Just to give you an update on where we are after the recent test results.
Firstly thank you sincerely for the tremendously generous support we have received from the UK and beyond on our 'GoFundMe' page. Thanks to the donations I have just made an appointment with a specialist in Dublin who is now treating PANDAS and who works with the brilliant Dr Somnier in Copenhagen. This is the first step to getting the essential testing done that we need. We go to see him at Easter :-))
Where are we medically?
His strep titer levels are back and they are high. Unfortunately symptoms we haven't seen from Christmas have been returning on a daily basis from the weekend. This is very concerning. It indicates that the basal ganglia antibody levels are on the rise again and launching a new attack on the brain. Part of last week's blood tests is a specialised one that detects these antibodies. Unfortunately we won't know the results of this test for 5-6 weeks! And at the minute Cameron's blood is still sitting in the lab in Antrim as neurology at the Royal have been ignoring both our GP and us for a week now! And the sample can't be sent to London without their say so. Rest assured when I got speaking to an actual human today instead of an answer machine I did not miss them and hit the wall! If the test comes back positive it means we are back into hospital for more treatment, in trying not to take my mind down that road, as it's all so freaky time wise, it was March & April last year we were in hospital, I spent Mother's Day last year being violently attacked by my precious boy who was in so much pain.........
I must admit, last year when we were told this would be a long road I honestly did not comprehend just what that meant, it is a huge challenge and it's very much a long haul. It's something that has changed our lives forever, our world will now forever be post PANDAS.
However seeing how the fundraising is taking off, seeing the support that is out there for us is definitely giving Jonathan & I the strength we need to tackle the next stage of this journey.
Godbless & thank you.