Adding Epilepsy and how it has changed things for my beautifully complex child

It’s quite a bizarre feeling when a medical professional finally tells you what your gut already knows. I mean if you already know it why does it still send your stomach into knots, make your head feel like it will explode and fill your eyes with tears? Maybe knowing something inwardly but hearing it outwardly isnt quite the same.

Whatever it is, the day I finally heard the medics say my son has epilepsy was just like that.

It shouldn’t have been a shock, but hearing it still made me numb.

I should have been prepared, but hearing the words still felt unreal.

I had already googled it so many times so why did I suddenly google all over again when I heard it ‘officially’, desperately believing that the information I read would somehow be different?

Knowing something inwardly doesn’t ever prepare you for hearing someone else say it after all.

So my son has epilepsy.

It’s not like this is his first ever diagnosis. He collects diagnosis like some people collect coins or stamps. He’s a beautifully complex child who already has a list of conditions that would scare even the monsters under your bed! Severe autism, severe learning difficulties, neurofibromatosis type 1, microphthalmia, Persistent Hyperplastic Primary Vitreous, optic glioma, global developmental delay and now epilepsy. It’s a mouthful. We tend to shorten it to ‘isaac’ and we encourage everyone else to do the same.

So here he is.

Isaac. My beautifully complex son who now has epilepsy.

Despite so much against him Isaac had been doing well, though I guess that always depends on what you mean by ‘well’. He was attending school, he was eating and drinking and, now and again, sleeping. He was happy, energetic and full of life…until March this year.

I didn’t see it coming. Yes he has had minor seizures, or episodes before. He has been having absence seizures for years and had EEG’s several times. He has, like all children, caught various bugs and minor illnesses but despite the fact he has no speech at all I could tell right away when he woke on the 4th March that something was seriously wrong. In fact I had to wake him that morning which I can’t remember ever having to do. He spend the day like this, only walking to have what I knew was some sort of seizure then sleeping again.

I sought medical advice. I was told it ‘probably won’t happen again’, except it did. Again and again in fact. Each time lasting longer, adding more adjectives to describe what was happening and scaring us all more.

Until finally in July this happened.

One minute Isaac was sitting eating breakfast, the next he collapsed unconscious onto the floor, his whole body tense and writhing and his arms and legs shaking uncontrollably. A three and a half minute tonic clonic seizure. A four hour sleep followed by a second three minute loss of consciousness, rigid body and shaking.

And so we added epilepsy to his complex needs. We added medication that week too.

Medication has been awful. If we thought the epilepsy was bad the medication was even worse! My son became a shell of his former self, lost deep in a world of lethargy, nausea, confusion and distress.

I was told ‘it will pass’. It didn’t.

So we stopped that medicine and started another. This time he is more alert but the lethargy, agitation and mouth ulcers have caused him so much distress. It’s utterly heartbreaking.

He’s not at school much.

He’s not doing much.

He’s not eating much.

He’s not really interested in much.

Life is one huge effort for him right now.

Adding epilepsy to my beautifully complex child has not been easy; thats an understatement.

And the hardest part of all of this is he can’t understand what’s happening at all and I can’t explain.

I have never felt so helpless as I do right now.

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11 thoughts on “Adding Epilepsy and how it has changed things for my beautifully complex child

  1. I am sorry to hear that Isic now has epilepsy. I guess hearing something out loud makes it all the more real somehow. Hopefully, this new medication will keep him more alert and he will eventually be back to his normal self. Huge hugs xx

    Liked by 1 person

  2. Stay strong Miriam. The hardest part of all this is that Isaac doesn’t understand why and what is happening to him. In times like this just love bomb him. He will recognise that and it will give him comfort. When adding new medication I always try to keep everything painfully the same so my son gets comfort knowing not everything is changing whilst his body might feel like it is. His world is still the same.

    Liked by 1 person

  3. Miriam it’s just so unfair, I’m so sorry to read that Issac has been having seizures, I know I have found Ciarans epilepsy diagnosis as hard to come to terms with as his autism one, he was 9 when we received it, Ciaran seizures are nocturnal tonic colonic so little sleep for me, but as you said the side effects of the medication are horrible we only started on it last Christmas have been awful, for at least 6 months it was like I had a different child, hugs to you all xx

    Liked by 1 person

  4. I’m so sorry that you and your son are experiencing this. It must be extremely painful for you, as his Mum. It must be confusing and well, miserable for him to endure.
    Your story and his photos really touched my heart. My thoughts probably aren’t new or very helpful, but I just wanted to say that you’ll be in my prayers.

    Liked by 1 person

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