At the European PANDAS Conference - Immersed in a huge caldron of PANDAS knowledge, listening to the leading doctors on this condition including the lady who discovered PANDAS, Dr Sue Suedo.
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After the roughest week we've had in quite some time, including our precious boy being in such a state of distress he tried to open the door to get out of a moving car. He is having a very good day, we have had a lovely laughter filled couple of hours at Pickie Park Bangor and now catching a bite to eat in Cafe Brazilia. It should not be underestimated what an achievement this is for Cameron, it seems ordinary enough but for him a trip out like this is filled with mine fields and hidden distress. It will take a lot out of him as he's very sore physically at the minute, but his laughter & enjoyment is lovely to see. Very thankful for a family afternoons like this, God Willing we are granted them more frequently as Cameron's health improves I'm wound like a tight coil today, feeling very stressed. Cameron is finding everything such a struggle today, it's all so intense, it's exhausting! Words that pop to mind today - overwhelming. Daunted. Drowning. Tired. So the outcome of falling asleep on the bed at 6.30pm and not waking till 12 midnight on Jonathan's night off? Everyone's now fast asleep and I'm up half the night composing and updating word documents & sending the latest list of email correspondence to doctors, clinics & folk in Oklahoma, New Jersey, Toronto, Italy, Dublin, Galway, Belfast Royal Children's hospital and templepatrick!! Reading this causes physical pain in my heart as I scan the lines thinking the author is reading my thoughts xx We survived the trans Atlantic crossing! Just!! We welcomed the sight of the special assistance Omniserv team at Heathrow with open arms! They really show up their colleagues in other airports with their first class care. As usual they came on to the plane to get us and made our transition through the airport stress free. Cameron is quite volatile, he's in the seat and buckled in, which is progress! Now waiting to take off for good old Ulster. Roll on home - family reunion at the airport & then off to our temporary accommodation to sleep off the jet lag, before picking myself up and getting on the ball with the next stage of treatment. Dr T & I have already got things underway and I'm eager to get things moving. On route home, Cameron not doing well, the airport has been a nightmare. He's in freefall, I have him heavily medicated and am PRAYING he settles for the flight otherwise it's going to be a tough one...... It's not often I'm rattled but I'm rattled now.... Precious Annie is doing her best to help dear love her. It took us an hour to check in, they gave us an awful grilling about his medical status, que a 35 minute phone call to their doctor trying to explain his condition and reassure them he was fit to fly!!! Very mixed emotions today with all the photos of children off to big school. Cameron should have been starting 2nd form....... This photo was his 11th birthday a few weeks before Cameron started to suffer early pre-brainstorm symptoms. This birthday marked the start of his spiral down into the PANDAS nightmare that has left him struggling to cope with everyday life and all that it demands of him. Tomorrow he turns 13, when this photo was taken we had no idea the journey life was going to take us on over the next 2 years!!! This weekend, thanks to the sincere generosity & kindness of our Canadian family & friends we will spend his birthday at a beautiful lake house. On Sunday Cameron & Annie will get to go to Niagara Falls for their birthdays. I hope and pray that this birthday marks the start of another 2 year journey, Cameron's journey toward health & healing, our family's journey toward healing. Thank you for your support and taking the time to read my posts, especially the ones where I'm feeling extremely sorry for myself! Which are normally late at night when I can't sleep for my mind racing! Anyhow, thank you. Natasha xx My boy, the summer before he took ill. It's 4.20am here in Toronto and I'm lying in bed wide awake. My eyes are stinging with tiredness but I can't seem to get them to stay shut, I long to just drift off I can't get my mind to switch off. I'm listening to my boy crying, distressed in his sleep, as he is every night. And I worry what's tormenting him in his sedative slumber. There has been a noticeable dip in him this week. We are very concerned that with a planned part time re-start to school looming he will start to spiral if it's as hard for him as last year. He's currently in no state to cope with school!! So, we are going to ask our neurologist back home if she will approach the UK immunology centre in Oxford and try to get another round of plasma exchange approved as soon as possible. It gave us good results at Easter and we feel it's worth a shot to stabilise him in prep for an attempt at school. High on the priority when we get home are sone private consultations. With an ENT doc to arrange urgent removal of tonsils before winter sets in. And also with a rheumatologist, for his debilitating joint pain, other possibilities have been ruled out from the testing, it's common for children with auto immune conditions to have rheumatic problems, especially with PANDAS. And in light of Cameron's vicious motor contortions at the start it wouldn't surprise me - I used to watch him writhing in excruciating pain, watching the vicious monster in his brain turning & forcing his limbs in directions they weren't meant to go in (!!!) and wonder if it was doing any damage to his joints. The music therapy clinic here in Toronto have advised us that they certainly feel they could be of help to Cameron but that it would be when he's back at baseline, with strep levels under control and coming out the other end of treatment. I admit, we took the decision to fly on up to Toronto at our own expense hoping against hope that they could have been of some help to him now before he tried school again, but at least we tried. I'm feeling very overwhelmed at the minute, we are still homeless, we will be going home next week to temporary accommodation as the repairs on our house could take some time. This is unsettling for the children, it's going to mean battles with the insurance company and stress dealing with builders & repair guys! There is still a lot to plan for Cameron's school re-start, Annie starts a big year in school and we are under a lot of pressure to get Jonathan's dad's house cleared & finalised..... I'm lying looking at this photo recalling my boy back then, how handsome, smart, confident and outgoing he was.........memories, comforting but painful. 💙💙💙💙💙 Ready for the second leg of our journey - Toronto, Canada. Staying with our fantastic Canadian cousins while visiting the therapeutic listening clinic for children with acquired brain injury. |
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December 2015
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