November 2018, Kade asked me what the 6th month of the year was. It was around 5 months since his IVIG had been stopped due to the national shortage. “You tell me?” I said. Considering he had been able to recite the months of the year since the age of around 4, like most children. “January, February, May, March, April?” That is how the conversation went. Once I reminded him it seemed to stick, however it was a little warning sign.
Academically Kade was doing well while he was receiving IVIG. So this set alarm bells ringing.
I had been slowly introducing each protocol from Doctor G one by one. This conversation prompted me to step it up a gear. I added detox, then shortly after the herbal remedies, to combat the coxsackievirus.
It was not until the November of 2018 that we managed to secure a tutor for Kade to enable him to sit his English National 5, despite this he managed to gain a B in his prelim in the March of 2019. In his Chemistry prelim he was awarded a C , for Math he did not score at all.
Math was the one subject he had barely missed out on. I discussed with his tutor how Kade had left the prelim insisting he had never been taught almost half of the techniques. Looking back I realised, that despite picking up his math tutoring first when he became well enough to attend the sessions again around July 2018 (for half an hour instead of the usual hour and twenty minutes) he was forgetting almost instantly what he was being taught. So even though, by the November/December of 2018 his brain had began really absorbing information again anything new taught in the previous months was null and void.
I explained the situation in private to his math tutor who took on board what I said. He retaught him everything that his brain had been unable to retain previously.
Kade sat his National 5 exams in May 2019. He was awarded an A for English and a B for Chemistry and Math. Only six months since being unable to recall the correct order in which the months of the year went.
We are just over one year into treatment with functional medicine. Going to see Professor Gupta in Birmingham and having his input to help with Kades symptomatic relief using pregabalin (introduced in November 2018) has also been invaluable. Kades psychologist has also been key in his path to recovery. Guiding him slowly and steadily, helping him achieve goals one step at a time.
In the beginning we only treated the immune dysfunction with IVIG. If I knew then what I did now, I’d have treated the underlying cause, ensured Kade had psychological input and made sure he received symptomatic relief, all at the same time. However here we are, and as they say, hindsight is a wonderful thing. I write this blog, in the hope it gives others clues that we may have benefited from if only we had known earlier.
It will be four years in October since Kades onset of PANS. He is making great leaps and is absolutely in recovery. He may not have regained the ability to run yet, however this does not stop him, he attends badminton classes once a week, in his own unique way he plays a sport he loves.
Following a specially designed timetable tailored to Kades needs he maintains good health. It is very important to ensure he does not exert himself to a point where he becomes unwell.
It will be four years in October since Kades onset, over 1400 days, over 30,000 hours. This is an entirely avoidable situation. Just think about that. For a second.