hi cc welcome to our site..................sorry to hear about your chld having these problems....there are some great folks on here who can help u with any questions u may have.......i pray it gets better cc........take care and god bless..........

Been down the road before.  Feel free to email me if you need to talk.  I am not a fan of any of the seizure medications but have no choice but to poison my child with them. 

 We have recently had vns surgery.  We've tried Lamictal, Depakote, Zarontin and Topamax.  Depakote seems to be the only one left he can tolerate and that isn't saying much.  VNS has improved Aaron's (age 10) attitude and behavior but he has not been the same child since this started years ago. 

Topamax made Aaron downright psychotic.  Zarontin made him an aggressive bully and depakote has turned him into a ball of emotions and you never know what Aaron your gonna get.  Age has helped him though.  I think the older they get the more control they do get over their over active emotions.

Bottom line is there has to be better options out there.  We need to find them.

www.aaronsbattle.com

Hi CC, This is Diane again, sorry my computer is not working well!!   You need to get your son a neuro-developmental evaluation.  This is a specialist who can tell you if he has any signs of Autism or Add, besides the Epilepsy.   Also, you need to talk to your sons pediatric neurologist about whether the depakote could be the cause of his behavior problems.   I would also suggest that you contact your local board of education, and get him an evaluation.  At three, he could possibly qualify for special education in school.   Go to www.familyvoices.org and click on your state.   You son probably needs some therapies that could help him, and at age three, he could go to school and get help there.   I live in NJ, and there are multiple parent advocacy groups here, we have the highest number of children with Autism in the nation, its really sad.  I hope these suggestions will help!  Diane

Hi, my name is Diane.  I have two children, ages 4 typically developing, and my 2 year old son, with myoclonic Epilepsy, and various developmental delays, external hydrocephalus (too much fluid on his brain, but it seems that he has outgrown it now) and some hearing loss at birth.    My son is just turning two, he was diagnosed a little over a year ago, he was 10 months old then.   We have done lots of therapies over the past year, his fine motor is actually the best area, his biggest delays now are speech and gross motor.   He is also wearing braces on his ankles now, they are called SMO's.   They are helping, he has only had them for a couple weeks and already he is walking better, and falling less.    I have started signing with him, and he Knows the Magic word is please, he signs it, but he doesnt say it yet, we are also doing speech therapy.   So far, he has been doing well with Phenobarbital, his doctor thinks that we should not keep using it indefinitely, because it can cause cognitive problems.  So, in a few months, we will try to see if he can be weaned from it, and if we need to replace it with another medication.  He has come a long way in the past year, and I just hope that he keeps making progress.  We were very lucky, when he was diagnosed last year, we were thinking he had infantile spasms, that was not the case.   I have a dear friend who has a son who has IS, and was recently also diagnosed with LGS, both rare and very difficult to control forms of Epilepsy.    So far, my son does not show any signs of Autism, and his cognitive area seems pretty good, so we are doing as many therapies as possible.    If you are interesting in using sign language, check out www.lifeprint.com   its FREE!   I hope you will be successful in helping your child.   God Bless you, Diane

hi im from wales in the uk and my 3 year old was diagnosed with myoclonic epilepsy about a year ago when he was 2 and a half. at first me and my family just thought they were little jerks that he'd grow out of, his eyes used to roll to the back of his head and his hands used to jerk upwards. they were getting more serious to the point where it would make him stagger into  wall or throw his bag of crisps in the air. poor thing! i took him to the doctors who referred me to the hospital and was eventually diagnosed with this epilepsy. he is now on epilim twice a day,4mls. although this has stopped his seizures, the epilepsy nurse i speak to has said that disruptive behaviour comes with it. my son has really disruptive behaviour, he sometimes just goes on 'one'. he has also been asked to leave two nurseries! if anyone has got the same problems please let me know if you have any advice. hannah

Hi, just thought I would add a few things. My grandson was diagnosed with seizures about a year ago. He's now 4. I'm not sure exactly what kind he has, but when he has one, he usually nods off for a few seconds. He's on lamictal in the mornings, and depakote twice a day (not sure of the dosage). He's on the kind you sprinkle on food. He still has seizures though they are less than what they were. He also has behavioral problems. Mostly he hates to share. He was biting for awhile, but that stopped. He gets frustrated easily and will have meltdowns. He hates noises and throws a fit every time he gets a haircut. He has delayed speech, and is getting speech therapy which has helped somewhat. But he's very hard to communicate with. He also has problems walking and running. He can now jump, which he wasn't able to do for awhile, but he scares me walking down stairs. We have stairs at our house, but one of us is with him at all times. I worry that when he's at school, they will get careless about watching him and he will fall. He's enrolled in early childhood development. He is behind where he needs to be. I'm hoping that with therapy and the right medications, he will get better. My feelings are that the epilepsy and the behavior go together. They once thought Aidan was autistic, but his neurologist and an autistic specialist said he was not. There is no epilepsy in the family that I'm aware of. Sure wish there were more answers out there. It's frustrating for the parents and the child.  Good luck to you.

Thank you for your response. I can’t begin to tell you how much it helps to hear back from someone. And I wish Kaitlyn, you and your family the best.

My son is being seen by a neurologist in my hometown. We have frequent calls/visits to discuss Tyler’s progress and I have a list of questions to ask him including SPD.

 Right now he is diagnosed with just plain myoclonic epilepsy. I didn’t realize progressive myoclonic epilepsy was another diagnosis.  We started seeing signs that something was wrong in August 2007; a month before his third birthday. Tyler’s pediatrician first said it was a “tic” because Tyler would jerk his head to the right and lock his jaw. He asked that we monitored him in the upcoming months and to call if the symptoms increased. Shortly after, Tyler started raising his arms over his head including the other symptoms. Then he started stumbling backwards and sometimes he stumbles so hard that he falls to the ground. We called his doctor immediately and he referred us to a neurologist, which we had an EEG done the following week.  Tyler continues to have seizures till this day. He is now biting his check or lip. We haven’t discussed other medications with his neurologist as of yet. He wants to see how Tyler does this week with five capsules a day. If he continues to have them, a second medication will be added to Depakote. His MRI was good and we visit the lab often to have blood work done. I would love to keep in contact with you! Cynthia.rojo26@yahoo.com 

All the best!