Back together again

As we arrived at Joshua’s respite provision yesterday morning, he was sitting waiting for us in their lounge, surrounded by attentive ladies. He gave us a flash of his smile but then, as predicted he sulked. He became unresponsive and looked away rather than respond to our invitations for hugs or high 5s! The reports were all positive, that he had eaten well – even stealing a staff member’s toast at breakfast! – slept well and had won everyone’s hearts :’They all want to take your Joshua home!’ I was told.

We went from there to a hospital appointment under an hour away where we were meeting the epilepsy nurse to discuss an alternative epilepsy treatment VNS therapy, or the Vagus nerve stimulator. It involves day surgery to insert some equipment under his skin that regularly fires electrical current, rather like a pace maker, only into the brain to release synapses and hormones which can in a third of patients, reduce seizures by half. The nurse explained how it would look, work, what the statistics for success were and the potential side effects.

Given that Joshua has not had a major seizure now for 33 days – three times his previous maximum! -we decided during the appointment to see how things pan out as now does not seem to be the right time to be launching on a new therapy. We will continue to explore this option and have not closed the door on it for the future, but we are not actively pursuing it right now. I had hoped that VNS would mean that we could start to reduce his medication, as I now believe that it is the drugs, rather than the seizures, that make him so sleepy during the day. But the nurse explained that this was a rare outcome as VNS is not a cure, just something that alleviates some of the seizures or lessens their impact. It takes up to two years to reach a therapeutic level to assess whether or not it has been a success and so I am not sure that it is the magic wand that we are always searching for.

The nurse also warned ‘ be careful what you wish for’ as many patients become more alert on VNS, which sounds like a positive to me. But she explained that once the epilepsy was alleviated, that some children’s autism then came to the fore and they struggled to handle the world that they became more aware of and developed behaviourial complications that they had never shown before. Some parents had begged her to turn the equipment off again as they could not manage the alert, challenging child that it revealed once the epilepsy was reduced.

So it was an interesting meeting, one that has given us food for thought and fortunately by the time that appointment was over, Joshua had forgiven his parents for ‘abandoning him’ and we enjoyed lunch together before heading home.

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