clear that the epilepsy hadn't gone away. So she's back on Zarontin, and we're due to return to the hospital later this month and I think we're going to have to up her dose a little as her low dose no longer keeps Sian absence free.

I have watched my daughter as she's struggled. Her confidence really took a knock and she just wanted to stay indoors.

Sian is 11 1/2 now and she started at Secondary School in September. Going to high school seems to have been a turning point for her. She's starting to catch up in school and that's mainly due to her determination to not let the epilepsy spoil her life. She's also joined the Scouts (and is off on her first sleep over tomorrow) and she's been going to a Youth club at our church. All in all, it's not been an easy road, but it's been our road. I'd say don't be afraid to question doctors as you're the one who spends each day with your daughter and you'll know if she's not responding to medicines. Also our biggest fight has been trying to explain her condition to her teachers. I've had to make a bit of a nuisance of myself to get the right support for Sian!

Jo

Connie - posted on 10/08/2009

My middle son has this kind of epilepsy (spells) where it was lights on but no one was home. He is now 8 and they have slowed down alot; unfortuantley he has increased on grand mal seizures. It is along scary road ... we went through the same kind of things; meds would either make him a walking zombie or a devil child who we could not control ... it was like his personality was no longer there. All I can really say is that the last year it has got better ... also make sure her teachers are aware because when he is having one of these episodes she is not taking anything in and will not remember anything about that time frame. Keep your chin up and good luck.

Liz - posted on 10/07/2009

Fran your a wonder :-)))) glad to see good people.

Liz - posted on 10/07/2009

Ty Sandy! Yes she does fom day 1 (IEP). She has come along way.

Ardeen - posted on 10/06/2009

Hey Fran, I've only ever heard them called Drop Seizures. But then there are so many different types it's hard to remember the technical names for them.

Sounds like you truly have your hands full. Bless you for taking on two children who obviously need extra love and care. You are a wonderful woman!!

Fran - posted on 10/06/2009

We have 2 children with epilepsy. the eldest [12] has lots of absences with some days worse than others. we have to say things over and over and then of course sometimes she hears the 1st time - and we get the 'ok! no need to go on and on mum!' It is not possible to win! She feels sick and will chuck up in a big way, then sleep, then feel fine and be very hungry. we look like crazy parents if we are out and go through this routine - luckily our friends know about it. the youngest [11] has drop seizures and since medicating has ben clear for the last 3 years. Both our two have learning difficulties, maybe as a result of undiagnosis or feotal alcohol or past experiences or genetic? we adopted them both so our info is a bit limited. we feel probably it is a combination of all factors. they both go to a special school but even there they forget about the absences and one teacher in particular shouts if they don't catch the instruction first time. our eldest can read / write to within 3 years of her age but understands only to the level of a 4 yr old. the youngest has good understanding but cannot read or write! we could do with that melting pot in our family!! not sure i have been any help here but it has made me sit up to find my two aren't the only ones! when our youngest had a series of fits and was taken into hospital age 6 the doctors all came round to see her fall as none had seen the effects of this type of epilepsy before - does anyone know the official name of it? regards [frazzled] Fran

Ardeen - posted on 10/05/2009

Hello Ladies.

My daughter was diagnosed in July of last year. I started noticing her staring off and not paying attention, her grades were dropping alot. We recently moved out of state so I had originaly thought it was that but then I caught an absence seizure, accidentally, on video. I took her to the pediatrician in April and was referred to the nuerologist. She was having 30-60 a day at that point. she was put on Zarontin which got us to maybe 3 or 4 a week. Dec 13th out of the blue she had a grand mal. She was then put on Depakote and I am happy to say she has not had one seizure since the one in Dec. The depakote has been our wonder drug. The only problem is that my 12 year old went from weighing 90lbs to 130 in one year!!! Worst time of a girls life to gain so much but we are doing our best to help her with that too.

Our Dr. also said she has about an 85% chance of outgrowing this. My husband had epilepsy as a kid and he outgrew it so we are very hopeful.



Liz, like the rest of the ladies said, no locked doors, 9-10 hrs sleep and good food. Shannon also has many allergies so her diet is extremely limited. It makes it hard to keep her on a healthly diet but we do what we can.

The only thing I have not seen mentioned were 3 things our nuerologist said were a must. NO caffine, NO chocolate and NO red dye!! All of these things can aggrivate epilepsy. Add that to her already limited diet and it makes shopping rough but I've found lots of stuff she can have. Halloween is a nightmare but she gives the candy away to all her friends!! LOL



It was a big adjustment for all of us but she is doing well now. Because she fell so far behind in school she still struggles but even that is getting a bit better now. She has some really great teachers this year and I am working on finding out how to get her a bit more time for tests. She seems to have a very big problem in Math, which I have read is common for children with epilepsy.



If any of you ladies have questions or just need to vent, feel free to contact me!

Beth - posted on 10/05/2009

my son went through the same thing. Most important, treat her normal. Don't limit her. Stay on top of the school thing. she has rights. In writting request testing immediatley. Have her dr's write letters to back that absent seizures can disrupt her learning as to there is no way to know exactly when she is having them. Keppra has been our wonder drug to get them undercontrol, but has side affects of moodyness. big time. LOL. Don't give in either just because she has special needs. I learned early on that they will use this if able to make excuses, I wrote a comment about the challenges I've faced, but the joy it has been watching my son acheive anything he wanted too. He is know 16 , drives, swims for high school, plays football, baseball , golf, is a Jr. Firefighter and never stops. Make sure she eats good , plenty of veg. and fruit, , make her get pleanty of sleep, Our dr. told us to get atleast 9 10 hours. ever night if possible. His seizures were worse as his stress or anxiety levels increased . Keep an eye on that. My son takes an anxiety pill only when he needs it . especially before exams or hard test, and use to take it before his swim meets and football games. He is always keyed up and we didn't realize that he was making them worse.

Last, THey can grow out of this kind. our dr. told us that normally occure between the ages of 18 mo. and 21 years of age. If they don't grow out of them, they could turn to Grandmal seizures as adults. Keep your chin up it could be so much worse. U will learn to work through them . Good Luck and keep in touch if I can be any more help.

Sandy - posted on 10/05/2009

Does your daughter have an IEP set up for her? It's done with the special education section and could benefit her a lot if you are able to do so. You can put restrictions on stuff and even add time to testing if needed. It is unique for each child. She may have some neurological or learning disablities as a result of the seizures she had. Do what is best for her. Have her evaluated by the school. If there is a problem .. better to begin fixing it now!! I know it's hard but you are doing a great job!!! Thank you so much for the compliment!!! You made me smile! I want to help others in any way that I can so that we can all have resources to help us deal with our kids, sick or not. : )

Sandy

Liz - posted on 10/05/2009

Thank You. Been going through the school thing! They say shes mentaly challanged. She's not though she was having seizers.Sh'e learning like crazy now, they say she will have grand mal when she's a teen, if I had not tooken her off the med. ( for bipolar anADHD) I would of never of known.

Sandy - posted on 10/05/2009

Sounds harsh but your are lucky she has only absence seizures. My son has absense and petit mal seizures. He has in the past had drop seizures where he would just fall to the floor. He has also had some more generalized seizures which are even worse when his arms and legs start moving.

Just make sure you find the right med for her and things should go well. She needs to be watched a little closer, especially in school. Don't let the teachers think she is spacing out and not paying attention. I already went through this a couple of years ago. Joey isn't paying attention during my talk. Duh! He was having absence seizures. No locked doors is the number one! Joey loves to do that and he has gotten yelled at more times than my hoarse throat cares to remember. He is a kid!!! It's fun to them when they drive you crazy!!

Best of luck and always feel free to ask any questions or to help others on here. We are here for each other to bounce off of!!!
Sandy

Stephanie - posted on 10/04/2009

My son was diagnost at age 15 with epilepsy. He had a grandmaul seizer. I didnt realize that at his younger age he was having small seizers when his eyes would twitch, or he would just stare. but he will be 21 years old this month, has been on dilantine, doing great. he will have a seizer if he doesn't take his meds. Once you change routines- it gets pretty normal. (no locked bathroom doors!!) hang in there!