Lockdown for us was life. I never realised until Covid came along. Chatting to Kade, when it all began, I asked how he felt. "Well it's no different to how things have been for me"...point made. As time went on and I watched every one lose it. I reflected upon how I had felt for … Continue reading By his side

It is exhausting. Constant fighting. Arguing with strangers for pennies. Begging for help, I am not ashamed to say I have begged. I have asked the same questions a thousand times and still received no answers. I am more quiet than normal, people notice. I just need space to gather my strength to carry on. … Continue reading Always Right

While we wait. Once again I consider what the future holds. Assuming you have watched the video of my sons condition, you will understand what I say next. (See his video here https://thisisit.blog/2017/10/15/no-more-boxes/) What happened to him is something you cannot describe with words. To see it is to believe it. Even then, I have … Continue reading This Way

In our currant situation due to this COVID-19 out break many thoughts have passed through my mind. Sometimes I sit for hours just pondering what to think of it all (yes I am weird like that) After listening to many of my fellow PANS parents, likening the worlds currant situation to PANS itself, I whole … Continue reading The Fear

When you have a child diagnosed with a rare disease nothing prepares you. Growing up for me, life was ordinary, the only significant ailment I remember, was my brother breaking his arm when he was about 12 or 13. The second of four siblings, life was good. We had a nice home, we were happy … Continue reading When lightning strikes twice

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 … Continue reading Each and every single one of them.

Recovery is an entirely different rabbit hole in my experience compared to the illness of PANS itself. Unique to each child it brings with it new challenges. I have followed many a families stories to date. Some recovering, some relapsing, some still in the throws, some just starting out. Each one grips my heart the … Continue reading Your absolute best

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. … Continue reading For a second

Life is good, there I can say it. My son smiles and laughs. He rides his bike, he can go for short walks. His memory is improving at a dramatic rate of late, and his tics are barely noticeable. There is no pain in his world any more and he laughs at my attempts to … Continue reading Once more

A thousand days, more probably, I've learned so much, seen Kade make what seemed impossible moves toward recovery and watched as he navigated through his own personal hell. I have now heard that Kade's response to treatment was anecdotal. Makes me wonder how many others have had this anecdotal response and it has been disregarded … Continue reading Back Again