Return to sender

 

Return to sender

Today I packed up the seizure alert mat that I borrowed from our local epilepsy association. While packing it up I’ve decided to also return all of my son’s epilepsy. You see I don’t want it anymore and neither does he.

I can’t find the epilepsy receipt, but it’s definitely a faulty product so returning it shouldn’t be a problem.

My son unwittingly signed up to epilepsy four years ago. While I was unhappy about the underhanded tactics of epilepsy, a reassurance was given from his account manager/neurologist that it would only be a short-term contract.

That said contract has well and truly expired and I now want to close the e-account. We really don’t want it anymore!

But there seems to be a clause in the small print we were unaware of and epilepsy is trying to lock my son in as a lifelong member.

Things had been going well, but it has been a tough month for him. He’s been waking up exhausted, despite sleeping between 10 and 12 hours every night. The seizure mat has alarmed more than once and he’s been wetting the bed and himself.

We’ve got a video monitor, but up until now things were going so well and I had stopped turning it on at night. So after turning the monitor back on there could be no more denying. There caught on camera a ragdoll seizure.

It’s hard to watch. His head tilted to one side, eyes wide open and staring into darkness.

After a few minutes it stops and he begins to rub his eyes, all movement then ceases suddenly and he is still like a statue with eyes wide open again. His arms and hands remained fixed at the side of his face. He stays like this for minutes. His chest is not moving. When it ends he has a few small twitches and jerks before rolling on his side. He stares off again, before eventually falling back to sleep.

I talk with his neurologist, we first doubled his meds and now we have tripled the dose.

I wonder whether the meds in his system prevented his long status seizures. I am relieved he managed to self-recover and I didn’t find him cold and seizing the next morning. Despite my relief, I am grieving that he may face a life long battle with epilepsy. I hope I am wrong and what’s happening is just another glitch.

So far we’ve had no luck returning his epilepsy, but I remain optimistic. I work on two-year plans and while the first two plans haven’t quite worked, maybe just maybe the latest plan will be the one.

Take care,

Ragdoll Mumma Kelly

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One thought on “Return to sender

  1. Hello, thanks for sharing.
    Do you mind me asking what type he has? And how old he is.
    My 7yo, 8yo in February has Panayotopolous (closest epilepsy that her symptons present to), we got told she MAY grow out of it. At the beginning of the year she hadnt had one for 6 months, then BAM. I too had placed a used by date on her epilepsy. I grieved for the first time that month and felt so angry before carrying on with a the strong positive attitude. The next appointment they said that it looked like she was growing out of them but the eeg showed it was still there, that it was a possibility that of it went it could be replaced with absent siezures. This past year, I don’t know if I’m paranoid or not, but there has been many times that i felt she has unnaturally zoned out. I truly hope it is normal zoning out that we all did in childhood, but part of me fears it is not.
    Will your child eventually grow out of their epilepsy?

    Like

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