Nora, Uninterrupted

You all know that this year has taken a very strange vending for all of us, but actually 2020  had started surprisingly good for me and my family.

I have more often written about Nora in this blog and how her life changed when we discovered that she was afflicted by a still undefined neurological disfunction. Her clumsy and limited motoric pretty much defined her life and to some extent ours, but nothing threw us off balance as much as her chronic hyperventilation. This was also an obscure phenomenon which no doctor was able to explain, let alone cure.

Since her hyperventilation started, Nora pretty much stopped, her life could hardly come through the continuous attacks. Her whole existence was defined by it and for 8 years this ghost lived in our house and made of Nora a severely handicapped child.
About a year ago we started another round of diagnostics since we had noticed that Nora's motoric ha grown worse. This round brought us in Italy (pretty much a waste of time) again and in Belgium. With very limited expectations we visited a pediatric neurologist in Leuven, after talking to another doctor we got to see her. After the usual routine, she casually mentioned a medicine that they were using for children affected by Rett syndrome. These children usually do not live long and their life is also afflicted by chronic hyperventilation.
Not even in my wildest dreams I had thought that the nightmare in which we had landed when Nora's hyperventilation condition had started could be tackled with a simple pill. Not likely, I kept on thinking. We had tried so many things though that it did not seem a waste to try this one as well. Our Dutch neurologist did not really believe it either but I had definitely decided that this was worth a try, and nothing was going to stop me.

In years of battling with the Dutch healthcare system, I have learned a trick or two and one of the most effective means of getting something that they do not think necessary is having my husband ask for it. For some strange reason his nerdy candidness works in the system.

We started with half a dose in the Christmas week and against everybody's expectation and almost as a miracle her hyperventilation almost disappeared in a matter of two days. After one week we went to full done and the hyperventilation was completely gone. Nora was back, like a fantastic Christmas gift, her smile, her laugh and her lust for life which had been interrupted for 8 years came back a few days. We have been enjoying this miracle since then.
She used to hyperventilate an average of 20 minutes per hour, each hour. You do not need to be a physics PhD to calculate that this was one third of her waking life. Suddenly there was so much of Nora that the house could hardly contain her. We also had to learn how to deal with a typical 10 years old, all of a sudden.
A world of endless opportunities opens up for her again and this is still a miracle to which I have not gotten used yet, and I hope I never will.