Tag Archives: epilepsy

Medication potential

When L began seeing her neurologist, we were told that medication for her type of epilepsy was rarely called for.
Since L has been having frequent Magic Hand episodes, she is now back under review (which is why we took her for another EEG.)
Each time L goes to see her head Dr, a summary letter is sent to us and the health centre. The most recent one came today.
I knew medication was a strong possibility, but this letter indicates that medication is the next step for L. We’re still waiting on the results of the EEG.
I don’t know much about meds for epilepsy, but we were warned that they can affect behaviour and personality. She could potentially become more aggressive as a side-effect, although it’s hard to tell whether the changes are because the discharges in  her brain are being suppressed or because the meds are causing a change in the delicate balance of chemicals.
Knowing that my own delicate balance is a little precarious and there is depression, anger issues, anxiety on my side and Asperger’s on both sides of her family, the potential frightens the poop out of me.
Still, if it means she can have as normal a childhood as she can get (with us as parents, it’s unlikely to be that normal!) we need to give it a go. 

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Epilepsy update

Hello again.

It’s been a few months, hasn’t it?

Anyway, I’ve been updating some other blogs and having a break away from writing but now I think it’s time for a good old brain-fart.

L was diagnosed with epilepsy 2 years ago after a traumatic 40 minute tonic-clonic seizure. She did a three day stay on hospital where she had an EEG which (at that time) had indications consistent with Benign Rolandic Epilepsy in Childhood (BRE, BREC). She had an MRI just to make sure and when that came back all normal, her neurologist began a monitoring program.

The day before her next consultation, she had complex partial seizure. We did an ambulance journey and spent four hours waiting in A &E majors ( the bit where they have all the seriously ill patients which is pretty gruelling) to be told to go home and update her consultant the next day.

She was then put on six monthly monitoring where she would be discharged if she had nothing after a year.

Well, the first six months were fine, then she started school. We thought “magic hand” – she describes it as her hand moving on its own and says its tingly – was an aura, however when she started to get magic hand more than a couple of times a week, I began to wonder if this was far more significant.

I brought it up with her neuro at the last consultation and she said it is likely to be partial seizures, especially as its generally accompanied by a short period of confusion, clinginess, or feeling strange.

We are now into a new ball game with the epilepsy. No, it’s not severe, but if magic hand is seizure activity, she has had probably 20 seizures over the two year period and seems to have them in clusters when she’s tired. This could lead to the need for medication and that’s a pretty scary thing as it could potentially change her personality.

Anyway, as part of this new discovery, she has to have another EEG in the morning. The last one, though indicative, was inconclusive. So this time I’m hoping for some answers. It won’t change much, but it’ll better prepare us for the future.

The girl

My eldest has always been a challenge. She’s made me face up to a lot of my past and driven me to points of frustration I didn’t know I had.

We knew she would be special. When she was born, she had a tongue too big for her tiny mouth, so it poked out, and a fontanelle which was outside the average size. She was checked and deemed ok, but I was so self-absorbed, I missed her growing up.

She would scream at the end of the crocodile verse of “row row” by 5 months. She knew shapes at 10 months. By 12 months she was talking coherently.

Then at 2 and a half, with her fontanelle still slightly open (they should be closed by 18 months) she had a seizure. She was put through tests and we had a gruelling couple of months before she was diagnosed with benign Rolandic epilepsy in childhood.

I’m reading a book called Musicophilia by Oliver Sacks. One of the things he talks about is using epilepsy medication to control auditory hallucinations since it calms the over stimulus of those neural pathways. It seems almost fitting then, that we would discover tonight that our girl has perfect pitch.

I had suspected it previously, but now, hearing her sing intervals so effortlessly, it all makes sense.

Her favourite song is “Call me maybe” by Carly Rae Jepson, which she can sing in tune to the instrumental. I struggle with this and I have a trained (but out of practise) ear. She can also sing it perfectly in tune and in the same key as the original, despite not having heard the original for a day.

There is something very special about my girl. She is gifted.

Epilepsy

It’s official.

L has epilepsy. 

The definition of epilepsy is two or more seizures.  L has only had one seizure.  Every one is allowed one seizure.  Normally.

You see they don’t normally investigate a single isolated instance because seizures happen.  They happen for lots of reasons.  Once, this one time could be a one-off, so normally our local hospital wouldn’t bother to investigate,

L’s seizure did not fall into the normal category.

It started primarily with her left side and once it was over, her left side remained weak for a few hours.  This always flags up as unusual and cause for further investigation, even though after some questioning, I have found out that some weakness in one limb or side of the body is common.  She wasn’t found to have a fever when the first responder arrived, which is another flag.  Young children are prone to seizures when they are ill, particularly if they have a high temperature (although you lot will already know this – I know one of my worst fears was the dreaded febrile convulsions.) The final cause for concern was the duration.  Thirty minute seizures are a medical emergency.  L was forty minutes.  That is a long time. A forever really.

So, they investigated.

The awesome (yet also slightly scary) news we had on friday was that her MRI was normal.  There is nothing structurally wrong with her brain which would have caused the fits.  A relief.  The alternatives are scary…

But they also would have offered an explanation.  They are something that can be fixed (for the most part) so therefore they would take the risk of seizure with them.

Now for us and their childcare and anyone who looks after my daughter the risk is there.  There is always a chance she may have another fit.  She has no triggers so we can’t control what she has access to and they won’t medicate for a single episode so we just live and wait.  I am constantly terrified she will go again an the sickening memories will return and be played out.  I’m scared she’ll do it when I’m there and this time I won’t recover.  I’m scared she’ll do it when I’m not there and I’ll feel guilty for not being there for her when she is terrified and just needs her mum.  The whole thing has my head whirling.

We’ve told everyone about the clear MRI and it’s been asked if that just proves it was a one-off.  Oh how I would love too be able to sweep it under the carpet.  To pin it to a virus or similar and just carry on would be great.  But she had an EEG during her time in hospital. 

An EEG measures brain activity and draws it out on a neat little graph.  I spent a long time reading about the brain and how it works and I still don’t fully understand.  From the information we have though, Ls brain activity is abnormal.   She has discharge spikes.  They are regular and linked to specific areas of her brain.  When one of these spikes reaches a certain threshold, she will have a seizure.  There are no set triggers to these spikes.  The threshold is her own tolerance which will rise as she gets older. 

The spikes she has are typical of Benign Rolandic Epilepsy.

So we wait.

Hazy

As you can imagine, everything at the moment is a litte bit hazy.

I’ve given a start date on the new job, although I’m still prevented from sharing my news with my collegues.  Office politics.

I know there will be at last two people who will be super gutted to hear about it.  Maybe I should wait to tell them in person.  Haha.  I’m not evil.  Really I’m not.  Just sick of certain things kicking me repeatedly in the face.

And I get my name on the door.  Yeeeeeehhhhhaaaaa!!!

Ls epilepsy has kicked us though.  Really kicked us. It’s a life changing thing, you know?  Selfishly I keep thinking that I can’t let this ruin my chances at this job.  I can’t seem unreliable.  I’ve not told my new boss about it because I don’t want him to regret his decision to employ a) a woman in an extremely male dominated environment and b) a mother who needs to leave the office all the time. 

I remember I took a lot of time off with L being ill before going on mat leave.  Just coughs, colds and viruses, but still.

It might be hard to persuade OH that he will have to take over at least some of the responsibility for sick-care.

I also feel a bit like I haven’t had a chance to be happy or excited about the new job.  Mainy because I have been worrying myself extremely thin about L and her diagnosis.

Not really helping the anxiety.

Picking up the pieces

Today, as we try to return to normality, Monday seems so fucking far away.

The memories are there, but I’m blocking them.  I don’t want to see them any more.  I don’t want to be scared of her.

I don’t want to think of her as a ticking time bomb.

I feel unsettled. 

Something is bugging me about her diagnosis.  Forty minutes is a long time to fit.  A very long time.  And she was seizing before the paramedic got here.  When she couldn’t talk.  When she was absolutely terrified and no amount of cuddling could comfort her as her brain decided to take a jaunt off and leave her body to cope.

I hate it.

I hate that Monday happened.

I hate that I’m scared of the phone ringing when she’s not here.

I hate that I spend most evenings sending OH upstairs to check on her.

I hate that it will only take one thing to spark my own mind into a spiral of flashing images that I will never ever forget.

I’m so worried about her MRI and she hasn’t even had it yet.  So intensely worried that I can’t even begin to think about it.   I want it to all be over.

How the hell do I sort this mental mess out?

When a child has a seizure

I know people with epilepsy. I have seen someone have a fit from the sidelines and it was scary.

Now that is a possibility every day.

On Monday, just as I am writing the last post, I get a phone call.

“L has a rash and she’s unresponsive.” Preschool. “She told us she didn’t feel well.”

“Oh. OK.” Great. She’ll probably vomit and poo and curl up on the sofa. I prepare myself for a week of unpleasantness. I’m not too worried about the rash as both my children get rashes. They both had baby acne and L suffers with heat related rashes. She’ll also get a rash if she’s annoyed or tired so facial rashes don’t concern me too much.

“Do you want us to bring her to you?” Play leader asks.

“Oh that would be great.” I’m in the middle of trying to get O down for his nap so it would be easier if they came to me. I hang up and finish off the post.

A little while later there is a knock at the door.

“You need to phone an ambulance.” She says, stepping aside to reveal K carrying a limp, pale L. L is gurgling and drooling like she is trying to speak but her tongue is too big. She’s looking around but her eyes are dead. Her face looks swollen.

This is not my child.

I cry. I scream. I feel sick and fear and terror as a piece of my heart is ripped out.

Is she dying?

Can she breathe?

Meningitis?

I pick up my mobile which chooses this fucking moment…this awful horrible moment to freeze and I hurl it across the room.

K and Play leader tell me to calm down

“There’s a landline.” I say. No time to piss around with shitty software.

I run to the phone in the dining room.

I’m holding it together as I dial 999 and ask for an ambulance.

One thing could tip me over the edge but I’m holding it together as I answer the important questions – address, telephone number, whats wrong.

K has taken L in the other room so I can’t see her but I can hear K cooing it’s OK.

I pretend this isn’t happening.

Yes, she’s breathing. No, she hasn’t had an accident. Send an ambulance.

“Madam, I need to ask you some questions.”

“She’s two, she’s in the other room, send an ambulance.”

“You need to be in the same room…”

K brings her through. She still cooing it’s OK. We’re all scared. L is clicking between the gurgles. What if she’s like this forever?

“Send an ambulance.”

“You need to answer some questions madam…”

“I know you get this all the time, but SEND AN AMBULANCE! SEND AN AMBULANCE! SEND AN AMMMMMMBUUUUUUUULAAAAANCE.” I scream down the phone at the dispatcher, his calming method failing. Fucking questions.

Play leader takes the phone and K hands L to me as I sit on the sofa.

Baby stay with us. Don’t go.

I hold her tight, the clicking and gurgling noise burning into my brain. It will stay with me forever. The left side of her face is slack, pulling her features down. Her eye begins twitching. Her stare is so empty I can see her brain short circuiting.

A solitary tear rolls down her right cheek. She’s scared. I can feel it. Every part of me holds on to her. She can’t talk to tell me but she’s trying to.

Stay with us. It’s OK baby. It’ll be OK.

What if she’s like this forever? What if each misfire is damaging her?

“She’s fitting.” I call through. They are still on the phone. “Tell him she’s fitting.”

A paramedic arrives and we lay her down on her side. Her left arm joins in the rhythmic movements. She’s put on oxygen. Her breathing is shallow but regular. The mask bunches up her face and closes her eyes and I hope she loses consciousness.

We strip her from the waist down and shes given rectal diazepam. Her whole body begins to jerk. Once a second, each muscle contracting in unison. Her eyes have rolled back in her head.

Come back. Make sure you come back.

“Talk to her mum, she can probably hear you.” The paramedic says.

I lean over her convulsing body and sing into her ear. Twinkle twinkle little star. Baa baa black sheep. Away in a manger. I tell her she’s a good girl, that mummy is here. I stroke her hair and her leg while they do her sats and blood sugar.

Why hasn’t it stopped? Why hasn’t the diazepam worked?

I’m told to get ready for the ambulance. I get my shoes and my coat on. O is put in his car seat.

I take a second to wander outside and ask myself where the fucking fuck is the ambulance?

OH arrives looking pale and sick.

“She’s having a fit.” I tell him. People crowd round her. She’s starting to come out of it. The jerking has stopped. Her lips are blue and puffy and she stops breathing for a few seconds. It feels like a few hours. I tell them she’s not breathing and we roll her over and call her name. They strip her clothes off so we can watch her chest move.

She opens her eyes.

She begins to respond when we call her.

Then the crying starts. She howls. Over and over and i scoop her up and hold her to me, tell her it’s OK. Tell her I’m here, she’s not alone.

The ambulance finally arrives and we climb in.

They tell me how brave and strong I am. They say she was fitting for forty minutes.

I’m not strong. I’m doing this for her. I want her back. I want my singing chatterbox back. I want the girl who annoys me so much with her toddler logic back. I want her back now.

I sing to her in the ambulance. I sing over her screams. I lull her into rest periods where she gains the energy to yell again.

At the hospital I stroke her hand and her hair.

“I’m going to leave the oxygen there are they sometimes fit again as the medication wears off.” A nurse says, leaving the hissing mask at the head of the bed.

OH and mum turn up and we take turns comforting her.

Finally the crying stops and she looks around.

“Mummy.” She whispers. I go over and she hugs me tight to her with her right arm. She’s yet to use her left arm.

But she’s back. That’s the important thing. She’s back.

I point out her left side weakness to the doctors and they make her stand up, which she does.

It’s normal.

She has Benign Rolandic Epilepsy in childhood