Change of plan

Well things have all changed again for Charlie he had a confirmed diagnosis yesterday of combined immune disorder this is a primary immune deficiency it means he has low levels of antibodies and he doesn't respond to vaccines as healthy children would so he is still at risk of childhood diseases eg measles etc even though he has been vaccinated against them. It also means he is very at risk of infection as we are already aware from all the infections he has been getting and also infections from cuts etc if he falls over. He also has stomach problems which they have told us are related to the immune disorder. He has just got over pneumonia and a double ear infection and now his cough is back and he is growing the bug moraxella cattahralis so is on an increased dose of oral antibiotics and has also had a stronger antibiotic added in to try and give him a boost. He will be starting immunoglobulin replacement therapy next week at st Marys hospital this is the plasma which is taken from blood and is then refined and treated so as it doesn't contain any viruses etc. It is an extremely expensive treatment to be given and needs 1500 people to give blood to obtain one treatment dose of infusion. So we are all hoping this really helps and the immunologist and infectious diseases doctors at st Marys really think it is going to help him so please keep everything crossed. His blood tests he had done have shown deficiencies throughout the whole immune system rather than just one part of it. He also needs another c.t scan as from the last x ray his lungs look rather bad like that of a t.b sufferer i was told yesterday but this is hopefully not a true picture of them so we have to wait until after he has started treatment and is much better then the c.t scan will be repeated to try and see the true damage that has been caused to them. As I say he will begin the infusions next week and then will have a protocol and all the other bits and pieces he needs to try and give him the best care possible.

We got taken up to the ward where he will be and were going to meet the specialist immunology nurse she was at a bone marrow transplant meeting so unfortunately we were unable to. They are going to fit him in on a quiet day next week so we will be able to meet all the team and go through everything, ask any questions we want answered and just get to know how it all works etc. The doctors i saw yesterday were all very nice and did their best to explain to me what was the matter with charlie and why it was caused etc they drew diagrams and everything and they gave me a very quick science lesson on the immune system and also said that there is so much of it that they don't yet understand. There were three consultants all telling me things in a very short time so it was a little overwhelming. Anyway after we had finished there and had been given a tour of the ward and got his medication from the paediatric pharmacy it was time to get the train home and go straight to our local hospital for an ENT appointment where they were deciding whether or not to take his tonsills and adenoids out and put grommets in so he has gone on the list for that and it should be done by the end of January so hopefully that should make a difference as well. That's really about all the news i have at the moment everyone else is fine just worrying over Charlie I will blog again after Charlie has had his first infusion and we know how he's reacted to it.