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My 8 year old son has epilepsy - its escalating and I am not coping

(21 Posts)
KnickersNotPanties Thu 13-Sep-12 10:48:08

He has been ill for 3 years. He was originally diagnosed with abdominal migraine and absence epilepsy - it took a year to get this diagnosis.

He started anti convulsants which sorted the migraine but not the absence seizures. They are getting worse - we are seeing the neuro on Tues after another EEG.

His epilepsy is unusual as it is triggered by reading. He is super bright - in a benchmark cognitive test when he was six we learned that he is gifted. I am so scared - what happens if he can't read? If we can't get the seizures under control? What does the future hold.

I am so damn scared for my beautiful boy. He wants to be a pilot or a pro rugby player - it breaks my heart that this may never happen.

.....

KnickersNotPanties Thu 13-Sep-12 11:18:29

Anybody? Please - I am scared and could really use an ear

KnickersNotPanties Thu 13-Sep-12 12:06:42

Ok then sad

Not a soul ...

FancyPuffin Thu 13-Sep-12 12:10:26

Can't offer any constructive advice I'm afraid, really sorry you are going through this though sad

My niece is under going investigation for absences, it's very scary.

I have good listening ear though smile

Does your ds try to read, which then brings on the seizures? Is he in school and are they being supportive?

FancyPuffin Thu 13-Sep-12 12:11:32

Has your ds tried books on cd? Sorry if that's a really stupid question blush

KnickersNotPanties Thu 13-Sep-12 12:14:55

The audio books is a fab idea. Than you!!!

He can read - very well in fact. He self taught before he started school. Its only in the past 6 months that readinG aloud started triggering seizures. He still reads to himself without triggering events.

Thanks for the ear. I am truly grateful.

KnickersNotPanties Thu 13-Sep-12 12:15:56

School are being great but it's almost impossible to escape reading aloud in class at that age .

KnickersNotPanties Thu 13-Sep-12 12:19:33

Fancy - what are your nieces symptoms. I am an old hand at the diagnostic route so might be able to offer some advice.

PiedWagtail Thu 13-Sep-12 12:24:10

Sorry to hear this. Have his eyes been tested? Could reading larger type help?? Can you make a list of qs for your nsuro appt, and ask them? Is your ds nervous about reading aloud? Sounds odd that reading to himself is fine but reading aloud causes seizures.

KnickersNotPanties Thu 13-Sep-12 12:31:49

Good question about his eyes - no we havent had them tested.

Yeah the reading is odd. We managed to video him tonight. I have sent this to the neuro so hopefully we will know more soon.

fatzak Thu 13-Sep-12 12:56:26

Hi Knickers. My 9 year od Ds has epilepsy too and I know how distressing it is when the medications aren't working. It does sound very unusual in that his seizures are triggered by reading although DS's can be triggered by maths!!

We've had a hell of a journey to get to where we are now. Just over two years ago he spent almost six months in hospital as things had got so bad. He went from being one of the brightest in his class, to drugged up to the eyeballs and having an absence every ten seconds. He was vacant more of the day than he was with us. Plus he was having four or five long tonic clonic seizures during the night when he would stop breathing. Ten medicatiosn failed, and I began to wonder if we would ever have our son back. He then started on the ketogenic diet and it has been miraculous for him. He hasn't had an absence since a month of starting the diet in May 2010 nor a tonic clonic since June 2010. He does still have myoclonic jerks, especially if we've not been 100% accurate with his food, but he is not on any medication and his last school report showed he is of expected standard in everything but maths! I'm not saying that you are at the stage of needing to consider the diet - there are so many medications out there and it just takes finding the one, at the right dose which suits your son. Someone once said to me that treating children with epilepsy is an art, not a science

Sorry, that was a ramble! Please message me if you want to chat offline smile

Yorky Thu 13-Sep-12 13:16:20

I know nothing about epilepsy but if you're having his eyes tested, I would ask the optician to consider colour screening while you're there. Not for colour blindness, but DH is dyslexic and has coloured lenses in his glasses which help him a lot.

Rooble Thu 13-Sep-12 13:54:44

Hi Knickers. This must have been a hideous time for you, I feel for you. I don't have a DC with epilepsy, but have had epilepsy myself since I was 10 (so for over 30 years now).
When I was first diagnosed (similarly seemed to take ages, lots of EEGs, trying different medications etc over a number of years) one thing the consultant said that really stuck in my head was that epilepsy is unusually diverse in how it can be triggered. He said he had one patient whose seizures were triggered by the sight of a certain type of ambulance, but not anything else. My epilepsy is photosensitive, but although I can tolerate strobe lights in night clubs (or could the last time I went to one) - which people generally assume you will be unable to do - I can't tolerate a slightly flickery TV. Or those bloody flashing light sticks they sell at children's theatre productions (grr. Major bugbear!!).
Is it possible that your DS is anxious about reading aloud? Anxiety/stress often makes people with epilepsy more likely to have a seizure. Or is it possible that he holds his book at a different angle than when he is reading to himself? (therefore maybe not looking at it full-on, or maybe changing the kind of light going into his eyes?).
I hope the neuro is able to help this week, but please don't expect everything to be resolved immediately. I understand that different medications affect different people differently, and although there is the basic science behind each drug that exists, there is no guarantee that any one/any combination will work for any individual, so there can be a fairly extended period of trial and error while the neuro works out with you what works fr your DS.
Have you ever looked at the elilepsy action website? There is a forum for people with epilepsy, and for parents of people with epilepsy which I found really helpful when I was pregnant. Glancing through the parents one it seemed very supportive to me. There is also tonnes of common-sense, really useful information about living with the condition.
Final point (sorry for v long post): epilepsy is a horrible thing to witness in a loved one, very scary and distressing. But it is possible to live a very full and fulfilling life even if you do have epilepsy.(I like to think I'm living proof of this!) Epilepsy in childhood can disappear later in life (though equally it may not) - please don't feel his future is written off because of what he's going through now.
Take care x
Ps may be wrong about this, but I have a feeling Ian Botham had some kind of epilepsy as a child - so sporting success not necessarily out of the question!

KnickersNotPanties Thu 13-Sep-12 22:11:37

Thank you. Thank you. I am in Australia. I will read your posts more carefully after the school run.

Such a relief to talk to people who understand.

KnickersNotPanties Wed 19-Sep-12 04:47:29

Sorry I haven't had a chance to come back and respond sooner.

To be honest, DS has had a bad week, we managed an emergency appoinment with his Neurologist yesterday and another EEG as his seizures were getting stronger and more frequent. We managed to film a few - which the neuro has reviewed along with the EEG results.

The Neuro was immensely reassuring. DS's meds have been increased, we'll review again in a week and then again a week after that. If the Epilim doesn't work at the max dose (we can go up two more times until we reach max dose), then we'll look at different meds. We are very lucky to be in the private system, so the doctor is available for me to liaise with (daily if necessary).

Fatzak - your comment about an art, not a science, was very similar to what the Neuro said to me. He cautioned us that we'll need to be patient and that it might take a while to get things right.

It's excruciating my beautiful clever boy go through this. Up until now, I have been second guessing the doctors, hoping it would go away (still following instructions and medicating though). I am usually such a pragmatic person and am surprised at myself for taking so long to come to terms with this...

butterfingerz Wed 19-Sep-12 10:56:54

The reading aloud as a trigger is not too unusual if you think about it, as when you read out loud you are completing two tasks - reading and speaking, implicating two different regions of the brain, it could be that the neurons communicating between those two regions are 'misfiring' which of course causes a seizure.

Sorry, that would be my very amateur interpretation as a psychology student. Do the school allow him to sit out of those tasks? Could the hospital write a note for him? Makes sense to avoid any obvious known triggers I would have thought.

KnickersNotPanties Wed 19-Sep-12 11:20:46

Butter - I thought exactly the same thing. He read aloud on the EEG yesterday and did not seize. The neuro thinks it is related to breathing and has asked us to keep him reading for the time being??

butterfingerz Wed 19-Sep-12 14:09:53

Maybe they want him to keep as normal a routine as possible so that they can build a bigger picture of what's going on. It must be very difficult for you both. Neurological conditions are so perplexing, even to the specialists, sometimes there's no rhyme or reason.

Does he have any further scans or observations scheduled?

KnickersNotPanties Thu 20-Sep-12 03:29:14

No, we are just working our way, by trial and error, towards finding a therapeutic dose of the anti-convulsant drugs that he is taking.

He's had an MRI and loads of EEG's, a review with the Sleep specialist a scan of his abdomen and 5 lots of blood tests, so the consultant is keen to try and limit further testing. It's invasive and stressful.

Fingers x'd the increased dose has helped. Let's hope it stays that way.

kissingtoads Mon 24-Sep-12 23:12:55

Hi. My dd1 had her absences completely controlled with zarontin (ethosuximide). - it is the only anti epileptic drug that is specifically for absence seizures. Do you know why your ds has been prescribed epilim?

Luckily, dd1 wa only medicated for 1 year and is now seizure free.

Unluckily, dd2 had her first seizure 3 days ago sad

KnickersNotPanties Wed 26-Sep-12 11:50:48

Kissing - the Neuro is concerned about a higher risk of grand mal seizures - so he is on Epilim to control both types.

I truly hope that your DD2 experienced a one off...

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