Sometimes when I look back I wonder how we got here. The last four years have been intense to say the least. It is difficult enough having a child with a medically complex condition but harder when no one has the confidence to help.
It is not like in the movies, every one rallying around desperate to figure out what is going on. There is no doctor like in the tv series “House”. Instead there is radio silence. A deafening sound of fear.
Afraid to do anything, as let’s face it, they could make things worse.
When you hear the words “if he was my patient I would start treatment immediately” then traipsing back to Scotland desperate in the knowledge that time is of the essence.
This is the reality of what parents of children with PANS/PANDAS face. There is nothing. Despite having a child who is severely unwell there is no treatment readily available.
My son was extraordinarily lucky. He eventually received IVIG for 15 months. You would think that his response to treatment would be considered of interest. To my surprise it was not. Even though he regained the ability to walk, showed signs of being the boy he used to be before this disease took hold and his chronic fatigue became something of the past, my sons response was disregarded.
Completely disregarded. Think of that for a moment.
Then think of it every day and have the power to continue on.
Today Kade does well. Thanks to Dr G we found some one who believed and that is a huge part. Believing in your patient actually plays a part in their recovery. When something becomes so complex it is difficult to realise that the psychological impact has its role. We get so caught up in the physical cause that we become ignorant of the psychological.
To date Kade takes pregabalin this is a class C drug. However we are left for the majority of the time to crack on alone.
In my opinion Kade and others like him should be treated medically with the correct immune regulating treatments. Then receive appropriate physical and psychological therapy. They all deserve to receive treatment and rehabilitation. Each and every single one of them.