The Boy’s Epilepsy Diagnosis – 3 Years

It took the Doctors 3 years to formally diagnose his Epilepsy.

So, after the Boy’s first grand mal seizure on the basketball court, and the doctor on calls subsequent none diagnosis of cause, we spent the next 6 weeks backwards and forwards to the GP clinic to see what had happened. The GP was less than helpful, (there’s a shocker for you!) mainly because diagnosis of epilepsy appears to be above his pay grade. that shouldn’t have stopped him from referring the Boy to a specialist though! That event only took place after I went postal on the GP’s head after the Boy suffered another seizure.

This one was at college. He had just come out of his lecture, and as he pushed out into the hallway he collapsed and fell from his chair, his head hit the floor this time and he cut his forehead open. He was in seizure for 15 minutes and the lecturer called the paramedics and myself.

I arrived at the same time as the paramedics and between us we agreed that the boy had to go to hospital because of the bang to his head. They put him in the back of the ambulance and took him to our local hospital for assessment. I followed in the car. Desperate, panicking, worried to death he would come round to a sea of nameless faces and he would panic.

In the event, he came round as the ambulance arrived at the hospital, the paras were brilliant as usual and kept him calm and comfortable until I got there. They hadn’t tried to over explain anything, they just kept saying, ‘It’s alright son, your mum is right behind us and she will be there as soon as we open the doors.’ It was enough to keep him calm.

He was kept in hospital for 3 days to do X-rays on his head where he had banged it, and also to run tests to find out what the cause of the collapse was. Nobody was talking about Epilepsy. It never got mentioned.

This situation continued unabated, unmedicated and undiagnosed for three years. The boy finally received an appointment with the epilepsy consultant almost 3 years after his first grand mal seizure.

On the day of the appointment the boy requested that I come in with him because he would struggle to explain what happens because he is ‘out of it’ as he puts it. I agreed and we explained to the consultant that this was the reason I was in attendance. I could provide a clearer picture of what had been happening for the past two and a half years. There were two trainee doctors sat at the back of the room and we were asked if we minded them being present. We didn’t. In fact, I actively encourage more people to allow them to be present. It is how they learn best. First hand.

Throughout the whole explanation of 6 seizures over 2 years 7 fits a year, and 20 plus absences a month (very, very high number) that the boy had experienced, the consultant sat with his legs spread wide, his elbows resting on the arm of his chair, his finger steepled under his chin and his eyes closed. I actually thought he may have gone to sleep on us at one point. We persevered and catalogued each and every episode with as much detail as was humanly possible to give. we also gave back information on his hydrocephalus/shunt condition. At the end of it all we sat and waited for him to say something.

What he said made my head pop.

‘Well Sir, I confess, you are a bit of a mystery.’ He finally opened his eyes and looked at the boy. ‘None of what you describe can be attributed to epilepsy I’m afraid. This may pass in time, but I would be remiss in rushing towards a diagnosis that will hinder and therefore change your life forever.’ He was spinning his chair from side to side as he spoke.

I was shocked. I was dumbfounded. I wasn’t the only one. The two trainees sat behind me looked exceptionally confused at his declaration and one of them shook his head at me as if to disagree. I spoke quietly and clearly so as not to be misunderstood by the sleepy consultant.

‘So, what you are saying is, the boy categorically is not presenting with symptoms that are epileptic in nature or appearance? You are saying that presently, regardless of the health issues he is having, he can drive a vehicle? Is that right?’ I waited.

He glanced down his nose at me before he spoke. ‘Yes, I see no reason for the Boy not to continue with driving lessons! You should not be rushing towards a diagnosis of epilepsy for the young man Mrs Strong. It will dog him for the rest of his life and prevent him from doing such things as driving a vehicle, certain types of employment will be closed off to him, there is a great stigma attached to the condition because it is widely misunderstood and it must be declared on any kind of formal declaration. Do you really want that for your son?’ He looked smug. Obviously, this was his preferred choice of put down. Berate the mother for being too pushy, for wanting to diagnose her son with epilepsy just because she wanted it to be that condition. Oh! Silly me, of course that’s what I wanted for the boy! Of course I wanted the seizures and the fits and the absences to be epilepsy. Why the fuck wouldn’t I want that diagnosis? Even the trainee doctors thought the consultant was wrong.

Instead of going very large and postal on the consultant’s head I merely said, ‘Well, to coin your own phrase, You Sir are not a mystery at all, you are a pompous Ass of the first order and I am calling for a second opinion from a consultant who can stay awake and focused during a consultation. I also want a consultant who can dress himself properly in the mornings, you have a large rip in your pants crotch Sir and it is embarrassing to see you in such disarray. We shall take our leave now, but you can be sure, you will be hearing more from me if that second opinion is not forthcoming.’

I stood up turned to the trainee doctors and said, ‘I do hope you get to spend time with a real consultant at some point.’ With that I walked out and the Boy followed swiftly behind me.

Three months later we received an appointment to travel to Liverpool, Walton Hospital to see the second Epilepsy Consultant. We were all geared up for disappointment number 2. We went into the consultation with absolutely no expectations of a diagnosis, what we got was the biggest shock we had received to date.

The Consultant sat and heard us both out, we told him everything from start to finish about what had been happening with the Boy. The consultant nodded and asked questions occasionally, but generally he was alert and listened closely. At the end of it he asked us to come around to his side of the desk because he wanted to show us a scan of the Boy’s head when he was five years old against one taken a few months ago.

Good Doctor!

We did as he asked and he explained what we were seeing.

‘I see you have a Chiari Malformation at the base of your skull, and looking at these scans I can tell you it’s dormant and has been for a number of years. However, that coupled with the Hydrocephalus and the insertion of the Shunt meant that you were more likely than not to develop Epilepsy. Any kind of pressure on the brain can be a trigger. Your brain has been under constant assault because of your pre-existing conditions. I am sorry to tell you that you do indeed have Epilepsy. I want to start you on a course of medication that will control the fits and the seizures, it may not control the absences we shall have to wait and see.’

I was once again dumbfounded, so I asked. ‘I’m sorry, you were talking about the chiari malformation like we knew the Boy had one, how long has he had that for?’

The Consultant looked at me strangely and then shook his head, almost in despair. ‘You didn’t know about it?’ He asked quietly.

‘It’s the first time I have ever even heard of it.’ I said.

‘I have no idea why you both have not been told about this condition, it can be quite serious if not monitored regularly.’ He then addressed the Boy directly. ‘Fortunately it became dormant around about the time you reached 5 years of age from the appearance of the scans and the information I have on file, you should have been told about it, I can only apologise for the lack of forthcoming information. But to answer your question Mum, he has had a chiari malformation since birth.’ He was genuinely disgusted that we had not been told.

Chiari Malformation where the brain stem is being pulled down the back of the neck by the spinal cord.

So, The boy had his diagnosis and also a pre-existing condition that we never knew about, he had his medication that would stop the fits and seizures, he had stopped his driving lessons immediately, for which he was most grateful. He hated driving, he said he never felt safe behind the wheel of a car. It was a relief to stop having to do it.

He has never, ever since then to present date, discussed the Chiari malformation with me, I think he has a mental block regarding that information. He doesn’t want another condition to add to the growing list of conditions he already has. I can’t say that I blame him. I can live without another one for the list too. The Chiari is dormant, I know what signs to look out for that would indicate it may be active again, but from what I understand the likelihood of that happening is very slim. It’s filed under, ‘nothing has changed, we just know more,’ and been put away.

Three years of hell stopped abruptly with the introduction of a tablet taken 4 times a day. The fits and seizures are largely stopped now although the boy suffers with a number of breakthrough absences every week. Usually brought on by stress.


It’s an ongoing situation.

All photos/images are courtesy of the Internet.

Published by gemstrong63

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7 thoughts on “The Boy’s Epilepsy Diagnosis – 3 Years

  1. What that first consultant insinuated at the time made me so very angry. what mother in her right mind would actively seek a diagnosis of epilepsy unless a massive amount of evidence was there to support it? I had to get a diagnosis so that we could treat the condition and get it under control! The boy was fitting and seizing on a regular basis, and it is the most terrifying sight to see your only child (he will always be ‘the boy’ to me, even as a full grown man!) lying prone on the floor utterly motionless and there is absolutely nothing you can do but wait it out. The fits are aggressive, they throw him around and he’s 6ft tall these days so I struggle to help him. He needed the medication to give his poor brain and body a rest from this constant battering the epilepsy was giving him. After every fit or seizure it would wipe him out and he would sleep solidly for 24 hours and have no recollection of the day before at all. Whether he had an event in the morning or the evening, the whole day was wiped out. We were both exhausted with it. I was at my wits end. I remember thinking this could be the thing that takes him away from me because nobody wants to diagnose or treat it. For the first two years the doctor kept trying to tell me he would grow out of it, it might not be a permanent condition, it could just be something and nothing. Then the consultant said the same thing, easy for them to say when they didn’t have to live with it hanging over their heads constantly. It got so that I would not leave the boy on his own at all. At 22 that was stressful for him, he wanted his independence and I was taking it away from him because of the epilepsy. I still struggle to leave him even now and he’s 30 in a few months! He tends to just roll his eyes at me now though and sends me packing! 😀 xx


  2. Praise be for a former diagnosis at last and that a medication has given
    the boy some relief and a seizure pass!

    Maybe someday, yes someday, arrogant doctors will at last pull their heads out of they their ass!

    Liked by 1 person

    1. Highly unlikely for the latter but yes a formal diagnosis after 3 years was such a relief for him and me too. It is a terrible thing to watch him go through the seizures and fits with no help or control over them. I struggle to contain my own fears in those times and I go into super vigilant mode and get too scared to leave him alone. In it’s own way my fear robs him of what precious little independence this condition has not taken from him. I have to battle that daily so I don’t wrap him up in cotton wool! Finding a balance is hard, but the meds have helped enormously and I know for the majority of the time they control his condition well. I leave him be and I go about my daily life, panicking quietly and screaming silently inside with a big smile on my face and funny words tripping out of my mouth to con people into thinking I can handle it all.

      Liked by 1 person

  3. It’s staggering how crass and insulting people can be when talking without any genuine sense of understanding or connection.
    I’m glad you found one who was still in touch with his humanity.

    Liked by 1 person

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