Hi, my baby now 7weeks was born with a rash over her face....6hrs later she was diagnosed. We had no idea that my Sjogre.ns Syndrome could have such a devastating effect on our baby. We had 2 boys previous to her and there was no sign in them, so this has come as a big shock. Chloe has a very light butterfly mark over her cheeks, nose and around the eyes. She also has little dots on her temples and large areas of pigmentation around her neck. At 2weeks she came out in the typical lupus rash on her tummy which are not cermetrical and clear on the middle. We live in Australia and theres not much know about this.
Recently she has had terrible reflux and blood in her stools. She was hospitalized and formula changed. Her red blood cell count dropped dramatically however seemed to recover. The blood dissappeared with the formula change however this week its started again. We've had blood tests today.
I was wondering if anyone else has experienced this problem.....Chloe also has low platelets and her liver function is still not what it should be. Her heart appears fine on the echo and ECG's.
I was particularly interested to talk to Presleys Mum. I watched her videos on You Tube and was deeply touched. As this is all so new to me and we are only 7weeks into it, I am information hungry.........although I realise that sometimes too much info is a bad thing.
But otherwise I would love to hear from anyone with experience with this and wondering how long others took to recover.
Ginamaree
Australia
Recently she has had terrible reflux and blood in her stools. She was hospitalized and formula changed. Her red blood cell count dropped dramatically however seemed to recover. The blood dissappeared with the formula change however this week its started again. We've had blood tests today.
I was wondering if anyone else has experienced this problem.....Chloe also has low platelets and her liver function is still not what it should be. Her heart appears fine on the echo and ECG's.
I was particularly interested to talk to Presleys Mum. I watched her videos on You Tube and was deeply touched. As this is all so new to me and we are only 7weeks into it, I am information hungry.........although I realise that sometimes too much info is a bad thing.
But otherwise I would love to hear from anyone with experience with this and wondering how long others took to recover.
Ginamaree
Australia