Friday, 10 December 2010

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!


legend in his own lunchtime said...

My heart goes out to you. Spotting this type of epilepsy is so difficult, especially if you don't recognize it. You are doing the right thing in training his teachers, as they will see him the most.

Rob-bear said...

I can clearly visualize just how difficult this has been. You have really taken the bull by the tail (as per W. C. Fields), got others "on side," and are finally getting some appropriate action. A huge amount of hard work. Way to go!

Now, let's hope the new plan is effective!

SmitoniusAndSonata said...

All your hard work will be rewarded when this treatment kicks in .
Good luck to you both !

Spencer Park said...

I have my fingers crossed for you and the boy. Best wishes for this treatment.

PS. I don't feel you should feel guilty asking the school to take note and help your son. I'm doing the same for my daughter.

Go on you know you want to...


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