What a year it has been. This time last year with regular treatment Kade was attending school 3.5 days a week. We had been on holiday where he swam, walked in the woods and joined in with board games at night with family. He still had low energy but absolutely no where near what I can only describe as a complete crash in May this year. To watch your child fading before your eyes is horrifying. I had looked at my son before and thought it impossible to fix his broken body, and there I was again, thinking the very same thing.
The slow steady progress Kade has made since May has been painful to witness. For him I will never know how it truly has felt. Mentally and physically his battle must have drained him of every ounce of hope, yet he continues on never giving up not once. Not once has my son turned round and outwardly complained, but what battles must go on inside his head. He is but still a child, I think this is something many people we have met along the way forget.
In May I heard the words chronic fatigue syndrome. Functional disorder to cover the awkward gait, inability to yet run and the pains he was experiencing. For me having seen my son so well the previous year it was a no brainier that my son still needed treatment, what is happening to him now is a physical illness and in no way mental. No amount of therapy alone will cure something like this. I have read about mitochondrial dysfunction, gut healing, autoimmunity, inflammation, gut microbiota, any thing and every thing, searching for ideas and ways to help him.
It would most likely be beneficial for Kade to have ivig alongside the protocols we are using from the private doctor, however this is highly unlikely to happen.
I can understand the need for Kade to be careful when it comes to pushing him self too hard physically, if he pushes too hard he will crash. It is a balancing effort every day that I have tried to and successfully increased over time. In the beginning he could not even manage to go to his tutor sessions, he was sleeping a lot , showering and playing on his computer occasionally. He had shut down and it was extremely concerning. So we started from scratch and 5 months down the line he is able to get up every day, go to tutor sessions, cook, play his piano and we have just recently began going to a pool once a week where he is free to do as much or as little swimming as he likes. This is where 4 months of a complete diet change has got us, 3 months of gut healing and mitochondrial support
I think when it comes to chronic fatigue you have to learn as much as possible if you are caring for someone with it. These people are not just simply tired. They are drained in a way you or I cannot physically or mentally imagine. Their pain is real and I can only tell by the look on my sons face that it is a pain I have never felt.
Kade was able to spend 30 minutes in the pool the other day, until his joints began to become painful. The chest pains I believe are from the build up of lactic acid in his system, this is a product of him producing ATP the wrong way within his body and causes muscles to ache. When you have mitochondrial dysfunction your body simply does not operate how it should. I am pleased to see Kade being able to do slightly more physically, it may not seem like a lot to others, however in our case I think slow and steady will win the race.
I would still like Kade to be seen by a cardiologist in particular to check his mitral valve. I think this should have been something taken into consideration as he has had an autoimmune movement disorder of unknown origin. To rule in or out any damage is the sensible thing to do.
So here we are in November. Kade is in a better place which is all we could have hoped for. I think back to when Jay was unwell as a toddler, how I never thought lightning could strike twice, but it did and the storm that followed has been long. I feel the sun on my face now like never before, living a life less ordinary teaches you lessons you would never otherwise learn. My youngest child is mature, deeply empathetic, dedicated, funny, engaging and caring, he could have gone through watching his sick brother and headed down a very different path. Don’t get me wrong he is still a typical 11 year old boy but there are parts of his personality that have flourished because of his experience. Kade has shown courage through out situations that would have broken a grown man or woman and shattered them to pieces. He is bright, funny, determined and has hopes and dreams that I know one day he will achieve. I look forward to the day I go to visit him, while he works from home, in his house in the country, he is an accountant, with his faithful bulldog at his feet, he is home.