is there a link between epilepsy and behaviour problems?(update post 9)

[beckyand3littlemonsters]

My dd caitlin has been diagnosed with benign rolandic epilepsy and her behaviour has been getting gradually worse since she has been on the medication for it today she stole from 2 shops, she keeps running off and laughing, steeling flowers from peoples gardens, she has smashed 2 toy boxes in the last week,she jumps all over the furniture and on me, swings on the curtains, keeps her brother and sister awake at night by talking, singing turning the light on and off and throwing toys, she also some sensory issues with clothes especially socks and tights she says they hurt and will scream.
A lot of these behaviours have been present for a while now (a few months ago she pulled off the stair banister , has on more than one occasion flooded the bathroom, pored shampoo, bodywash etc down the sink and toilet) but it is deffinatley getting worse since she has been on the medication.

[beckyand3littlemonsters]

Anyone?

[Aridel]

I might mention it to her doc - the behaviors getting worse could be related to the meds she is on. (I have no personal experience with epilepsy FYI) You can ask if you can try a lower dose/different medication if needed.

[beckyand3littlemonsters]

Thanks for your reply i tried phoning the clinic on tuesday but the dr wasn't there so the receptionist phoned him at the hospital and phoned me back to say he would phone me either later that day or the next day by friday i'd had no phone call so tried phoning both the hospital and clinic but got no answer, i've left a message on the clinics answer machine and will try phoning again monday.
her behaviour is deffenately getting worse and i'm not the only one who is noticing it.

[Annie Mac]

What is she on? Considering drugs that treat epilepsy must have an effect on the brain, I don't think it's a huge stretch to think they might affect behaviour. In my experience, they're more likely to make you into a zombie than anything else, but those might be just the older epilepsy drugs. God knows what they've come up with recently.

[beckyand3littlemonsters]

Originally Posted by Annie Mac

What is she on? Considering drugs that treat epilepsy must have an effect on the brain, I don't think it's a huge stretch to think they might affect behaviour. In my experience, they're more likely to make you into a zombie than anything else, but those might be just the older epilepsy drugs. God knows what they've come up with recently.

She is on sodium valproate (epilim liquid) a friend of mines son took it when he was younger and he had the opposite to caitlin he became very quiet and withdrawn but caitlin is deffenatly not quiet she's just so hyper all the time and it takes ages for her to go to sleep at night.

[Aridel]

Do you think some of the behaviors are related to her lack of sleep? I know when the kids (or me lol) miss sleep, behavior tanks. Of course, if getting to sleep used to be easier for her that could also be related to either the seizures or the meds. I hope her doc has some answers for you!

[beckyand3littlemonsters]

her all round behaviour including night time has gotten worse since she has been on the meds mind you she always been very "spirited" but she is gradually getting worse and worse since she started taking the epilepsy meds.
we were at my dads the other week for a bbq and he said he thought she was getting worse and that was one of her relatively "good" days. she has always had good and bad days but now it's more of the latter.

[beckyand3littlemonsters]

The dr phoned back yesterday and has said that it does sound like the meds are effecting her behaviour so he is going prescribe her something else and i have to gradually wean her off this one going down by 1ml every 3 days till she's off it completely and then start the next medicine.
I'm not sure if it's coincidence but she had 4 ml (instead of 5) last night, this morning and tonight and she was a lot quicker going to sleep she was asleep before 8pm instead of being still wide awake at 10-11pm like she has been the last few weeks.

[Annie Mac]

Glad to hear you are getting this looked at quickly. It can take a while to get the proper med dosage & type to both control the seizures and have at least manageable side effects.

[Aridel]

It's great that your doc was so responsive. I hope the improved sleep and behavior continues and that the next med works for you!

[beckyand3littlemonsters]

She's been a bit giddy today but not as bad as she had been though she did try running out of the shop with a bar of chocolate, bedtime not as good as last night but still a lot better than it has been, though that could be because i've starting sending her up earlier than chloe and cameron.
I'll keep you posted how she gets on and i'll just keep my fingers crossed that she doesn't have any seizures while she is being weaned off this medicine to try the next.

[MindfulBirth]

We have been dealing with behavioural issues since the day my daughter had her first tonic-clonic. Some meds make it worse, some make it better. I don't know what percentage of behavior issues is due to meds, though, and what percent is due to the seizures, or knowing that she is "different" from her peers, or the many many doctor/hospital visits.

I'm glad you got ahold of the doc and that meds are being changed. I hope this is exactly the right medication for you daughter.

[dbsam]

I also believe my daughter's meds, not the seizures, have negatively affected my daughter's behavior - there were subtle changes; nothing too serious but nothing positve. She's been on Depakote three years and we've have three neurologists tell us the behavior 'issues' are not caused by the drug. We started weaning her off the meds in April and her behavior, mood, memory, basically everything has been steadily improving. She's recently had a neuro phsych eval (I wanted to wait until she was off the meds but they said it wouldn't make a difference. But it looks like she wouldn't have even needed the eval once she is off her meds. )

I hope you find a drug that works for your daughter. I'm glad you have a neuro who is willing to work with you.

[beckyand3littlemonsters]

Caitlin's behaviour did also get worse after her seizures but got a lot worse with meds especially once the dose was increased from 3-5ml, now she is being weaned off this medicine to go on to another i am worried about her having another seizure especially as the school won't give her the meds she has to stop them.
she'll be going down to 2ml tonight then 1ml in another 3 days then 3 days after that 0, i'll have to phone the dr.'s surgery tomorrow to see if they have her new prescription and just hope she' ok with this new medicine.

[dbsam]

Originally Posted by beckyand3littlemonsters

Caitlin's behaviour did also get worse after her seizures but got a lot worse with meds especially once the dose was increased from 3-5ml, now she is being weaned off this medicine to go on to another i am worried about her having another seizure especially as the school won't give her the meds she has to stop them.
she'll be going down to 2ml tonight then 1ml in another 3 days then 3 days after that 0, i'll have to phone the dr.'s surgery tomorrow to see if they have her new prescription and just hope she' ok with this new medicine.

I'm guessing the seizures affected my daughter's behavior in some way too. But in our case, I felt much of it was the meds because she had seizures for over 2 years prior to medication without the behavior issues - although she was always quirky. (Our ped kept telling me she wasn't seizing so I convinced myself he was right until age three when I finally demanded an EEG.)

I was excited and frightened about weaning my daughter off her meds. Unlike your situation (your drug allows for a quick weaning and you are switching drugs whereas we are hoping to take her off the drugs completely) we lower the dose every two months with the entire process taking over six months. I've been sleeping with my daughter because I am afraid the weaning will result in a seizure during the night.

Why won't her school administer the drugs she needs?

[beckyand3littlemonsters]

Originally Posted by dbsam

Why won't her school administer the drugs she needs?

Because the side effect of the medicine is that it slows down breathing the school union (think that was it)doesn't advice giving it and won't back any teacher should something go wrong.
Worse thing is no one felt the need to tell me this, i had to keep going to the office and the phoning the school and finally i got to speak to someone on friday morning.
I'm going to be homeschooling in september and they break up for the summer holidays in a few weeks so at least she's not going to be in the school much longer and i can stop worrying at least about her having a seizure at school and not getting the meds she needs.

[beckyand3littlemonsters]

actually something i forgot to mention and it's something that especially bugged me that the meeting to decide wether or not the medication would be administered was put back because of offstead coming to the school, they care moor about league tables than the health of one of the students.