Kade is around 12 weeks post IVIG. His IVIG was withdrawn due to a national shortage. IVIG gave my son access to life, with out it he exists in a world of mental and physical anguish. While receiving regular treatment my son went from wheelchair to walking, ticcing to barely ticcing at all, from excentric to calm, from unable to function to being able to function in the realms of a normal life. He attended school three and a half days a week, went to a math tutor, had social interactions with friends at school, he was living again.
It is difficult to watch as a mother, the decline in both his mental and physical health. He is tired and weak, mentally he is in a dark place, his only escape is his computer. His online friends are probably the only thing keeping him going.
I read time and time again, there are not enough studies or evidence to support IVIG treatment in children such as my own. My question is so who is going to make a start? Stop writing that same damn sentence over and over. I have read to date hundreds of stories from families all over Britain, I am sure they would be more than willing to take part.
Since our trip to London there has been nothing. Firstly the “treatment plan” was never followed. Instead of a gradual reduction of IVIG, along side steroids, my sons IVIG was just stopped. He reacted badly to the steroids so they were also stopped. We were also told he has to go back to psychology, after waiting the usual months and hearing nothing I made a call. Nobody in the department knew anything about this and I was told my son has been discharged from clinical psychology.
Kade has not been at school for months. The holidays were mostly spent in his room. Or visiting relatives at their houses. We attended my brothers wedding where Kade was to be an usher. He was unable to stand as it is uncomfortable for him, on the verge of tears he sat down. His muscles feel like they are tight and sore and he has to constantly move his head, neck and back. If he walks for any period of time the same thing happens. We walked for around five minutes yesterday and he just could not cope. His feet constantly scraping the ground he catches them and trips every so often. The anguished look on his face says it all, the brightness of the day hurting his eyes. He did come with me into the green grocer shop however so this also is progress, although I could tell he was not comfortable in the situation, this is what frustrates me, he tries so bloody hard to move forward. He has not given up once, he keeps going. Physically and mentally my child is hurting and nobody is doing anything to help him.
We have seen progress with diet change his joint/muscle pain is gone thank goodness. He has a fraction more energy he can get up and shower at 11am and stay awake. He had gotten so ill he was hardly able to get out of his bed and was not even able to attend his tutor sessions. He is now back doing his tutoring session. We have done this, alone, as we refused to sit and watch our child decline any further. This is not how it should be.
The fact my child responds positively to immune therapy is a very big clue for doctors. It is not a coincidence or any kind of placebo effect. The fact this is disregarded worries me greatly. How can treatment that gave a child their life back be denied? I was told it was “the powers that be” who made this decision. Who are they? Have they met my child? Do they know the first thing about my son? No. They know nothing and have based a life changing decision on nothing.
How has it come to this? To nothing, from a probable autoimmune movement disorder to zero.
For now we will continue with our plans we have from Dr G. It has not been very long maybe 6 weeks and progress is slow, but progress is progress. I have to remind my self, we have done this once and we will do it again. Kade can get better I have seen it with my own eyes this is the truth. We have found another way over a mountain that we thought impossible to climb even once, I know we can do it again, we just have to find a different way.
For me a picture speaks a thousand words. The first picture is Kade on a family holiday while receiving regular IVIG (October 2017) the second is now at my brothers wedding (July 2018). It does not take a genius to see what I can see.
Edited to remind my self Kades chest pains when walking are back. It now appears Kades chest pains have never went away. He was having them in July when on holiday with his dad when he was walking and also through out the holidays if we done anything physical. Which really was not often as I knew he was in no mental or physical state to enjoy anything like walking etc. When asked him to walk round the garden I timed how long it took for the pains to start it was 4 minutes and 40 seconds, he also feels woozy and like he has to breath harder.