Cystic Fibrosis, Family

The results are in…..

Just to let you all know Joe got his results from his annual review and they have all come back clear! YEY! His lungs look normal, his liver and kidneys are still functioning well and they are very impressed at how much weight he has put on and how much he’s grown! (Rob did say “did you tell them we feed him pots of whipped cream for snacks and that’s why he’s putting on weight?!” But somehow I forgot to mention that snippet of information!!)

They did say that initially they were quite worried about him because he kept having infections and he was growing a bacteria in his lungs that they couldn’t seem to get rid of but now he is doing great and its been months since the bacteria has shown up on his cough swabs so they are pleased at his progress.

They have even said that he no longer needs to have gaviscon in his milk now that he has solid foods and we are trialing reducing his dosage of domperidone also for the same reason. He has been sick a couple of times this week so we will keep a close eye on it.

joe in pushchair

No week is without its challenges though and now we are having a few problems with our G.P and chemist. Because Cystic Fibrosis is a reasonably rare disorder (only one in two and a half thousand people have the disease) we were warned by our paediatrician that we may come across some difficulties with G.Ps as often they may never in there lifetime come across a patient with CF or if they have it may have been years ago and the treatments change so rapidly that they will be very different from even 2 years ago. Because all CF patients treatment is done through the hospital also the G.P does not get much experience of the disease which I suppose creates a cycle of mis-information etc.

2014-06-01 14.06.46

Joe has been prescribed salt solution due to his inability to hold onto salt during the summer months. We got our first bottle from the hospital pharmacy no problem, but when I came to reorder it from our local pharmacy on repeat prescription he said that the G.P had put a note on Joe’s record that he is not to have it and its being investigated. I subsequently brought in two letters from the hospital explaining why he needs this medicine but they have said it has gone up to prescription management for investigation as they believe he shouldn’t be given this much salt.

I know this is because in other babies so much salt would be very dangerous but if the specialist consultant paediatrician prescribes it, and then checks and confirms the dosage twice surely that should indicate it is correct?! It’s difficult not to get really frustrated because its hard enough organising and administering all this medicine and treatment as it is without road blocks being put in the way by G.Ps! GAAAAARRRRHHH!

Sorry- rant over.

So hopefully it will all be sorted by next week otherwise it will be time to contact the hospital and lots of salty chips for Joe!

hope everyone is well!

Love Rach, Rob and Joe xxx

 

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