hiya hannah my lil boy as just been diagnosed with infantile spasms.. he has downs and had a full repair 2 a vsd in april x

Hi hannab.  Just wanted to say hi - shouldn't stay long - i'm supposed to be working!

My little girl eleanor ( 1 next week) has West syndrome secondary to a brain haemorrhage she had around the time she was born.  She is hemiplegic and has a visual field problem and goodness knows what else that we won't know till she's older.  I don't know exactly what you are going through, but i know enough to know it's cr*p.  how is your little boy doing with the Wests?  have they managed to control it?  There is a reasonable support forum infantilespasms.com/forum - it's a bit american, but as long as you can get over that. i think it has a bit for TS and Wests. 

just wondered if there were any parents who had any children who had any of these conditions? my son harvey is 10 months old and has all 3 and also has a heart condition called wolff-parkinson-white syndrome.

Just lookin for parents who know what harveys going thru and just for a chat and support and share stories

hannah xxx