Help with 7 year old son, anger after coming off Sodium Valporate (Epilepsy)

[piemagic]

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

[gillyhan68]

Hi this does seem a little bit too coincidental, my daughter was knocked over by a car and had a head injury but our neurologist says it wasn’t that but all her seizures stem from then. Hope u get some answers soon . X

[AmyBadd]

Oh David, what a horrible situation. I am so glad to hear your son has grown out of his seizures but so sorry that coming off his medication has led to this.

I actually also take sodium valproate and as far as I was aware it doesn’t have many side effects compared to other AEDs in terms of the mental health and learning side of things. Personally another one I tried messed with my personality whereas this one didn’t and I have completed 3 University degrees including a PhD while taking it. However, I only started taking it aged 21, and perhaps as you say it is causing a problem as he has been taking his it through so much of his vital development.

I would be interested to hear what other people have to say if they have experience of young children on this medication and I hope it passes for your son quickly, or you all find a way to deal with it.

Amy xx

[zippytiptoes]

David, you have just recounted almost word for word the experiences of me and my husband in relation to our daughter. She has had absences since the age of 2.5 and is now 8 and has been on every medication under the Sun. She’s currently on no meds’ as we couldn’t cope with the extremities of behaviour. It literally took over our life. We were also told that it could not be related to meds. We lived on eggshells in relation to her behaviour and were told it was likely she’d grow out of it. She also controlled these outbursts to some degree. We are now stuck with no consultant. Long story, but we asked for a second opinion which didn’t work out and I don’t want to go back to initial neurologist as he really annoyed us, making us feel like we just couldn’t cope and were being over dramatic like it was all very unusual! It’s no help with your circumstances but I understand how you feel to be at the end of your tether, to be lost for answers and to be at a loss with how to best support your child. We are currently trying to find a new consultant who is sympathetic to the anger issues. It seems they all underestimate and downgrade the emotional/anger aspects which seem more and more real to me. I don’t know where in the country you are, but happy to chat further if it helps at all. Feel free to PM me. I’m sure my husband would really empathise. I really understand your sense of disbelief and although I can’t offer you any change in circumstances, I can tell you you are not alone. You are not the only parents going through this and it’s not about not being able to cope. I really hope you find a way to move forward with this very frustrating situation soon and have every sympathy with you, your wife and your son, who I know will be at loggerheads through no fault of your own. Best wishes.

[mamachick2017]

I personally hate sodium valporate(epilim the other name used) it had the effect of making mine and my lil brothers mood swings and essentially tempers both much worse. I was 12 when I went on it tablet form very high dose didn't work my brother 4. I've gone through loads of meds now being 33 but non had the effect that that drug did. Get them to try something else lacosamide is good I'm grand mal petite mal list goes on but it's a good. I'm on about 6 different meds but they need weeding out I prefer the meds to the seizure after seizure.

[303127 in reply to mamachick2017]

I wonder whether the anger outbursts are an 'aura' of an impending siezure,not necessarily immediately.We all suffer those differently and I think the diagnosis of A.D.H.D is lazy and your neurologist should help you rather than label you.If you are having no support at all maybe you could ask to see another neurologist.I have changes in behaviour,suffering from very low mood to functionally happy.As an 8 year old she may be suffering anger at an inability to find the words to express herself and can only do so with angry outbursts.It is such a difficult and awful experience for you and one thing I am certain of is that the right person to help you is out there and hopefully find the appropriate help.There are units for young people and the family can attend some of these.I hope some of this advice resonates with you and wish you so much love in your quest for help.Ashxxx