worried mum with 6 year old son recently diagnosed with epilepsy

[Mum in London]

Our nearly 6 year old son has recently been diagnosed with generalised epilepsy (much to our surprise as he has never had a fit). We had only taken him to a neurologist last November as his school wanted to rule out any physical issues as he was having trouble keeping up at school. The 24 hour EEG showed he is having relatively frequent seizures lasting 2 to 7 seconds: petits mals with little or no physical manifestation. We have subsequently put him on Epilim and he is now on a 600mg does once a day. He only started Epilim in March so it is early days. However, he is still complaining that he is dizzy (we think this may be when he is having a seizure but are not 100% sure) and to this we now have headaches and tummy aches. He has also started to put on weight (already visibly noticeable) and is asking for seconds of everything. On top of all this he is also starting to behave badly. It's really hard to know whether the drug is working, given it's difficult to tell whether he is still having the seizures or not.

I was wondering whether anyone else has been in a similar situation and any advice they might have.

We are due to see the neurologist again but not until mid July.

[Nakamova]

Hi Mum in London, welcome to CWE!

It's very possible that the Epilim is responsible for the side effects your son is experiencing: Here are some of the listed Epilim side effects:

Constipation; diarrhea; dizziness; drowsiness; headache; increased or decreased appetite; mild hair loss; nausea; sore throat; stomach pain or upset; trouble sleeping; vomiting; weakness; weight gain.

If the Epilim isn't controlling his seizures, or if the side effects outweigh the benefits of seizure control, then you should discuss trying another med or treatment approach with his neurologist. In the meantime you might want to ask his teachers if they saw any improvement after your son started on the Epilim. And try and keep a journal yourself where you note things like your son's sleeping habits and alertness --- eventually you may be able to get a sense of when something is "off."

You might want to ask the neurologist about trying a dietary approach. Absence seizures in particular have been shown to respond to a low-carb high fat diet such as the Modified Atkins Diet. More info about that here: http://www.atkinsforseizures.com/

Best,
Nakamova

[Mum in London]

HUGE thank you! I will definitely check out the low carb diet option.
My gut feel is that the side effects are outweighing the benefits at the moment but I don't know whether we need to give it more time and they will settle down (is this possible?), also I am not sure that we can just take him off the drug immediately (i am assuming not). There is a possibility that he is dyslexic / dypraxic so trying to work out what is going on is really hard.
Do you know if it is common not to be sure whether the seizures are happening or not?
Apologies in advance for all the questions!

[Nakamova]

Yes, he would need to be tapered off of the Epilim slowly -- probably best to discuss with his neurologist. Sometimes the effects can change over time, but since he's been on it since March, you should have a pretty good sense of how it is (or isn't) working working by now.

Don't worry about not being sure about the seizures -- absences can be very hard to recognize especially because they are so brief. But it would be great if you noticed an improvement in his focus or attention -- an absence of absences, so to speak.

One other approach to consider, especially if there may be dyslexia, is Neurofeedback. It has its drawbacks -- it can be tough to find practitioners, it's rarely covered by insurance, and you need many sessions (at least 20) before seeing results. But if it works, the benefits are lasting, even after the sessions are over (unlike with meds), and there are no real side effects. You can read more about it here: EEG Neurofeedback

[Mum in London]

super helpful thank you so much, i will read up on Neurofeedback
thank you!

[donnajane]

Hi, and welcome. I am sure you will learn a lot from everyone as I have. I have an almost 18month old who has quite a few different events, won't really call them seizures as no one knows what they are. We have had several different opinions but he is now on meds. His EEG shows a slowing at the back right of his brain and his eyes roll when the lights flash but they his EEG stayed basically normal. For us having videod his events has been a great help. I know we often miss events as his meds seem to be controlling a lot the events but not really the ones where he vagues out. Usually his first sign that "something" has happened is he suddenly gets very tired after being basically a normal toddler, its like someone just switched a switch.
Good luck with it all!
Donnajane

[Fedup]

Mum in London

I am sure this is stressfull timed for you, Epilim from my point of view is good at least for me but it does increese your appetite this is one side effect, it can also cause mood swings. I was on Epilim for a while but I talked with the doctors and came off if, I would talk with my doctors again and go a futher into the side effects while telling them what has been happening.

[Flynn's mum]

Hi.
My six year old son also has epilepsy. We have no experience with Epilim but I will tell you what our experience has been in case that's at all useful. My son had tonic clonic seizures initially and was prescribed Tegretol. Soon we started noticing what we later learned were absence seizures. The neurologist reckoned he was having 100 or more each day while on Tegretol. Apparently Tegretol increases the frequency of absence seizures so he was probably having them before but infrequently and, as you say, they can be difficult to recognise. He was switched onto Levetiracetam and within 4 weeks, all seizures stopped.

The way the neurologist confirmed that what we were seeing was absence seizures and also the way he confirmed that they are now well controlled is a simple trick you can try at home: Have your son sit comfortably on a chair he can lean back in and where he will not topple off. Hold a tissue up, dangling it about 12 inches in front of his face. Ask him to blow on it and to keep blowing on it to never let it hang down. (This induces very mild hyperventilation which is quite safe). If he is prone to absence seizures and they are not controlled by his meds, you should see a seizure quite quickly. It will look like a dopey moment, during which he will stop blowing, h hold is eyes might droop or roll slightly upwards or just stare blankly. He might fidget slightly, lick his lips or nod his head but he will not respond to you for anywhere from 2 to 10 seconds.

Absence seizures, while not dangerous in themselves, need to be prevented. As we were told "If we simply allow the absence seizures to continue, he will fail at school and drop out as early as possible, his personal relationships will suffer, he will never be able to get a driver's licence, and may not be able to down a job. He will have very low self esteem as a result of all this and will face a higher probability of depression and even suicide."

It is so stressful having your child go through this and my heart goes out to you because I know that as a mum, you never stop trying to understand why this is happening or trying to fix it. As they say here in New Zealand, kia kaha - stay strong.