it breaks our hearts - Epilepsy Message Board

confused mum · 10-06-2005, 07:15 AM

my son who is nearly three had 2 febrile convulsions at 14 months old, we was then informed that it had turned into epilepsy at about 18 months old . Since then he has been having seizures every two weeks but in clusters,we had him refered to Great Ormond Street for diffcult to control seizures he is now on 200mg a day lamical, we do believe that this makes him very violent and agressive , he is still havein seizures on the dose of mdeication that he is on and had a 18 hoir eeg to which came back as clear. We still feel that we r so in th dark in the whole situation ! is it the medication that makes hinm violent and why is his hearing so senstivitive it s so heart breaking to see him ging through this every two weeks and now his development is delayed causing there to be language delays is so frustrating . My son also had adhd and we feel that this is getting worse please can someone help us with out questions !!!!!

very scared mum xx

niecsey · 10-06-2005, 08:11 AM

Hi l understand how you feel lm demented at the moment my girl is going to start meds l dont know much but l think lm 'mourning' for my little girl lm scared what she might be changed into! I have to go to school soon to pick her up and if l dont burst out crying at the school gates it will be a miracle! Im so scared too l mean it aint a broken leg thats been treated its the brain thats been tampered with!!!! Ive had a panic attack today for the first time in years l feel so down and low lm terrified my heart goes out to you. Im sorry l cant help you in any other way as lm new to this l dont think i will ever be able to cope with this....... take care thinking of you x niecsey

tkdmom96 · 10-06-2005, 10:18 AM

Hello,

Our daughter, who is 17, is on Lamictal now for 2 years. She takes 400mg per day. We have not seen any violent type behavior. In fact, this med has had the least affect on her personality and other issues out of the 7 meds and combos she has been on over the last 16 1/2 years.

However, AEDs have a different affect on everyone. Katie has tolerated meds other people have had great difficulty with. The reason we had to switch or add was because they just weren't controlling her seizures. She has Complex Partial due to a febrile seizure at the age of 8 months that caused damage to the hippocampus and left temporal lobe. She had surgery in June 2004 after extensive testing and has been seizure free since. She will be on meds until June 2006, at which time we might try going off...we'll see.

As far as behavior is concerned, it can also be part of the seizures themselves. Depending on where they originate from and what parts of the brain get further engaged during a seizure. Have they done an EEG to see where the seizures may be coming from? Have they done an MRI? The seizures could possibly be affecting the right temporal lobe, which has to do with personality and behavior. I would suggest doing some research so you become familiar with where things are located in the brain. I'm not a doc or nurse, just a mom who has learned a lot over the years.

Keep a notebook on your son's behavior during a seizure. Believe it or not, even the way the eyes shift or one side of the body moving and not the other makes a difference. With Katie, her eyes always shifted to the right and her head turned to the right...that tipped the Epi to look closer at the left side of the brain. You never know what might be important some day. I would have never realized the journals I kept for over 15 years would prove to be SO helpful. They made copies of both journals that were used in her diagnosis, which was "Mesial Temporal Sclerosis".

You need to try to take things one day at a time...sure, it was difficult to deal with in the beginning. And I'm not saying it will be perfect every day. Dealing with school, friends, sleep overs, swimming, driving, employment, college, marriage...etc. We have been through it all...well, except for college (which we are preparing for right now) and marriage.

Keep it in today...hug him and love him and do the best you can as his parent...and remember one thing...

YOU ARE YOUR CHILD'S ADVOCATE!

The doctors work for you...if something doesn't seem right or sound right make your voice heard! No question is EVER too silly. I have challenged our docs over the years (fortunately we only had 3 neuro/Epi's over 16 years) and that IS MY JOB. I do it carefully and yes, I am wrong sometimes. But if you don't question, you can lose control of the situation and may have regrets over decisions.

All my best as you start on this journey...try to keep it in today...
Vicki

tkdmom96 · 10-06-2005, 10:35 AM

Hi, I reread your post and saw they did an 18 hour EEG. Maybe they need to do a longer one (5-7 days), or be put on stand by, so you can go in when he is clustering.

Many EEGs come out "clean". Katie had MANY EEGs over the years that didn't show activity, but that obviously wasn't the case. It just depends on if there is activity going on when that particular EEG is being done.

Katie did have sleep deprived EEGs that brought out more activity on the machine.

All my best,
Vicki

niecsey · 10-06-2005, 01:19 PM

Hi my daughters were picked up on a sleep deprivation test not on any others tdkmom could you please tell me what the left temporal lobe is for? (l noticed you knew what the right one was for cheers