Marissa had her biopsy this last Monday. We stayed at the hospital waiting for results til Wed. but came up with no answers...They don't believe that it is the hus causing the symptoms this time, but don't know what it is. Hopefully we will have some kind of understanding by Christmas Eve...and go from there. Dr. did say that he doesn't want to start soliris until he is sure it is an hus relapse.
It is definitely frustrating not knowing as I am sure you all know where I am coming…Continue
I will never look at Thanksgiving the same ever again. Samuel had his 2nd flare up on Tuesday, 11/20 and ended up in emergency surgery on Thanksgiving day for a PD catheter. This 2nd flare up was way worse than the 1st. By the Monday after Thanksgiving, he was still not able to keep any food down and looked near death. By the following Wednesday, we were finally able to get him to keep a couple ounces of breastmilk down. He was not even getting fluids because his blood pressure was at…Continue
Our daughter was diagnosed with ahus at 7 months old. I have talked with several of you on here about the treatments your children are taking and frequency. I was wondering if anyone else has an infant being treated with soliris and what the dosage and frequency is. I would just like to compare notes on the treatments and results. Thanks
We just took Isla yesterday for a soliris treatment. She had been sick a few days ago and we had a blood test done to make sure her ahus wasn't kicking in. Her Hemoglobin had actually went up to 10.8(labs week before showed Hemoglobin at 10.2). Her platelets were 250. We went for her infusion yesterday and her Hemoglobin had dropped to 9.9 and platelets were 170. Our doctor was OK with the results and said there was no need for concern. Her creatanine was up some to 1.6 but he said…Continue
Sorry everyone that I haven't been on here in a LONG time, I have been quite busy lately. Since the last time I posted; I'm sure you folks read that I had started an LVT job. Well, I am STILL working at it- 9 months now and I am enjoying it, but it is very hectic. I have begun doing surgical assisting, which is pretty interesting.
No news on a kidney just yet, but I am holding up my head high in hopes that something will certainly come sooner than…Continue
Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into journal article and research papers available to patients and their families. Along with this new information has come the need to dispel commonly held information that now needs to be updated to reflect current medical fact.
* Adults can be diagnosed with atypical HUS.
* aHUS affects not only the kidneys, but damage can also occur in…Continue
Added by Linda Burke on December 2, 2012 at 2:30am — No Comments