Hi all, I'm new here and thanks for reading this.
I'm really concerned for my son's behaviour since coming off his epilepsy medication and wondered if anyone else had experienced similar.
To give you a bit of background, he had his first seizure when he was just 1 and at the age of 2 he was diagnosed with Epilepsy and put on Sodium Valporate. There was a short period of seizures while the doctor was still increasing the dosage to find an amount that worked. I'm pleased to say that the Sodium Valporate really took control and apart from a few absence seizures he was seizure free.
At the age of 6, he was on 8.6ml twice a day and the Pediatric Doctor in charge of his case recommended we start weaning him off as he had been seizure free for such a long time. (it was explained to us early on that some children grow out of it around the age of 5 so we were hopeful).
And here is where the problems started.
We were only reducing his dose by 0.5ml a week, so week 1 was 0.5 less in the morning and week 2 was 0.5 less in the evening dose and so on, therefore it took a long time to get down to 0 dose.
During the weaning period, my son had a couple of outbursts that were out of character, it concerned us at the time as he seemed so much more angry than I had ever seen him before and it was over something so silly like telling him it was time for bed. Like most children, he always wants to stay up later but in 7 years we had never had an argument of this scale, we probably put it down to him being tired etc (as you do).
His final dose of Sodium Valporate was on Sept 1st this year and since then his anger and mood changes have become so extreme, it started in mid October, again with a couple of outbursts and it is now becoming more and more frequent and unfortunately more and more aggressive.
It's got to the point now where I can tell when it's going to happen, his behaviour becomes agitated and he snaps at me when I ask him a simple question. Last weekend he had a rage of anger for 4 hours where he was telling me he wishes I was dead, he hates me, he is kicking and punching me and his mother continuously. Same again on Monday night and same again last night.
I put in an emergency call to the paediatric GP in charge of his case and she finally rang me back 3 days later, we spoke for about 2 mins and she said point blank there is no relation between his change in behaviour and him coming off the medication.
She did make a valid point that if it was related then he would have these fits of rage everywhere, like at school and not just at home, with which I completely, however, im not suggesting that this is a mental health issue like ADHD or Autism, I can see when he is having his outburst that he is in control to a degree, he will go to hit me and think twice about it and pull away at the last minute.
As a side note, we were advised by the same doctor that his learning would not be affected by his medication when we raised concerns early on that he was behind in everything he did, however, we realised that all children learn at different rates and just accepted that he was a slow developer, since coming off the medication he has greatly improved at school and his ability to retain information is noticeable, coincidence?
I am really struggling to accept that coming off his medication and his extreme change in behaviour aren't related. The doctor is looking at it as a withdrawal symptom and is saying he came off at such a slow rate that it's impossible it could be related.
I have no medical training what so ever but I know my own son and how can a little boy go from a lovely caring child (of course we had arguments and he threw tantrums, just like every other kid does) to this angry person that punches his own mother, says he wishes his own dad was dead and literally screams so loud for 4 hours that his entire face swells up and only gives up when he is physically exhausted. I honestly don't know how he hasnt given himself a seizure.
As i understand it, Sodium Valporate is a mood stabiliser so is it not at all possible that his moods/emotions have been suppressed since the age of 2 and now at 7 and a half he is having to deal with emotions and moods that would have previously been controlled by medication?? Alternatively, could this anger be an issue that has been with him from day 1 but has been masked by the medication??
I'm at a loss of what to do, it seems like he only does this to the people that care about him, mum, dad, nanna's etc.
Has anyone else had an experience like this?
Thanks in advance
David
