Epilepsy - The art of concentration

Just when I thought we’d got everything sorted about The Boy’s Absence Seizures (one of many forms of Epilepsy) another problem leaps to the fore, the fact that he doesn’t know the art of concentration.

Sounds terribly silly doesn’t it. But imagine if you will having to do a timed maths test or a tricky piano piece for an exam. No problem, difficult but with a bit of concentration you can do it. Now get someone talking to you asking you incessant questions every now and then and you fall to pieces because you cannot concentrate properly.

Imagine if that was your whole life, if you knew nothing else. Just as you are about to grasp the nub of something you lose the plot, you miss the punch line, you cannot concentrate. With Absence seizures your brain stops for a few moments every now and then. You vague out, you are not there, some people may think you are day dreaming but as far as you are concerned no time at all has passed. Life is a broken record jumping about for no explicable reason. It must be very confusing. You have to try really hard just to get along. Now here’s a thing you cannot even try to concentrate because you actually need to concentrate in order to try.

So it’s no use me saying to The Boy: “TRY!” when he doesn’t know how.

So how do you explain the concept of concentration, of trying, to a child who has never been able to concentrate? It has me flummoxed. But I cannot tell you how often you need to try in the course of a day especially when you are an eight year old boy.

His reading is behind as is his writing, maths, all forms of sport everything because of being unable to concentrate and unable to try. Now he’s able to concentrate thanks to the drugs (ethosuximide) he’s on as he no longer has the absence seizures, but he doesn’t know how to apply it. He doesn’t know what to do. Most people learn pretty young that if you concentrate and keep trying you can do things and it comes easily for him it’s like he has spent a whole lifetime of disappointment and has given up.

His teachers forget or else don’t know that this is a problem and get cross with him or else write him off as not sporty, not musical, not arty, not academic. They say he has an attitude, a bad one and gives up too easily. I am saying give him a chance, support him, keep going with it because he’s going to get better and better and quicker and quicker but he needs them to be as enthusiastic and supportive as they would to a child three years younger. It’s a tall order I know, it’s not something that’s on the curriculum and it won’t be easy. It’s something I have to remember too.

Concentration is something we take for granted, we don’t remember learning it, so think therefore that it is easy to learn but as I am finding out it is an art…

Help - can children have depression?

I love my boy I really do but at the moment he is breaking my heart and I don’t know what to do.

There is no life in him he slouches about and seems uninterested in anything. I asked him what was wrong and he said he just wanted to sleep because it was quiet. “I only want to sleep Mamma,” he said.

He’s only seven, though in a month he’ll be eight, and he doesn’t seem to care about anything at the moment. Not his toys, his friends, school work. He whines a lot and is beastly to his brother and well I land up shouting at him in frustration as he doesn’t seem to hear anything I say such as put your shoes on, sit up, eat your food. It seems as if I am always telling him off and it’s exhausting. I tried cajoling him, letting him be but it just gets worse. So I chivvy him, hassle him and push him along.

Recently he’s gone off his food and the boy, who once was adventurous, now picks or else says he doesn’t like it and I am at a total loss.

This morning he peed on the rug in his room. He couldn’t be bothered to go to the loo so he just peed. I will add that he peed in his nappy, as due to his epilepsy he has problems staying dry at night. But this was when he was wide awake. He doesn’t seem to mind that his nappy is full of pee. It stinks and must be so uncomfortable. I don’t understand why he doesn’t care.

I thought once we got his epilepsy under control which we have life would be so much easier for him but it isn’t. And it’s so unfair.

So now I am looking for ways to help him to boost his self-esteem to make him happy and I feel that I am not the one to do this, I don’t know how. I don’t know how to help him as he doesn’t seem to want to help himself...

It worries me because his behaviour seems very like that of someone who is depressed but can children get depression?

I thought about his epilepsy medication he’s currently on Ethosuximide and Sodium Valproate both of which have depression as a side effect…but surely not in one so young?

Epilepsy - why is it SO exhausting!

For the last two years I have been querying the powers that be about The Boy and his treatment. At first it was a battle just to get them to agree that there was a problem. I was vindicated the ECG proved what I was saying. Then finally getting treatment I dared to quiz that, for two years.

I kept saying that wasn't the treatment meant to stop The Boy's seizures? I never got a straight answer. All I got was scepticism and a supercilious raised eyebrow.

Basically I was not believed. So I noted down and got his teachers to note down all his seizures. Now that in itself was difficult, for it was the blind leading the blind so to speak. I had to learn how to recognise these fleeting passes and then having to teach his teachers how to recognise them. We did it but not without some difficulty. Every one of the staff at the school had to keep watch over him and among a couple of hundred children that is a difficult even at the best of times.

To make matters worse we changed schools and I had to start with my teaching all over again. It was exhausting. Now finally the doctors are taking note especially when faced with all the notes and diaries I lug along with me to every appointment.

Yesterday we spent four hours in the hospital sorting The Boy out and now he's got new drugs to try out and all the note taking and diary keeping continues with me informing all and sundry what is going on. Asking them to look out for odd behaviour in a child that is already odd. To note down things they think might be adverse reactions to his new drugs such as increased irritability and excessive sleepiness and of course to keep an eye on everything else. They are saints and I feel so guilty about making them do this again. I keep saying only a few more weeks and we'll have it under control, I do hope it isn't wishful thinking!!!

The Boy is now taking Sodium Valproate in the form of Epilim Chrono and Ethosuximide in the form of Emeside in the hope that he can be weaned off the epilim once the emeside kicks in. It will take about two months all being well. And hopefully, cross fingers there won't be any seizures for the answer to my question is this: The medication is meant to STOP the seizures from happening at all.

PS ThinkingSlimmer - Not a good day today either I am really pushing the limits, very aware of how I am slipping. . However, still thinking about my food in terms of how much I am eating so hopefully I will count that as a good thing!