The last two straws

For the past 4 months we've been experimenting with new drug options for little monkey's epilepsy. It's in response to a change in the fit pattern which ended up in a massive status epilepticus lasting more than 70 minutes.

The first drug we tried was a bit of a disaster, he had a huge allergic reaction and puffed up like a huge red balloon. Poor little man needed 3 days off school to get over that.

The second one hasn't been much better, although this time the side effects have been different. It changed his behaviour, and he started lashing out at people. His most common trick is to scratch you round the face and it often comes without warning, so quickly that there's nothing you can do to stop it.

So yesterday was 'last straw day' for this drug. The transport people ominously turned up on our doorstep to tell us that he'd scratched another parent round the face for no reason causing quite a big scene at pickup time. And he had another fit, the poor little man spent all morning crying and throwing up after another one of his weird early morning seizures.

We looked at the seizure log and it turns out that he's still having the same number of fits as before we started on this drug, but it's turned him into devil child. No contest really.

But it's scary because the next status epilepticus could be even more dangerous than the last, and when they happen at night we have no way of knowing and no way of administering emergency care.  

Every time we try a drug it's a leap into the unknown. Every time we remove a drug the same. What will happen next and will we ever get control over these seizures? Nobody knows.

When going to A&E is actually ok...

Most parents don't go to A&E much, but we are there quite often. Unusually on Sunday our trip to the hospital was so 'normal' that it was almost good. Little monkey had been free-wheeling down the hill on his bike getting faster and faster. The only problem is, he doesn't know how to use the brakes. Quick as a flash he'd lost control and flipped over the handlebars, face first. One look at the great big gash on his chin and I knew we had to take him in. Once there, with pain relief administered he soon calmed down and we settled into the kids room for the interminable wait to be seen. But as we got bored and frustrated at being made to wait with a blood-stained child, it actually occurred to me that this was a rather good trip to A&E. Normally we enter through the ambulance bay doors, having come in on Blues and Twos. Normally he's wired up to a heart and BP monitor, with an IV in his arm and a tube down his nose. Normally he's unconscious and doped up to the eyeballs on various different tranquilizer drugs. Normally we have to spend several hours in the children's ward while he recovers. But this time it was what other people would call normal. He was going too fast on his bike, just like any other little boy. He fell off and cut his face, just like any other little boy. And we waited a whole hour for a 3 minute procedure, just like any other family. Sometimes it's ok to go to A&E, because it reminds you that he still does normal things and he's just a kid after all.

Stuck in a dilemma between medication and behaviour

These last 2 weeks have been emotionally fraught and we feel like we're trapped in an impossible situation. Little monkey had a very long, dangerous seizure in July and since then the doctors have been trying various medications. But it's taking its toll. At school they've had a series of angry outbursts where he's lashed out at staff and children, scratching, biting and kicking. They've had to adjust the staffing to cope because there has been a huge increase from last term.

So now we're stuck between wanting to have his seizures stopped because they're potentially life-threatening or living with him lashing out every time he gets cross. Luckily for us he is a great special school and they are being very supportive. The consultant wants us to give it another 4 weeks and see if it settles down. The drug does seem to be having a positive effect on his epilepsy, but can we handle the side effects?

When special siblings make you cry

"I want to die" she said softly to me. She's 8 years old and has been living with her special needs brother for as long as she can remember.

She's said it before. Last time I called in the children's mental health team. They did a load of work around worries and it went away for a while, but sometimes it comes back.

This time, though I decided to deal with it differently. Instead of being rational, sensible, explaining the finality of her statement, I decided to let her see me cry. Not to make her feel guilty for saying it, but to really let her know how much I want her to be here.

"You're so busy with him," she says, "if I wasn't here then it would just be easier, you would have more time." She wants to die or to go and live with another family, at age 8 perhaps these two things can seem interchangeable.

I tell her that no family is perfect, that wherever she goes there will be problems of some kind, that she is really loved and fortunate in many ways, that I want her to stay and it upsets me to hear that she wants to leave us.

Finally, when we are both in tears, she stops hiding her face and jumps into my arms. "I'm going to stay now," she says at last.

Special siblings. They tolerate a lot, they cope so well. But sometimes it has unintended consequences, and sometimes we both cry.

I had a career once...

Once upon a time, I had a good career. I had a high-profile, well-paid media job in London. Of course I knew things would change when I had kids, employers don't want the hassle of someone who can't come into work because their child is ill for instance. You have to make adjustments, switch roles sometimes. But I had hoped that after 6 or 7 years I could re-start my career again.

Then along came our little monkey. He was healthy and normal at first, but started having seizures as a baby. At the time I thought, 'As long as it's just epilepsy, it will be fine.' But it wasn't. As the years went on and he stopped learning to speak it became obvious something wasn't right. So I made him my job. I spent all my time learning sign-language, pushing for therapies and trying to integrate him into playgroup. Getting him a statement of special educational need was a full-time job in itself.

Now he's in a good special school and he's doing well there is cause for celebration. I am proud of what I've done but after 6 years devoted to trying to help him, I feel that I am missing out. I can't restart my career as I had dreamed of doing. Outside of school he needs a 1:1 carer, which means I can't send him to an after school or holiday club and I can't send him to a childminder who will have so many others in her care.

Which means if I want a normal job I would have to be earning a huge amount of money in order to pay for a nanny. I do have a job during school-hours, which on a practical level is very useful, but I find it more and more frustrating every day. My experience is not valued, I am not listened to, I am told if I don't like it then they have plenty of people waiting to fill my role. It's all such a long way away from what I had.

Most of the time, I think about little monkey and his sister. 99% of the time, they come first and second, I come last. But sometimes, when I've had a really awful day at work, I think of me and what I've missed out on because of his disability. And sometimes it just doesn't seem right.

How do I stop worrying enough to get some sleep?

What is it about motherhood that brings with it a barrow-load of worry? No matter how much you do and how hard you try it's nearly impossible to shake off that little nag in  your head. When the child is ill, it's almost constant. Regular kids get sick for a week or so, then it goes away. You worry about them for week or so, then you stop. But somehow I seem to worry all the time, during the day and (worst of all) at night.

He was 5 weeks seizure free when we went to see his neurologist. She was thrilled but the very next morning he had a fit. He used to have all the seizures in the afternoon when he was tired. Trouble is, now he's having them in the early hours of the morning. When I am trying to sleep. And the first thing I know is when he wakes up crying, vomits and cries for the rest of the day.

So my reaction? Worry. I go to bed worrying that he'll have another serious fit when I'm asleep and he'll stop breathing.  I wake up at 4am, sweating and my heart racing, worried that he's having another fit. I'm living in a sleep deprived state because I'm struggling to cope with the uncertainty of not knowing when it will happen, and if I will know about it.

I've asked my OT for an epilepsy alarm and put our names down with a charity that provides them, but there's a wait. Even when the thing arrives I don't know if it will work (my epilepsy nurse doesn't think they're very good). So whether I get an alarm or not, I still need to learn to relax. How do I let-go of my fears so that I can sleep?

Why do the holidays have to be so long?

Only 10 days to go and he's finally turned. We've done well to get this far. I know many parents living with special children have a terrible time in the summer holidays. I'm pleased that he's managed the lack of structure so well up to this point. And I'm pleased that my efforts with visual timetables (weekly, daily, sometimes minute by minute) have played an important part.

But I guess by the end of a long period at home he's just had enough. It doesn't help that his sister is away for the weekend, and Dad is home for the week. All changes to the routine which upset his balance. Then there's the new medicine - our consultant said the only side effect to worry about with Keppra was "rage". Now the rage, or anger at least has arrived. Routine jobs such has getting dressed have become beset with tantrums again, toys get thrown across the room, I am getting bitten and scratched. All these behaviours went away when he went to special school. Four weeks away from special school and gradually they come back. 

So I'm wondering to myself, why can't we have four week summer holidays instead of six and a half weeks? The extra days are for staff training which used to take place in the holidays when I was a kid. I know it would take a massive upheaval to change anything like this, but really some kids are just not cut out to cope with a long break from the kind of schooling that keeps them stable and feeling safe.

Now all I have to do is try to keep my cool and not completely loose my rag with him over the next ten days. Well I can try and if I don't manage it, I can try not to beat myself up too much. Nobody's perfect after all.