DD is 12 month. Since she was 2 weeks old the blood supply has cut off to her limbs at various times. It used to be just on the left hand side, then went to both and now predominatly on the left again. The supply has cut off completely on 3 occasions and her left hand and arm have turned black for a couple of minutes before the blood supply returns.
She also gets blisters on the end of her fingers and they are constantly red at the tips and sore. She now changes colour at random times like when she is eating or more worringly if she turns on her left side in the night her left hand will start to lose blood supply and turn black.
She also doesnt wee much so they think that the vessels around her kidneys might not be opening enough and she falls over a lot mostly to the left to. The weird thing is she will have a couple off weeks where she might not change at all then times when she could change 5-10 times a day. They also dont think she can feel heat in her left hand.
The consultants are confused. her blood results show her blood clots to easy but they dont think this would cause this. She is on blood vessel opener and asprin. The consultant put her pictures and info on a forum for america and europe and someone from germany believed it may be familial chilblain lupus.
However results back and it is not, and they now want to more tests. Just sick of not knowing what is worng and worrying. I just want a diagnosis. I had a thread going on childrens health a while ago, but have put it on here to see if anyone else has a similar situation going on, its just so frustrating