I have been waiting to see Lucys Endriconoligist and today was the day.
I am hoping to get her on to growth hormone treatment and that is not in question for her condition but the timing is as in this country it is not usually given until at least a child is 18 mths ranging to 3 years in many cases.
Lucy is the ripe old age of 16 weeks and I want her to start it yesterday!!!!
In USA they have been giving it to babies from diagnosis and these children seem to do so well.
I have looked up so much info on it and seen first hand photos of children doing very very well and I feel that Lucy is already missing out,she has very little upper body movement due to poor muscle tone and although those little legs are not too bad she cant do much till she can hold her head up.
Outcome of today was good..............Im not jumping up and down just yet as I didnt come out clutching a prescription for it but my lovely Dr Datta has asked me to send him some info on reported findings of early intervention.
I did have shed loads of info.......on my old computer!!!!!
I came home rang UK prader willi association they didnt have any info on early startso I rang USA and she emailed me lots of info from all over world and I have now sent this to Lucys doctor and that will keep him busy reading for the next week or so.
I am to meet with Dr Datta again as he has asked me to attend another hospital along with Lucy for research.
I was shown the injection choices and feel that I will go for the pen type rather than the syringe as it looks less scary and comes with different coloured cases (A must for any fashionable baby)
All in all I feel happy as it seems like Lucy will start her gh sooner than later