Tuesday the 31st of January was the first day of Kades IVIG. We rode in the taxi to the hospital at 8am. Kades body crashed around, the whole car shook continuously, it took an hour to get there.
The ward was by far the best experience my son had had so far in his journey. The staff were kind and welcoming. Did not bat an eye lid or make unhelpful comments like “oh its just fascinating”, “do they not know what it is” or “are you sure it’s not just a habit” yes actual medical professionals said such things infront of my child. They simply got on with the job at hand and made Kade feel relaxed. The atmosphere was one of real kindness and compassion.
Kade sat for around 6 hours for his first infusion. They have to start the infusions slowly at first then increase the speed over time. Antibodies from thousands of donors make up these bottles of clear thick fluid.
That night Kade was very sick with extreme headaches. Side effects I was prepared for but they still took me by surprise. Please make this be the right treatment. Please let this work, make it worth all this extra suffering I am putting him through. The following day Kade had to go back for his second round. I called and said we may be a little late as his head ache was so bad he could not get up from his bed and he kept vomiting. Kades suffering that morning was intense but he knew this was possibly his only chance at any kind of recovery. I do not know how he done it but he gathered himself together and we made it back for round two.
The basic idea behind IVIG is that the antibodies from the other people enter the body and kill off the antibodies that have gone haywire within the recipient. They also then replace them as they are healthy anti bodies. That’s really the easiest explanation.
These rogue anti bodies can cause so many varying symptoms. The majority of cases I have read about include some kind of psychosis. Often quite extreem the person is initially thought to have a mental problem rather than an autoimmune condition. Also I have read many a story where children appear to regress in age. Often they are said to be autistic. Fine motor skills can depreciate and learning can take a swift downfall. Tics, OCD, gross motor skills, anorexia the list really is endless. The problem lies where the “symptoms” often present as disorders. Which is why so many people are either never diagnosed or missdiagnosed.
Kades gross motor skill of walking was affected. Then there was his violent body tic. He also in my eyes had changes to his personality. He was less inhibited in what he said and to whom he said it. He would cross a line that he never used to before. He played his computer and would watch TV and play on his phone all at the same time. Was this a type of OCD? Looking back quite possibly it was. Compared to his most obvious symptoms the walking and the tic, these were also other highly possible symptoms that I noticed more in hindsight in the months to come. Another obsession he had was that he wanted his bedroom door shut. Normal for a teenager yes, however you could walk into his room and he would immediately say “can you shut my door”. He’d repeat it over and over. This also we noticed in hindsight was a possible OCD. There was also one day that the WiFi went down and he had a complete melt down, thankfully our neighbour let us use their WiFi. Normally Kade wouldn’t be impressed by a lack of WiFi however this reaction was extreme to say the least.
So keep your eyes open for other symptoms ones that may not appear as very obvious. OCD to me does not have to present as clearly as constant hand washing for example. Same with walking, Kades walking was a very obvious symptom where in another person their walking may only be affected slightly where they stumble more than they used to. It was after reading the book “Brain on Fire” I asked my son about his anxiety in the early days, I asked him why he has felt so anxious and he had explained that he was paranoid about people, that they were talking about him. So there was another symptom paranoia. It had been staring me in the face and I had mistaken it for anxiety. When I had asked my anxious child back in October 2015 what was wrong he just couldn’t put it into the right words. The other thing that always struck me as odd was Kade was never freaked out about what was happening to his body. To me this was another sign, I’m not sure what to call it.
These of course are just my observations. I just wanted to share them as I hope it helps others to see more clearly the possibility of more symptoms where professionals may miss them as they do not see the child/person as often so would not be able to pick up on them.
Those two days in the hospital were hard. The two hardest days of the whole almost 365 that my son has lived through battling this monster so far. It was only 5 days after Kades first treatment that he began to feel a difference in the strength of his body tic. Finally on February the 7th 2017 I was able to see that there was a chance at a future, at last.
Kade December 2016
Kades tic 3 weeks post IVIG