I find it hard to believe that this time last week, I was about to get a call from Joshua’s respite provision to tell me that the paramedics were with him and that he was on his way to A&E. That was a very stressful and emotional 7 days and they are starting to feel already , rather like a nightmare and not reality. Over the years, I have learnt several things about how to cope best with the unpredictability of life with Joshua :
- Accept that we are not in control of events in his life, that epilepsy has the upper hand and could jump in and takeover at any moment.Do not become too tied to plans that have been made, as they can be turned on their heads, so a flexible outlook is the only way to achieve sanity. So choose your friends carefully as they too need to be flexible enough to accommodate last minute changes of plan without blaming you .
- Make the most of the calm, seizure-free days but never take them for granted as the moment you do that, then you are asking for trouble and inviting seizures into your life. so you always need to be on red alert, even if a day starts well
- Try to relax and keep calm; do not get too anxious about the smaller seizures, as they are just blips along the way. Save your energy for the uncontrollable seizures that result in trips to A&E, as they are the most dangerous ones and they justify anxiety. Thankfully in his 17 years, we have not had too many of those ambulance dashes and I know that there are some epileptics who are in and out of hospital all of the time.
- Accept that there is not always an explanation as to why a cluster of seizures arrives at any particular moment. On this occasion, it was probably Joshua’s cold that made him more vulnerable to epileptic activity, but there is not always a clear trigger and often other people like to understand the reason , asking have his drugs changed for instance. I accept that these happen due to a deformity in his brain and so there does not necessarily need to be any explanation, it can be just one of those things.
- The nature of seizures, and their impact, changes all the time : the most dangerous period of Joshua’s epilepsy journey was when he was having full tonic clonic seizures that would send him backwards, flying through the air as though he had been pushed. As he was a tall boy by then, he was vulnerable to hurting himself on furniture and we had several A&E trips with his head cut on, for instance, the hearth, a table and a public toilet, even when wearing his helmet. Now they have altered and they are much more gentle in appearance : he will have a cluster of jerks in quick succession after each other, so they are very different and are easier to manage. But we never know what type of seizures lie in wait or how he will respond. When he was younger, Joshua’s seizures made him very tired and he needed to sleep afterwards. Post-brain surgery, we had the opposite and after seizures he would stay awake and restless for 48 hours after seizure activity.
- Be open -minded to potential treatments that are offered, as well as drugs and surgery, we tried the ketogenic diet. It was like an extreme version of the Atkins diet, which restricts protein and carbohydrates, but uses more fat in recipes. It did not work for Joshua, after 6 months of trying really hard, but it has been miraculous for some children. Keep hopeful that one day, a solution will be found for Joshua that will send this demon away for good.