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Friday was his second day of plasmapheresis, he did very well however it's certainly starting to take effect, he's wiped out! It can make you chronically tired and just need to sleep, and with Cameron suffering from fatigue in the first place you can imagine how tired he is! Heather gave him a demonstration on how the heat sealer works, they use that to seal off all the tubing after treatment. After his central line is cleaned & sealed until Tuesday when treatment resumes. He needs the break to recover from the first 2, firstly it takes a lot out of him, but if they were too give it consecutively it could eradicate the clotting factors in his blood which would be very dangerous. So we are sitting tight in hospital till Tuesday. It's giving him the chance to rest & recover from the first two treatments and also keeps the central line nice & safe! We are hopeful the third and fourth treatments will be Tuesday and Wednesday, then we will hopefully get a slot in theatre on Thursday to get the line out and get home! We would love to make it down to the cottage for Easter, even if only for a couple days as we are off to Dublin easter Wednesday for a consultation with a new doctor who attended the conference last October and now treats PANDAS children :-) So Cameron made a little bit of history today, he became the first person in NI to receive Plasmapheresis for his condition, and only the 4th person in the UK. Basically the attacking antibodies that are wreaking havoc in his brain tend to reside or hide in the large proteins in his blood. The plasmapheresis machine separates the red blood cells and platelets from the large protein, discards this and replaces it with new blood product. He did very well, he's very tired and quite weak after it but this is normal as he's just had all his blood taken out, cleaned and put back in!! It may take a couple of weeks before we see any benefit. The major downside of this is that it's only temporary, his own plasma will start to remake itself, some children can become symptomatic again in 4/5 weeks, however keeping him protected from infection can play a big part in how long he gets out of this treatment. He will have another exchange tomorrow morning and then a few more next week, they cannot give them too close together as it could seriously compromise the clotting factors in his blood. We will be hanging tight in hospital as he has the central line in. We are hoping this treatment buys us time to get ourselves gathered for organising the post streptococcal blood panel, the Cunningham panel and the other tests he requires to start the process of getting our boy back! This is the machine at work! The separation process, the yellow bottles of new plasma and the huge bag of 2 litres of old plasma containing the bad antibodies!! Good riddance!! When we arrived in hospital on Thursday 20/3/15 we were told that treatment had been cancelled, there had been a change of plan, they were waiting to hear back rom Oxford regarding if IVIG would actually be the best plan. Devastated was an understatement! After being promised the sun the moon and the stars last Friday now they'd pulled the rug out from underneath is again and renaged on everything.......After the EEG they asked us to stay in overnight anyhow, so we were hopeful that maybe there was a chance for treatment on Friday. However it was not to be, this is my blog activity from that Thursday & Friday 19th & 20th March........ Best laid plans........... Received a phone call an hour ago to say our consultant had changed the plan now & was not going to go ahead with treatment today now, it's unclear if this is a funding refusal/red tape issue or not............ Yet again the NHS has built us up to knock us down again. I'm so relieved we went ahead with our fundraising because now more than ever I know that our path to getting Cameron fully well again lies in private care sourced outside of the NHS and this country. It simply cannot deliver, I'm sad to say, red tape & money/resources are stopping us at every port of call. We are going on in this afternoon for his EEG & we'll get to speak to the consultant in the morning. I'll keep you posted. Natasha xx Friday night 20th March We are home from hospital, without treatment and with a complete reversal on all promises to help that were made last week. Feel like I've been kicked in the ribs, feel like we've been marched right back to the start line...... Before we even got home from hospital he had gone into a full blown crisis, one of the worst ones we've had from last year. It took Mum, Dad & I to protect him from hurting himself, I had to sedate him in the end. His symptoms are continuing to return. Too full of emotion at the minute to process everything. So angry, so sad, so dismayed ....... But each time we are knocked back my fierce determination is fuelled, this disease picked the mum when it picked me - IT WILL NOT WIN. I will continue to fight for you Cameron, my beauty boy. 💙 xx Hospital update Cameron is on the emergency theatre list for the morning, he has to get a double lumen Hickman line in, the surgeon will decide where it will be located but potentially in his neck. This is needed for the plasmapheresis treatment he's scheduled for this week. The renal team from the city hospital come over to the children's hospital to administer this treatment. Basically his blood is removed through the line, the plasma is extracted and cleaned while a plasma substitute is put back in. Once the plasma is cleaned (the attacking antibodies are hopefully removed at this point) it is put back in to his body. He will be in for 10 days for this and is scheduled to have 4 blasts of treatment over the 10 days. We may get some 'home leave' in between blasts. However this all depends on IF there is s BED for him to go to after theatre!!! I will hopefully find out at 8am in the morning, the bed manager was contacted this afternoon but it all depends on how many admissions they have from A & E tonight. If he misses his slot in theatre in the morning due to no bed being available there are no more slots this week and it's back to the drawing board, and potentially doing the treatment through a series of cannulas in his arms, however this would be much more distressing for him so please pray we make our slot in theatre tomorrow morning!! We really need to start treatment this week, it's now over 3 weeks from the positive strep result and that's 3 weeks that the antibodies have been running loose round his brain attacking whatever they fancy!! This is a much more invasive procedure than he has had previously, it will be scary & tough for him, so keep us in your prayers. Off to pack our cases now! Nite nite. Natasha xx Blog update 13/3/15 So, we are heading back into hospital for more treatment, as soon as possible. Cameron, as you can imagine is extremely apprehensive! As our we, however if we wait on the blood results coming back it gives the antibodies a chance to establish themselves again in his brain and start another sustained attack. Starting the treatment right away we hopefully get a jump start on the bad boys! We came away feeling quite positive today, our neurologist seems to have taken on board his recent brain function results, recognising now that there has been neurological damage in his brain and decided she wants to try and be more helpful. She is very much constrained with what she can do for us on the NHS, the IVIG is the height of it but we are thankful for that because if we were paying for it privately it would be £30,000 per round!!! However she is trying to source a way of drawing the blood here to ship to Copenhagen, it will be private and will cost but she says she would like to try. She is waiting on immunology coming back to her over the weekend as the blood draw needs to happen before IVIG starts. Therefore we are up against the clock. She has also agreed to consult with immunology on trialing Cameron on the super antibiotics Augmentin & Zirithromicin, it's not a yes but it's a step forward past the previous outright 'NO'. Some PANDAS families are seeing real progress on these antibiotics. And she has agreed to do the EEG, which should have been done last year at the very start when he was critical & untreated, but I suppose better late than never. We have come to the island this afternoon to blow the cobwebs away and be by the sea for a few hours :-) Blog update 13/3/15 So, we are heading back into hospital for more treatment, as soon as possible. Cameron, as you can imagine is extremely apprehensive! As our we, however if we wait on the blood results coming back it gives the antibodies a chance to establish themselves again in his brain and start another sustained attack. Starting the treatment right away we hopefully get a jump start on the bad boys! We came away feeling quite positive today, our neurologist seems to have taken on board his recent brain function results, recognising now that there has been neurological damage in his brain and decided she wants to try and be more helpful. She is very much constrained with what she can do for us on the NHS, the IVIG is the height of it but we are thankful for that because if we were paying for it privately it would be £30,000 per round!!! However she is trying to source a way of drawing the blood here to ship to Copenhagen, it will be private and will cost but she says she would like to try. She is waiting on immunology coming back to her over the weekend as the blood draw needs to happen before IVIG starts. Therefore we are up against the clock. She has also agreed to consult with immunology on trialing Cameron on the super antibiotics Augmentin & Zirithromicin, it's not a yes but it's a step forward past the previous outright 'NO'. Some PANDAS families are seeing real progress on these antibiotics. And she has agreed to do the EEG, which should have been done last year at the very start when he was critical & untreated, but I suppose better late than never. We have come to the island this afternoon to blow the cobwebs away and be by the sea for a few hours :-) Hi folks. 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. Natasha xx This is the draft poster I have designed for fundraising events. Plenty of space for listing details, times & place of upcoming events. If you are planning an event, , contact me and we can facilitate you with some posters. We will have a short video coming soon that can be played at events as well, giving a little more detail of Cameron's story. |
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December 2015
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