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 too?
There is no evidence that IVIG helps with tics, cfs, etc blah blah blah and bollocks to that.
I was over joyed to read an article today in the national papers showing a possible link with ME/CFS to the immune system.
We took Kade to see a neurologist in Birmingham three weeks ago and he prescribed pregabalin. He also diagnosed Kade with Tourette’s syndrome (possibly triggered by PANS) which in its self is useful because he will get appropriate help at school when he returns. This also means Kade can learn how best to cope with having a neurological disorder and how to move forward in his life. Since Kade has been taking the pregabalin he stopped having chest pains after around 7/10 days. The neuro in Birmingham examined Kade and concluded he is most likely suffering from musculoskeletal pain. Kade’s muscles in his shoulders in his neck and back are never relaxed, possibly the reason he continues to have an awkward gait and pain (this too has improved slightly since around 10 days of taking the pregabalin). So the pain that was said to be in my sons head, was in fact physical pain and he needed symptomatic relief. He also stated that in his opinion Kade has a background history of PANS which also will be helpful in the future if Kade needs any treatment for this.
Thankfully I feel that all the alternative treatment we are doing through Dr G is having the desired results on Kade’s PANS and CFS symptoms, so we will continue on this road. Now we have the pain under control, it really is the CFS that is the major problem, recovery can take years and it is a slow process.
This year has probably been the hardest of all since Kade became unwell. I think because he experienced such a remarkable recovery with the IVIG that was then dismissed by doctors. Watching him dealing with slipping backwards was, as a parent, terrifying. There have been many dark days, weeks and months this year.
The one thing I have learned is that no matter how many times you get knocked down you must get up, you have to grow a thick skin, there are always always going to be the people who look down their nose at you as if you are some neurotic mother. You can have as much proof as you like and someone can turn round and just write it off, because it’s not in their text book. With conditions that affect the immune system you need to find a doctor who can think outside of their textbook, because you don’t have 20 years for the book to finally be written (and trust me it will).
Please listen to your instinct, what is it telling you to do? Act upon it and you will succeed. Let others dampen your instinct and it will soon fade away.
So the boy who in May this year, who could barely shower, had his first driving lesson yesterday. The boy who is receiving appropriate treatment is making gains. The boy who’s coming back again.
Below is Kade in July this year, the difference is clear to see, this is how he was when we were just beginning his journey in integrative medicine…