Update on Cameron - 17th May 2015
- update on his medical status, neurological damage, current treatment plans, education, USA trip & fundraising.
This is a long one folks, you'll need a good 10 mins to read it but I've opened up about things I have not done previously so you may find it interesting.
This update contains some details that we have not shared as frankly on the blog before, but in order to raise awareness of this condition and what PANDAS parents have to deal with behind closed doors we think it's important to disclose more details of our daily fight.
It's now 7 weeks from Cameron had the experimental plasmapherisis treatment - where his blood is removed and the plasma extracted and disposed of, this is because the antibodies that attack Cameron's brain hide in the large plasma in his blood. So the thinking is remove the plasma remove the antibodies. Donated fresh plasma is then added to his blood and its all returned to his body.
The treatment took about 2 weeks to kick in, at first we thought it had made no difference, however we then began to see a noticeable reduction in a few of the severe psychiatric symptoms. Namely the aggression and violence toward us and Annie, and the self harm/suicide attempts. In the space of 3 weeks I was only beat up once and he only vocalised twice a wish to kill himself, a marked improvement on pre-treatment. It's very important to realise the part of his brain that has been damaged by the attacking antibodies reacts in this way when everything becomes too much for him, and by everything I mean just daily life, errands, school run, family conversation & interaction with people or get togethers etc. It's not necessarily that he sincerely wants to die or to hurt us it's that his brain simply can't absorb and cope with many daily activities we take for granted, dressing, eating, showering, shopping, packing a bag, doing academic work, never mind when life throws him a curve ball! We frequently hear people say how well he looks, and while this is true, compared to what he looked like when he was critically ill last year, appearances can be deceiving. PANDAS children are classically known for being able to hold things together in front of people or for doing a short task and then falling apart for hours on end at home. The longer they 'hold it together' the more severe the fall out is when their brain reaches maximum absorption. That's when things get dramatically upsetting, sometimes we are required to restrain him for hours, to prevent him hurting himself and us, to put the house on lock down and hide the knives and sharp implements. It's a vicious circle - his brain is done & tired so he starts to get distressed because he finds doing things hard, this makes his head hurt, the pain in his head increases and so does the distress, as it all rises it gets to breaking point and into free-fall he goes. A PANDAS parent literally has to second guess every thing the do and say all day, from clutter in the living room, my reactions to stressful situations (he is super super sensitive to that!) to which side of the road to park on knowing if it's difficult to get out again across traffic he'll end up in hysterics and go into free-fall.
His mind seems continually preoccupied with thoughts of death, doom & gloom, you feel like you're constantly having to reassure him that it's ok, he's safe. Some of all this did seem to be generally more levelled for a few weeks. For about 4 weeks life was a little less 'walking on egg shells' than normal, which was good.
In a blog update in March, we had just been discharged from hospital the day after he had his EEG, I stated he'd had one of the worst crisis episodes in months, we could only get him as far as mums, it wasn't safe to take him any further in the car, I told you how I'd had to sedate him in the end. I'll give you a little more detail of that day. It started because he was panicking about how his Xbox was going to get from his house to my mums as he didn't want someone else packing it. He was already very upset that we'd been sent home with no treatment and basically his brain could simply not cope! Within seconds he was in major crisis, I was getting badly punched on my right arm (I couldn't lift it above shoulder level for a week after), he was trying to strangle me. His distress levels were off the Richter scale. We managed to get to mums, he fell apart when we got in, he was banging his head off the walls, he collapsed to floor and started banging his arms & head off the floor tiles screaming he just wanted to die, that he just couldn't take it all anymore. Then he got up and went for the knife drawer, it took 3 of us to restrain him. I then started getting kicked while dad tried to restrain him, mum had to walk out and upstairs she was so distressed and it's not good for him to see you distressed. I managed to get his meds made up, by this time he was on the stairs but was refusing to take them. I knew he just needed sedated, his wee brain just needed relief for a while. He was sobbing his heart out, I was breaking my heart on the inside while having to remain calm and gentle with him (that's so crucial, you must must be gentle with him when he's in these crises, it sounds strange but the more aggressive he gets the more gentle & calm you have to be!) I finally got his meds into him and he's sitting on the second stair sobbing quietly looking at me and he says "please mummy just stop fighting for me, I can't take it anymore. Just stop fighting for me"..... I will never be able to put into words what that felt like to hear, I swear a piece of my heart actually broke that day. I told him I was sorry but that I would never stop fighting for him. He stayed at mums and slept for 5 hours that afternoon, I went out that night to a birthday party and tried to smile....
Interestingly some things have got worse since treatment, we aren't sure if this is because the treatment is more invasive and severe on his system.
His headaches, his pain in his legs and back and his dizziness have all got worse, some nights he can't get up off the sofa with his head. His brain sequencing has also noticeably deteriorated. Issues over food and eating are also proving a major daily trigger. How sore he gets is directly related to how much he does, if he's had an active day both physically and emotionally (meaning he's had to interact/fiction around/in front quite a few people) then the next day he'll be floored!
This plasmapherisis treatment is only temporary, his blood only remains clean until the antibodies start remaking themselves. There is no data or info on a standard time for how long each child sees the benefits of the treatment, mainly because of the combination of recently recognised illness and even more recent treatment for it. Neurology at the royal class it as experimental as there is no data available on it, it's been used 4 times inc Cameron in the UK for his condition and never before in Northern Ireland so it's very new territory for them!
However, the good news is as we were able to report improvement with it we will be able to have more of it :-) we hope to fit another round in before September, but we need to be in hospital for about 10 days & he has to go to surgery so it's fitting it in round plans for USA. We can't have anymore before we go to the USA as his blood needs to be dirty for testing.
Where are we with this?
Well we have been furiously fundraising to make this happen along with half of Northern Ireland! For which we are eternally grateful!
We hope to be going to the USA in July/August, date to be confirmed. As his blood was cleaned in March we have to wait until this has totally worn off before he can undergo the complex tests to find the brain markers that we need to isolate. Normally this takes about 3 months to fully leave your system (even though symptoms may return before this).
We are going to do our best to make USA happen before the school term starts in September. We have been told Cameron's educational statement should be through before the end of June and apparently it's going to recommend attempting a re-entry to school for a few hours a week with a classroom assistant.
In order for him to have the best opportunity to manage this it's crucial he's on long term treatment by then. We are under no illusion that as he is no different medically to last September (if anything certain things are worse now) an attempted restart to school could rapidly deteriorate things like last autumn.
Unfortunately there appears to have been no change in the neurological damage he has suffered. Last year when he was first diagnosed and we started researching the condition we became very aware of the possibility of long term/permanent brain damage in cases as severe as Cameron's. It was something we were always worried about at the back of our minds, because we knew there had been a delay in initial treatment. It's impossible to know if this will be permanent or not. And we won't have that answer until we start trying to rebuild his brain. However we can't start the rebuild until we treat the condition!! Dr G in Dublin informed us of a very successful music therapy programme in Toronto that's showing great results in helping people regain brain abilities.
This damage is probably one of the things that distresses Cameron most, he keeps asking "will I ever get my academic abilities back mummy?", all I can answer is "I'm certainly going to try everything in my power to make that happen pet!"
The brain function testing Cameron has had shows that as it stands at the moment his scores in - short term memory, working memory, verbal recall, verbal recognition, verbal processing, brain sequencing & general processing speed & ability are all in the 1 percentile - for a grammar student of his age he should be in the 83rd percentile or above!! This is significant damage and if he was not able to rebuild any of these skills this would have a serious impact on the rest of his life.
For a boy that was used to getting all 'A's in school and had a thirst and great ability for learning it's an incredible shock to the system to no longer be able to function in these areas.
We go on Thursday for a parent only consultation to discuss the future as regards his neurological damage, which I must admit I'm not looking forward to.....
Sadly we are starting to see 'bad days creeping in again. Anecdotally 5-6 weeks does seem to be all you get out of it sometimes. This last week has had more crises in it than the last few weeks combined. However we aren't completely back to square one yet, he had 2 really good days Friday and Saturday, you can't help but smile on these days because it's so lovely to see him not in as much pain due to daily life - be it physical pain in his head & limbs or emotional pain due to life demanding too much of him. And then you wake up this morning and that's gone. As soon as he gets up the distress is immediately evident......
The next 6 weeks are jam packed full of fundraising events (I'm putting an event schedule up on the website this evening), culminating in our grand gala evening at Theatre at The Mill in Friday 26th June, tickets are now on sale through box office :-)
We will never ever be able to express the heartfelt gratitude Jonathan and I feel for the community support we have received through all this! Really the response from people has been amazing, their kindness & generosity continues to surpass anything we'd ever envisaged!
Thank you doesn't seem nearly enough but we'll say it anyhow, thank you!
The publicity we have received and continue to receive (the lovely Victoria Leonard from Larne/newtownabbey times continues to follow our journey and we are doing an interview with the Sunday Life this week) is certainly great for raising funds but something that's just if not more important to us is that the publicity had started to raise awareness, and that's the key to getting the necessary protocols & guidelines put in place for treatment of this condition in the UK to become a reality in the future. It's not going to happen tomorrow or next year but it will happen, through the power of parents and children. Cameron's legacy of the official 'Cameron's PANDAS Fund" charity will hopefully make the journey a little easier for future families than it has been and continues to be for us.
Thank you again for bearing with my long updates, but this condition is not simple and plans & info tend to get quite complex!!
Thank you for your unfailing love, support & prayers. We really do feel them.
Natasha & Jonathan xx