Friday, 23 May 2014

Epilepsy Week and my son's epilepsy

This week is Epilepsy Week and Epilepsy Action is focusing on diagnosis. They are asking people to share their stories of being diagnosed with epilepsy. All week they have been raising awareness of epilepsy and what support is available.

You can follow their activities through Twitter @epilepsyaction and Facebook.

Our first experience of epilepsy was when Seth was born. A friend of mine had had it as a child but I had never seen it for myself and I thought that having epilepsy meant having one of those seizures where you writhe around on the floor, foaming at the mouth. That's what I learnt from television.

As soon as Seth was born he was having seizures. I can't even remember the name of them now and it made him judder. To be honest, as a new mum I probably wouldn't have even realised it was out of the ordinary if the hospital staff hadn't explained that it was him experiencing a seizure. Medication quickly supressed them and by the time he was home, 10 days later, the episodes were passing and the medicine could be withdrawn.

Then 8 months later it all started again. This time he was having infantile seizures. I remember Seth would just suddenly throw his arms out. At the time Seth didn't really move at all so this was quite a shock. He would then be sick and go unconcious.  Another significant thing about these seizures was that a couple of months before they began Seth had been so unhappy. He cried a lot and I found it increasingly difficult to go out and join in the parent toddler classes because he would just cry throughout. However, when the first seizure happened it was like a storm cleared. Seth was happier and calmer. Every time he had a seizure he always seemed brighter and more responsive, at odds with how dangerous they potentially were. Steroids controlled these but Seth's weight just piled on. The side affect of the drug increased his appetite. I hadn't appreciated it at the time and it's only looking back at photos that I appreciate quite how big he became. The consultant explained that this type of seizure is particularly dangerous for Seth because it prevents cognitive development and wipes out any development already gained. Luckily we were on the lowest dose and it was proving effective. As his weight increased, the proportion of drug in his system was reducing without any sign of the seizures and so about 6 months later we cautiously stopped the medicine.

The following year Seth began to experience seizures again. They took all forms and Seth had a number of EEG's to monitor his brain activity. In fact, we were the first people to try out their new videoing equipment and it proved enlightening. We had told our consultant that we thought Seth was fitting. We described what we were seeing (some upper arm movement and stiffening, followed by sleep which made us worry the infantile seizures were back) and so were booked in for the EEG. During the test Seth didn't do what we had been seeing, however, by comparing the video with the brain activity they identified that he was having frequent seizures, the outward sign of which was simply looking down to the left. We had our own video evidence of what we had seen (from our mobile phones) and so it was identified that he was experiencing different, frequent, seizures throughout the day. As they weren't doing him any harm; were only lasting a few seconds and weren't upsetting him, we decided not to medicate but simply monitor it. Over the following 6-8 months Seth continued to have seizures which went from the frequent looking down and brief absences to a couple of full body tonic-clonic ones.  Sometimes he was sleepy afterwards and sometimes he just took them in his stride. They were usually precipitated by a sensory stimulating experience and music and eating were the biggest causes of an episode. We were introduced to the epilepsy nurse and how we should handle Seth's seizures. They increased in frequency and even scared us enough to call an ambulance once, so we were poised to make the decision to start medication again....and then they just stopped.

When Seth started school the seizures started again. During the first week of each new term, Seth would have a cluster of small fits and absences but, again, these reduced until for a couple of years he would have just one, or two small fits a month when he was particularly tired or feeling poorly. We became more relaxed about it all.

At the beginning of this year, however, it was identified that Seth was having frequent fits during the night and so we were all agreed that medication was required. The meds don't seem to be having any undesirable side effects. Seth isn't spaced out, a common side effect I have always worried about. He's on the lowest dose and I'm in no hurry to take him off this time. He's a happy boy, learning new things, at his pace, all the time. And I've learnt that epilepsy is a complicated diagnosis.

Sunday, 18 May 2014

horse riding and play centres

Seth had horse riding yesterday morning, as usual. This lesson was different, though. It was so warm in the building that the organisers decided that the horses could go for a walk. The other reason it was different was that as they were short on helpers I offered to walk alongside the horse (they have one person leading the horse and 2 people either side to support the child). At first I was very nervous as Seth moved alarmingly from side to side as the horse walked. However, I soon got the hang of it and Seth was very happy to be outside. I think it was the best session ever. Normally the horses are led around in a circle and up and down the area they use. However, because we were on a walk, it wasn't as stop and start and Seth seemed better able to get used to the horse's movement and adjust his balance. Whilst he did keep sliding slowly to one side, overall his back was much straighter and he sat really well.

Seth is just generally fab. He now uses his walker to walk to the school bus, and then on into school (and back at the end of the day). I am hopeful that one day he might actually walk unaided. He's even started to weight bear through his hands. It's a very small but significant step forward.

I've been crazy busy with Giggles Play; the sensory & soft play centre I mentioned in a previous blog. It's actually happening! It's incorporated as a Community Interest Company and at the moment I'm completing funding applications. It's all being held up by the painfully slow process of setting up a business bank account. The plan is to go 'mobile' for at least the first year and assuming my applications are successful, aim to 'open' in November. It will be nicely timed for Seth's birthday; I'll probably be it's first customer but will nicely showcase it's potential for birthday parties!