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uncontrolled drop seizures

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

Comments

Re: uncontrolled drop seizures

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 

 

 

Re: uncontrolled drop seizures

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.

Re: uncontrolled drop seizures

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

Re: uncontrolled drop seizures

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.   

Re: uncontrolled drop seizures

My 3yr old started having Grand Mal back in Sept. He is on Clonazapam 3x a day Felbatol 3x a day and Kepra

2x a day and still having drops and droopy eyes and lathargic. We started the Ketogenic Diet last week and have seen a dramatic improvement. More energy and very few drops. Just a couple a day down from 50-60 a day.

Re: uncontrolled drop seizures

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!!

Re: uncontrolled drop seizures

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.

Re: uncontrolled drop seizures

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.

Re: uncontrolled drop seizures

My son started having drop seizures for the last 2 1/2 months too, averagely about 15 times per day. At first he only had a few drop seizures a day, but while the doctor was waiting for the EEG result without giving him anti-seizure medication, he had a grand-mal seizure, so they put him on Keppra 1000mg per day, but it didn't control his drop seizures. Next, they put him on Trileptal 600 mg a day on top of the Keppra, but it didn't control the drop seizures as well (still 15 drop seizures per day, although the duration seems shorter).  (His EEG result also showed slow diffused waveform with discharged spikes, which suggested Doose syndrome). Anyway, I noticed that walking really help him a lot (Once he had a drop seizure, I immediately took him for an hour walk and he stop having another drop seizure for about an hour). When he first wake up in the morning, he has more drop seizures. So now, when he first wake up, I take him for an hour walk around the house (while feeding him the Keppra & Trileptal). That seems to control his seizures.  With enough walking throughout the day (i.e 3 times a day, 1 hour each time), the last week he didn't not have a drop seizure. Yesterday it's raining so I didn't take him for a morning walk & he had about 4 drop seizures. So, I am working back up on improving him again. This time I do hope walking helps me please! :)

Re: uncontrolled drop seizures

hi how are you getting on?

my daughter is 8 yrs old, before she was diagnosed she was averaging between 40 and 60 drops a day. she is now on a cocktail of epilim, tegretol and clobozam and has a helmet. she currantly has between 10-15 drops on good day and 15-25 on bad. she is also aggressive and very tired. i have just been told today that she is going to have a corpus callosotomy op on june 19th this year. this surgery is to seperate the 2 halves of her brain to stop the seizure message crossing the brain therefore reducing the drop attacks by 80-90%.

i pray that this will help,i am a single mum with another child too.

i hope all is working out for you,

nikki

Re: uncontrolled drop seizures

My son is 17 and having drop seizures which have graduated from every other type of seizure. I have been told that there is no medication that can control drop seizures which is quite a problem as he is 6 foot 7 and 230 lbs - so when he falls he falls really hard. Even though I have been told to put a helmut on him I am refusing. I just can't do that to a 17 year old sports jock kid. We just went thru 2 horrific years with depression and suicide and I can't now tell him to put on a helmut as it would take us right back to that horrible time two years ago.  I want to tell anyone out there reading this to please read everything there is to read about Keppra before putting their child on it. It is commonly known as "keppra's rage" which the doctor will not tell you. (look it up on the net - keppras rage) It induces depression, severe physical aggression, psychotic behavior, suicidal tendancies - changes personality totally. It was the worst time in this whole horrible epilepsy ride - but luckily after two weeks off it he turned back into the gently kind giant that he had always been. Avoid it at any cost.  He told me he used to lie there at night thinking about stabbing his brothers....it was a nightmare.

We have just found out that he is never allowed to drive any type of vehicle, ever. He cannot scuba dive which rules out his lifelong passion to be a Marine Biologist. He cannot be in any position of control over anything electrical. He is very limited in his life choices now. It seems to just get worse - the whole picture - every year.

Re: uncontrolled drop seizures

cccougar, my heart goes out to you and I am sincerely praying for you and your son. My son and I went through some similiar experience with the helmet and psychological side effects from the drugs.

I am happy to report that my son is seizure free since April 2009 and medicine free since September 2009.  I started him on the Modified Atkins for Seizures Diet in February 2009.  After about two months the diet began to work for him.  Please research this diet.  www.atkinsforseizures.com It's been a long and difficult journey but we are doing well.  On our next visit to our epilieptologist in March 2010 we will discuss weaning of the diet.

Re: uncontrolled drop seizures

hi how are you getting on?

my daughter is 8 yrs old, before she was diagnosed she was averaging between 40 and 60 drops a day. she is now on a cocktail of epilim, tegretol and clobozam and has a helmet. she currantly has between 10-15 drops on good day and 15-25 on bad. she is also aggressive and very tired. i have just been told today that she is going to have a corpus callosotomy op on june 19th this year. this surgery is to seperate the 2 halves of her brain to stop the seizure message crossing the brain therefore reducing the drop attacks by 80-90%.

i pray that this will help,i am a single mum with another child too.

i hope all is working out for you,

nikki

Re: uncontrolled drop seizures

My son has uncountable drop attacks daily right now and has tried 6 meds, currently on three.  We just started the modified atkins diet for seizures while waiting to get on the ketogenic diet.  Have you heard of either of these?  It's worth researching.  It's not an easy diet, but it really has worked for lot's of kids with uncontrollable seizures. and I'm hoping my son will be one of them.

Re: uncontrolled drop seizures

Ha that's funny...you've already had success with the Modified Atkins diet...awesome! Guess I should have checked that first before commenting. :)