uncontrolled drop seizures
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UPDATED: Fri, 08/22/2008 - 9:54am
TSL1221
uncontrolled drop seizures
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My 4 1/2 year old son, Timothy, is having drop seizures... still. He has had 5-15 a day for the last week that we've been home (from a week long hospital stay due to tonic clonic seizures). Tim was recently diagnosed with secondary generalized seizures, atonic and myoclonic seizures on June 15, 2008 and was doing fine on Depakote and Topomax for about four weeks. We were weaning him off Depakote and he began having tonic clonic seizures again around the 4th week of weaning (end of July). (Tim had about 3 tonic clonics over a four day period and was rushed to emergency on the last one where we were admitted Aug. 3rd). He had 3 tc's at home then while in the ER he had 2 back to back. ER admitted him gave him atavan (sp?) to stop the back to backs and then gave him Dilantin while they increased the depakote and topomax. (but we did not stay on the dilantin). Doctors added Tranxene and then Keppra. Although he is not having the TC's , he is still having the Drops. Since we've been out of the hospital and having the drops the doctors have increased Keppra over this last week to the max dose and have asked me to try this until Monday to rule out Keppra and discuss then a new drug. So far today Tim has had 7 drops that I've seen and noted. I'm a single mom and I've missed 3-4 weeks of work and Tim is on 4 different meds and still dropping to the point I don't feel comfortable going back to work while these seizures seem so out of control. I'm glad there not the tc's, but wonder if it's just a matter of time. I've also noticed that he is gaining weight and irritable/angry and more aggressive and definitely more of a challenge to discipline. I'm worried about the affects on his brain and body from him having so many of the drops for a week now. Any advice from other concerned and/or experienced parents would be wonderful.
Timothy's Mom
By TSL1221 at Fri, 08/22/2008 - 9:49am | 66 views | 7 comments
Topic: Parent Group
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Recent Comments on this Discussion
This may not help you, but I have grand mal and myclonic seizures. I am 25 and I have had the myclonic seizures now for 7 years. What tends to help me other than my two medications (Keppra and Topamax); is to stay out of high stress situations, to not be around a lot of fluorescent lighting, or staring at anything for a long period of time. I also know due to the seizures that it will build up acid in the muscles and it makes it hard to sleep; which in retrospect will sometimes cause the myclonic seizures. Once you find the correct dosage for Timothy, he should start to feel better and the falling should decrease over a week to two weeks. In my case the violent falls changed to violent hiccups that warn me if grand mal seizure is about to happen.
Timothy's mom,
I have a 3 year old son and starting August 1st of this year our Epilepsy journey began. i swear you could have written "our story" except for some slighly different meds we have the EXACT same story.
I have counted 6-7 drops today, this after cutting open his chin twice because of drops, one resulting in 8 stitches the other butterfly bandages to seal where he just had stitches.
I guess all this is just trying to get the correct "medicine cocktail", but geez it is frustrating.
I am on the FMLA right now until I can trust myself sending him to his caregiver again.
To top things off our helmet is sittig in the doctors office, but doctor has not submitted paperwork to insurance yet!
Good Luck! and you're not alone!!
Frustrating to say the least!! With each new medicine I hope and pray for some progress but see very little then realize this is just one more drug we'll have to wean off of. I had no choice but to return to work so Tim is in daycare with the daycare staff following "seizure precautions". His teacher has been great and keeps him close and writes down any episodes for me and/or calls me. I call throughout the day though to check on him. They probably get frustrated with me calling so much, but it's constantly on my mind. Fornturnatley, the daycare is very close to my job so if he had a seizure over 5 minutes and I needed to I could get there in time to give him the diastat (because apparently they can't give it to him). My experience with the ambulance and the time it takes them to get here has not been very satisfactory. Another member on this site said to try the ketogenic diet, that it improved her child's seizures 95% and these types of seizures are very difficult to get under control. Thanks for writing and letting me know I am not alone. Feel free to contact me anytime.
Hi!
Being a husband and parent dealing with epilepsy it is not easy by any means. I don't have the experiences you are going through and can't really advise you. All I can say from reading your story is that your son is bound to be feeling aggitated and aggressive, it does impact on him what he is going through. You are right to think that you can't go back to work whilst he is still in this condition. You couldn't function anyway! You need some supportive help here to enable you to cope in everyway until this is sorted out to a reasonable level. Contact your GP, he may be able to help in the first instance
all the best
Thanks for your comment. I do need some support and have very minimal right now. This site seems to be helping though. My boyfriend has been a great support to both my children and myself and I thank God for him. Tim's Daddy (my ex-husband) cannot deal with this and actually told my son to not let the seizures take over him. He also made negative comments to me when I explained that Timothy must wear the special helmet the hospital ordered for us. Tim likes the helmet - we showed him all the football players with them on and even some wrestlers on TV and he loved it!!! I also warned Daddy to never say anything negative in front of Tim about the helmet!!! I'll say this...When things like this happen, you really find out just how much support you really have. People I thought would be here for me simply weren't and those few I never expected to help surprisingly helped. I've never felt more alone and helpless than when we were in the hospital...because I have two children and care about them both and need to take care of them both. My daughter ended up spending the night two nights with us at the hospital because I don't have alot of resources here (in New Orleans) after Katrina...all the children's family on their dad's side moved out of state and never returned and I'm not from here. All of my family out of state, about a 1,000 miles away. Thanks again.
Hey,
Know that you are not alone, my son at the age of 4 was having 100's of drops a day. He could do nothing but sit on the sofa and seize.
He is now 11 years old and is having an average of 15 drops/jerks/absences a day he has not had a tc for just over a year now.
My son also wore a helmet, but would only wear his bike helmet and was very proud of it, but when you have 5 inches of snow on the ground and the grocery clerk asks "did you bike here?" a dozen times.... it does get a bit boring.
depakote did wonders for a little while on my son, but Keppra did not... it made him very hyper to the point he would not rest in any form besides totally passing out.
Right now he is on lamictal and ethosuximide (zarontin) plus he has the VNS. Like I said before he is down to 15 a day and they are lightening quick.
Missy, mom to Kevin
10 Years old,
Doose or MAE Myoclonic Astatic Epilepsy
Thank you for sharing. Wow hundreds a day?! The most we've noticed in a day for Tim so far is 22 and I thought that was high. Tim has been on the sofa a lot lately too because although he wears the helmet (most of the time), his chin has taken a beating due to the sudden drops out of no where, his poor knees and arms too. :(
Did your son have any developmental issues after seizures and medicine? Although my son has hit all his developmental milestones, he talks slower now, but I don't know if it is from seizures or medicine. He does have a droopy loopy look in his eyes since being on the medicine though which I hate.