Hello my lovely peeps
Well we are back from London - oh and what a faff! LOL I like that word - well it's hard to explain but it was like getting blood out of a stone talking to those doctors! It really annoys me - they seem to hold info back or they dont know what they are talking about.
The upshot is that Sam IS growth hormone deficient and apparently I was supposed to have had a letter to tell me that officially - I never did get that!
Anyway, then she says that when Sam had his first lot of tests he was supposed to have had a primer or something (Jeannette what does that mean?). Anyway, it was some sort of tablet he was supposed to have and he didnt which meant the tests werent accurate or something - didnt really understand as the doctor was not speaking good English - and was very quite in her voice - mumbled alot! Anyway, I got all confused - but then Mr Stanhope (the consultant) came in and he explained to me that Sam's pituatry gland is fine (cant spell that), and I said then why is he growth hormone deficient and he said that it can just happen. (You see Joe's pituatry gland is abnormal). Anyway bit complicated to explain but Joe's is more complex than Sam. So Sam's growth hormone is ordered and she said - you go to the GP for the growth hormone and I said what all of it and she said yes and I said I dont think so. She looked confused - and I said No I only get the growth hormone from the GP - I said dont you have to sign Sam up with the pharmaceutical company so they can send a nurse out. She said oh yes I think I do - flaming hell - she should be telling me that!! Now if I didnt already have a child who was growth hormone deficient I wouldnt have known would I!!! Then she said to me that Sam will have growth hormone til he is 16 so I said right so he will only have it for two years - I said surely thats not long enough then she says oh no it will be 18 - she had meant the bone age - blimey they just dont explain stuff!! I feel a bit in limbo now - Im not sure if they will contact the nurse. Oh this will make you all laugh - she said to Sam - how would you like to inject yourself - well how the hell would he know!!!! That made me cross - when Joe was diagnosed we saw a nurse and she explained all the possibilities - showed us all the pens and the injections - she didnt do that with Sam. So I said well Im used to the pen that Joe has and she said to Sam will that be ok Sam - and I said how would he know he isnt Joe!!! OH dear sorry I went off on one then didnt I! It probably doesnt make any sense at all! I might phone up Mr Stanhope and talk to him about it - the growth hormone will be available at the GP in three weeks time - I dont know if the doctor will contact me or not and also I need to get the nurse from Ferring (the pharmaceutical company) to come along when the hormones are ready so she can show Sam what to do. She also needs to bring the pen and all the stuff that comes with it. Blimey think I will need a bigger fridge with all that growth hormone!
Phew sorry had to get that all out it probably dont make sense!!!