Update on Cameron Remember - "A child with a brain injury carries all their broken bits inside." Therefore they may appear perfectly healthy and bright in their appearance, but remember a duck glides smoothly over the surface of the water, while all the while underneath the surface paddling away exhaustingly to keep themselves afloat. Life is like this every day for a PANDAS child. I'm totally spent tonight, the sleep is falling out of me but I wanted to try and give you a clearer picture of what's going on at the minute. Cameron has been much the same over the last few months, living on egg shells and having the same daily difficulties with life. However he has been enjoying being back in school for a few hours a week. Huge heartfelt thanks to Janet Broad for supporting Cameron & the family through this process! We couldn't do it with you xx At the minute he is physically in a lot of pain with his limbs, he has a lot of dizziness in his head and is having a lot of nausea. Food and restricted eating continues to a huge major daily distress for him. What happened today with the surgery? The original plan back at the start of October was, that after we had gone for a private ENT consultation (we would have had to wait 46 weeks for this appointment on the NHS), we would then also have the surgery privately as soon as possible in approx 6 weeks. However then the consultant told us that he could get us an NHS slot around the same time, well taking the NHS slot was a no brainier as it would save the fund £2000! In the car today, half way there we received a phone call to say that the present nationwide paediatric bed crisis, due to the outbreak of bronchiolitis, meant Craigavon were having to take patients from the Royal children's in Belfast and all surgeries had been cancelled..... The surgery could be rescheduled, possibly before Christmas if not the new year, however, we are coming into a bad time of year for health and this bed crisis could continue. Cameron could most definitely NOT cope with another cancellation (HE HAS REITERATED TIME AND AGAIN TODAY THAT HE REALLY DOESN'T WANT TO LIVE ANYMORE, no one can ever know what it feels like to hear your child say that unless your ears have heard it for themselves.....) so this leaves us with a dilemma - going back to plan A to go privately or taking another NHS slot and risking another postponement. At this point, after several phone calls today the surgery is most likely to happen between 16th and 18th December. This surgery has the potential to help Cameron immensely, it will not cure him, that's not possible (this condition is chronic). However there is also a 50/50 chance the surgery could put him into a spiralling flare as bad as when he was first diagnosed, due to the strep getting into his bloodstream during surgery. There is also a high risk that he will not cope with the post op pain or healing. USA have given us a treatment protocol to try and combat all this to the best of our ability, including our magic supply of expensive antibiotics! It's crucial that whatever is removed during surgery is properly cultured, as the results from pathology should indicate what strains of strep, amongst other things, are present in his body and then USA will then be able to match up a corresponding long term antibiotic for him. Things are certainly moving in the right direction, we are in a very different place compared to this time last year. However, without a shadow of a doubt I have found it terribly hard to keep myself afloat these last 3 months, it just seems to be one thing after the other being thrown at us. We are very concerned about Annie, she's had a lot to cope with and things have been tough for her. I've lost count of the times I have sat cradling her on the sofa as she sobs her heart out about everything. Our house is still not fixed, we will not be back into it until next year. Our temp house was only approved up until this week so we are on the move again! I'm starting to pack everything up and get ready to move house again next week! Hopefully we'll be settled in our next temp accommodation before the new surgery date and Christmas. I worry that my energy reserves are running on empty, the demands of this illness are relentless, sometimes it barely gives you a chance to breath and when you add life into the mix, well, it pushes you to breaking point. In fact it pushes beyond breaking point, as I myself have been broken several times over the last 2 years, but you know what, PANDAS won't win. I'm going to sign off now, but as ever we have to say thank you to you all for your continued love and support. It REALLY does make a difference to us. Natasha xx
4 Comments
Sarah Taylor
3/24/2016 09:17:07 pm
I have just watched your documentary on television and just wanted to share with you how it impacted me! I'm a doctor and have never heard of this condition, and can only imagine the heart ache of what you are walking through. However your amazing courage and absolute determination of attitude is truly inspiring. Being a Christian I pray complete healing over your son and continued strength to your family. Bless you all.
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Margot
3/25/2016 01:10:02 pm
I have just watched ch5 and the story of your lovely son and I can't believe this has happened to someone other than me. I use to suffer with a lot of tonsillitis infections and to this day (I'm 40 now) I can get a flare ups of the symptoms which Cameron is experiencing. I also developed aspergillosis and bronchiestasis - not sure if this is connected. I can only say that my symptoms got better as I got older. Keep the faith and if you ever do any further fundraising keep me posted-I will do what I can to help. Margot
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Lavinia McKee
10/19/2016 06:59:25 pm
Hi - I don't know if this will be any help to you - my son was diagnosed with Immune Mediated Encepalopathy. It is quite similar to PANDAS and was initially diagnosed as that. Connor took a sore throat back in 2008 - we noticed that he was forgetting a lot of stuff. I phoned his school to see if they had noticed anything and they said he had tried to hand in homework 3 times in a row. I phoned the GP who saw him and sent him to the Ulster Hospital. They did lumbar punctures, various tests and had not seen anything like him before. He was transferred to the Childrens at the Royal Victoria where is underwent various tests. His tests came back with antibodies in the Basil Ganglia. Connor had totally lost his short term memory, had a slight tic, personality totally changed. He was referred to Birmingham Childrens hospital and was eventually diagnosed. Connor spent 2 months on high dose steriods and 6 months on immunoglobin treatment. We noticed a big difference within those 6 months. Connor is now 19 and thankfully he has regained his short term memory back - he had classroom assistance right the way through grammar school but managed to achieve excellent A levels. I know what you are going through - we spent quite a few years seeing doctors and clinical phsycologists but I must say the Royal was brilliant. Connor still has to take antibiotics if he feels the slightest sore throat coming on and we always have a stock on hand. I really hope and pray Cameron makes a full recovery and has a long and happy life in the future xx
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Natasha
11/18/2016 03:26:14 am
Thank you so much Lavinia for contacting us, I appreciate you taking the time. And I really do find your story reassuring! May I ask who you were under at the Royal and who prescribed you the antibiotics? We cannot get prophylactic antibiotics for love nor money and Cameron has just been confirmed strep positive for the 4th time in 6 months, he desperately needs to be on them! Xx
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