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alexmom

intractable seizures in 2 year old

Hi everyone. i have a two year old who has seizures that have not been controlled by the past three medicines: trileptal, keppra and zonogram. The doctor is guessing Dravet syndrome. My son is 2 years old and has about four seizures a day now and has delays only in his speech. He understands everything we say. From what i read of Dravet syndrome, children develop this very early in infancy. Alex just started having seizures at 19 months and delays are not severe. Doctor is saying seizues and cognition will get worse and worse!! We are having such a difficult time believing that our son is going to deteriorate from this point on. I would appreciate any input from someone who has a child with similar symtoms or has some knowledge of this seizure disorder.

Comments

Re: intractable seizures in 2 year old

I'm sorry I don't know anything about Dravet syndrome. I do have a question for you though. Can you tell me about zonegran? Any side effects, anything in particular about the med you may want to share? I am looking into changing my daughters med and thats one of our options. She is on Keppra now but its not working and we are having some side effects with it. Sorry I cant be more help to your situation.

 Thanks

Dawn

Re: intractable seizures in 2 year old

hi i have a son whos 4 yrs old he has intractable seizures. he first started having seizures at 9 months. hes been tru so many medication. topamax,tranxene,zonegram,keprra,depakote and now banzel. he was diagnose with autism at 2. he dsnt talk or do anyting a child of 4 should do. my son said mama  and played with his toys before the seizures started. so it its possible for him to lose that since everytime he has a seizure it causes damage to his brain. im very sorry for what u are going tru. im yet to make a big decision since my son is still having seizures and the medication is jus not working for him. :(    sincerly  foreveryours.ca

Re: intractable seizures in 2 year old

Hi, my daugher is also 2 yrs old and her neuro is thinking she might have Dravet's as well. Her first seizure was at 15 months and it was febrile. She did not have anymore until 10 months later which was 3 weeks ago. She had 6 seizures in under 12 hours and They were not succeding in controlling the seizures at the hospital which were no longer febrile. Her seizures only lasted under 1 minute.We were at the hospital for 9 days. After the first 3 days, her seizures were lasting about 10 seconds or less. All her seizures but one have occurred while she's asleep only. She was put on Depakene and Keppra and has not had a seizure in 3 days thanks to God. She has not talked since then, or smiled or jumped or been herself. They send the test out for Dravet's and are hoping it comes back negative, just like every other test they have done. We've been home for 2 days and I can see she's improving a little each day and we remain positive that she will continue to improve. I have also read that Dravet's begins in the first year of life and all the stories I have read about it mention the child starting with seizures at 5 months or 7 months...not one that I researched did the child begin after the first year. I have alot of faith that my daughter will make a full recovery, just keep praying and believing...doctors dont know everything and are wrong alot of the time. Hope we keep in touch as our stories are very similar and we are going through the same thing.

Re: intractable seizures in 2 year old

Hi .Our stories are similar. I am wondering how your daughter is doing? The doctor's have not confirmed dravet syndrome and the cause of my son' s seizures are unknown to date. He still has seizures only in his sleep now every 4-5 days. He is on valproic acid (generic for depakote). Doctors want to add lamictal to this, but one medicine is very difficult to administer that I cannot imagine two. the side effects from lamictal and depakote together can be scary so we are in limbo right now and not sure what the next step will be. Alex does appear to have developmental delays in his speech and attention span. He is now three and just starting to say single words on his own without  someone helping him.

intractable seizures in 2 year old

Hi. My son was diagnosed with Dravet Syndrome November 2008. Prior to this diagnosis we were told that all of his seizures up to that point were febrile. He had his first seizure 2 days before he turned 4 months old. We were told that he had an ear infection and that this was a common occurence in small children. We were then sent home. He began having seizures every four to six weeks. We were in and out of the hospitals for months on end. They ran test after test, but could not find anything wrong with him. His EEG's and MRI came back normal. We were told it was something that he would outgrow. In November 2008 he was put into the hospital to have his adnoids removed and his tonsils reduced. This was ordered by his first neurologist since these were items that we were told that were contributing to his fevers and related seizures. After the surgery he had two seizures. The last one being so severe they had to end up giving him a very large dose of adavan. He ended up having to be life flighted to Texas Children's Hospital. Once there the head of neurology told us that he had Dravet Syndrome. We were told that he would never outgrow it, contradicting everything we had been told for the past year. We were devastated. Prior to this he was on phenobarbital and keppra. Neither medicine had done anything to help his seizures. Before we left the hospital he was put on zonegran, which stopped the convulsive seizures. He only had one the next year, and only 2 since being put on it. Unfortunately he had head drop attacks daily. These are harder to control with medicines. And so far nothing has helped them. Three weeks ago he was put on another medicine named klonopin, and we began weining him off of the phenobarbital. Then he is going to be weined off of the keppra. If this does not help with the head drops they have mentioned doing surgery and inserting the vagus nerve stimulator. This is said to greatly improve these head drop seizures in most children. Right not we are just praying that the medicine will work, but so far no luck. He has had delays in his speech, but that is getting better since we began taking him off of the phenobarb. He is now repeating more things and talking more. I am scared about what is going to happen from here on out. I am learning more as we go, but there is not much information out there about this syndrome. And most of the information is very frightening. We just live day by day, some days better than others. He has to wear protective head gear whenever he gets down on the floor anywhere that does not have thick carpet to keep him from getting hurt worse from the head drop attacks. Should you ever need to know where to find a good helmet they are called thudguards. It is not a bicycle helmet. This grows with them. I would be glad to try to answer any questions that you may have. I wish that I had someone to talk to about all of this, and someone who has a child older than mine to see how thing progress when they get older. I hope some of this helps.

Re: intractable seizures in 2 year old

I just wanted to update Alex's condition since it has been a while since I posted a comment. Back in 4/09 Alex started to take depakote and it totally isolated his seizures to waking up in the morning. He is now three years old and one year on depakote has maintained his seizures the same way. He usually has 2 seizures a week when he wakes up. Docotors have ruled out Dravet syndrome and are not sure what is causing his seizures. We are now starting lamictal in addition to the depakote to see if we can eliminate the 8 seizures a month he still has. The depakote has negative side effects for Alex (hyper, unfocused, agitated, agressive) but it is the only medicine that has helped.  I am hoping everyone that has responded to this site is doing better and things have progessed in a positive way. 

Re: intractable seizures in 2 year old

My goodness this sounds familiar! I have twin boys who were 2 year old on April 9. They both suffer from a genetic disorder (SCN1A) and the doctor believes they have Dravet. For my son Miles we've tried Trileptal, keppra, clonazapam, depakote. Nothing's fully working and to date he's been developmentally normal. Idon't want to lose the sweet sweet boy I have grown to love and adore. We just met w/ the doctor and are going to ween him off the Keppra and eventually start him on Zongram (something like that). He's been ok on the depakote. Until recently. We are increasing it and I'm hoping he'll adjust and not be as wabbly on his feet.  It's the keppra that's had the bad side effects.

The last 2 "Big" seizures he's gone status and the diastat didn't work AT ALL!! He had to be put on a ventilator & we were in ICU (July 2 & August 1). Not sure how much mom can take of this!!  I feel like we're taking steps backwards rather than forwards. His seizures are getting worse and meds aren't working. At least before I didn't feel like he was fighting them off everyday, now I do.

My other son Jeremy is now doing ok. He went status last August and has since had seizures, but they've stopped w/ the diastat. Originally his seizures were worse. He's on Keppra and clonazapam, but is suffering from hyperactivity. We're trying to adjust when he takes the meds to alleviate this, but I'm not optimistic. Figures right? The meds that help w/ the seizures have too many side effects.

 Both boys had their first seizures at 6 months after the DPT immimuzation. I just read an article that they're finding children who suffer from Dravet seem to have seizures sooner right after the immunizations. It was the day after and 3 days later for my boys. I could go on and on. It's such an awful disease b/c so much is unknown and we as parents are stuck in the middle wanting what's best for our children.

Re: intractable seizures in 2 year old

My son is 4 and 1/2 years old and has intractable epilepsy. He apparently got a brain injury during my pregnancy with him that caused it. He started Keppra at 1yrs old for his absent seizures( eyes vibrating/rolling back a bit). When her turned 3 he started having versive seizures (eye deviated to the right and was he is unresponsive). These only occured when he took a nap...not every day. He started having them once a month if not more often. The Diastat rectal injections only worked for about 6 months after those started. He was put on Valproic Acid when he turned 3 in addition to the Keppra. Days before his 4th birthday he had a 9hr versize seizure. Dilatin was added to his daily medications. Unfortunantly my son suffers from other medical problems unrelated to the epilepsy. This past July Holden had surgery for a VNS...Vagusl nerve stimulator. This is the next step we had to take. It's called the "pacemaker" for the brain. It's still too early to see the results of it. He had a 5hr seizure last week....Ativan is the only medication that seems to stop the seizures in its tracts. But that's not something we get to have at home. It takes Holden about 6 weeks to fully adjust to his new depakote levels and new medication. We just greatly increased the valproic acid and Dilatin amounts. Our hope with the VNS is that Holden will be able to go off some of his medication. The Dilatin is causing his teeth to be discolored and the valproic acid could be causing his low white blood cell count. Just thought I'd share my story....it's very hard I know. He's had 3 helicopter rides in the last 6 months for his medical problems. Holden is learning delayed and is at a 18month old speech level, if not less. He's also only had 1 morning and 1 night seizure...all other occur during his nap time and he wakes up. Some times it seems that he knows it's going to happen and will come and get me. How are you handling everything? I am actually going to a seminar Thursday evening in Rockville MD regarding Epilepsy and when medication isn't enough. Also if your son is learning/speech delayed, some of the aggression can also be from frustration of not being able to communicate. I have an 18 month old daughter as well....and my son gets a little angry and aggressive towards her b/c he can't communitcate well enough when she's upsetting him. Drowsiness is Holden's medication's biggest side effect. He's been sleeping a lot during his pre-K class...but he'll adjust.