more information about lily.

[Guest guest]

hi everyone,thank you for your replies.I was very plesantly

surprised.

Lily was born last October wieghing 4lb 11oz and just 2 weeks

early.Noone could explain why she was so small but said she was fine

and would catch up.She didnt and after seeing a couple of different

paediatricians we eventually saw one who was concerned about Lily

and got us to see a genetics dr who diagnosed her as RSS.She now

weighs 13lb and is about 25inches long and is 14months old.She has

polycose powder in all drinks,has infatrini milk,has calogen calorie

medicine and all food high in cals.she eats just ok sometimes and at

the moment she will not eat at all,she has been like this for about

10days now.I have arranged for her dr to contact me tomorrow as we

dont know what to do next re tube feeding.The dietician has been

helpful but we feel most of the professionals are clueless.I have

asked the dietician about appetite enhancers but they say there is

no such thing, and the genetics guy says that she will not benefit

from growth hormone as Rss children do not lack it.!!!!We have an

appointment at the end of the month with an endocrinologist so lets

wait and see.....Also Jody, Liam is on losec,why? I think that Lily

sometimes has some gastric problem when she goes though her not

eating phase. She tries to make herself sick by putting her fingers

down her throat even after one spoonful,or she will eat a small

amount and then just vomit or eat a few mouthfuls willingly then

appear to be repulsed by any more,sometimes unable to tolerate

mildly lumpy food then a week later eat anything. is this typical

RSS.I hope this is enough to be going on with and sorry for going on

but what a relief!!!! by the way we are in the UK, sheffield.and

have a son called joe who is 4.