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!!!
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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. A fantastic morning spent at the local fire department! Smiles all round, really really good fun!! Many thanks to Fire Chief Dan and the guys at station 68. # UPDATE # Be prepared, it's a long one!!!!! Yesterday was a really really long day, we were left very drained and exhausted. By the time the film crew were finished with us we just needed to close our eyes! We had a productive day with Dr T, we didn't get all the answers we were looking but we got enough answered to formulate a treatment plan of action. - Cameron's strep levels are still sky high! Over 1100! They should be 200 or less (they were 1400 when he was diagnosed). This means he's a chronic strep carrier and despite the plasma exchange treatment at Easter he has come back into contact with strep and taken another relapse. The treatment plan proposal for this is urgent removal of the tonsils. We know this is where the strep hides in Cameron, several swabs of his tonsils have come confirmed this. However, this can be a risky step - removing the tonsils can release a whole raft of stored bacteria into the blood stream and trigger a very nasty downward spiral in the child. It therefore, needs to be strictly managed by strong antibiotics just before and immediately after surgery to try and counter act the risk of a serious flare. Once removed the tonsils are then cultured in the lab to see what's growing on them. The tests on his immune system show this is badly compromised. The levels of some of his antibody army are some of the lowest the lab have ever come across. Dr T feels Cameron is most likely not making any of these antibodies. The only solution for this is to treat with more IVIG, which will infuse the required antibodies into his immune system. He has recommended at least a year of IVIG treatment after the tonsillectomy. He will require treatment with super antibiotics, however which ones will depend on what the cultures from his tonsils show. The results show that Cameron's condition is most definitely strep driven, which is as close to conclusive proof of PANDAS that you can get at the minute. We will need further testing to get to the bottom of his joint pain, this is as debilitating as his other symptoms, it has worsened over the last few months and yet no one can offer us an explanation for it. We had hoped to get the PET brain scan for Cameron while we were here, but unfortunately this will not happen. We are keen to get this in the hope it will shed some light on the neurological damage Cameron has suffered as a result of this condition. The world renowned (in this field) Dr Chungai is unavailable the month of August and then is moving his practice for Detroit to Delaware. Dr T thinks this brain scan would be very beneficial to have, however it's an extremely complicated one to set up, involving radioactive material. It can take months to organise. If Dr Chungai can recommend someone in the UK or Europe then it will save us a trip back to the U.S. for it, however the type of one Cameron needs may require a trip back. Would he maybe take us ok a quick monsoon . We now have a plan of action, HOWEVER......... It will rely on our medical team back home taking on board the recommendations of Dr T. This may be much more difficult than it sounds!!!! He has also given us a list of further testing he would like done, I will be emailing our GP about these, he has been very on board so far with us, here's hoping he continues to be! It's important to put this visit into perspective - it gives us a certain amount of answers & clarification, however, this is only a stepping stone. As Dr T said today, we are still quite early in our journey and still have a considerable road to travel. Today gave us confirmation of PANDAS and ruled out other things. Dr T did confirm that Cameron was certainly right up there with the worst cases he's ever come across. Where we go from here will now depend on the response we get from our medical team back home. As we feared, the treatment needed would be cost prohibitive in the U.S. and require co-operation from the team in the UK. Each month of IVIG, because it would be an intense dose he needs, would cost around $10,000 and be would need that for a year!! That's not even adding up the cost of the surgery to remove the tonsils! Dr T will be sending a report to our neurologist in Belfast and hopefully she will be able to get approval for the treatment required. To have to obtain this treatment in the U.S. Would put us into a whole different level of fundraising! There are certain doctors that will consider you as a 'charity case' over here, but that would be if we were refused the treatment recommend by Dr T. We left Dr T's office today with a script for antibiotics, 10 days now to try and reduce the 'off the richter scale' strep levels, 10 days before surgery and 10 days after. Next step - an email off to our neurologist's secretary tomorrow. How do we feel? I think we feel satisfied with the day, we knew we wouldn't get all our questions answered, as he needs to see what some of the results showed before deciding where to go next. We feel happy with the plan put in action at the minute. We are under no illusion we still have a fight ahead to achieve our next goal. So please do keep us in your thoughts and prayers, we will need them to get to the next step. Thank you Natasha xxxx Dear love him he's beat, the travelling really does take it out of him. In the waiting room to go in to see Dr T. Well we are nearly on our way, Cameron is having a doze before boarding. I feel nauseous, nervous, anxious, you name it I'm feeling it right now! Goodness I hope it all works out, so many people have done so much to get us here, there's so much riding on this trip. Folks I'm so sorry I haven't had an update in a while, I promise you I'm working on it! I spent 2 hours on one in France and Facebook wiped it on me!!! I've barely been keeping my head above water this last while! We are at the airport and the nervous knots are back, there's soooo much riding on this trip......Xx |
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December 2015
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