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Hi, my name is Rebecca, I am mum to Chloe (5). Chloe was diagnosed with IPAH in April of this year at Gt Ormond St childrens hospital. She is currently being treated with Epoprostenol via Hickman line, Bosanten, Sildenafil and diretics. It has been a very emotional year for us as a family and also a masssive shock. Our problems all started in Feb 08 when we noticed Chloes lips going blue+complaining of "i'm out of breath"...our GP originally diagnosed Asthma and prescribed chloe with an inhaler but it didnt improve any of the symptoms so we were sent to our local hospital for an "MOT"....this is where the real diagnosis was revealed. After an ECG and ultrasound, chloe was sent to Gt Ormond street for imitiate treatment which first consisted of just oral meds...these proved ineffective after just 5weeks when her pressures were up to 105. So she was fitted with a hickman line 4 weeks ago and so far so good! Chloe has a little sister called Brooke (9mths) who was screened last week and got the all clear!!!! Thanx for reading rebecca xx |
