The Foundation for Children with Atypical HUS

Anna is home and her line is out ;-)

In last two weeks Anna been having problems with her central line untill last weekend it was really started getting more worse. I had to pick up Anna from school on Monday and take her to Doernbecher hospital, for check up and culture of her line. On Tuesday morning Anna went to school and stayed there untill she was done with her school. During lunch time i received call from Anna's doctor telling me that she has STAFF infection and that they need to admit Anna and remove line on next day. I waited untill she was home and we were on the way there, Anna was soo exited to get her line out and she seemed didn't care that there is more danger for her to have infection, but what can u expect from a kid who wants do what other kids can, JUST BE NORMAL. She was soo happy all evening and was telling all her nurses that she will get her line out ;-) Later that evening i ask to see her labs results from Monday visit and find out that her kidney levels, not where i would like to see them. I requested to get extra labs in the morning, so we can be sure nothing going on and her kidney level got to normal range. BY that afternoon she got her line out played BINGO and they got to send us home to finish antibiotics.

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Comment by Grace on March 9, 2010 at 7:47am
I can understand Anna's enthusiasm! I hope she clears the infection soon and remains stable and line-free for a long time!
Comment by Svetlana Finley on March 7, 2010 at 8:33pm
Anna will not start Soliris unless she will start showing any sight of relapce. Research is for 12 and up and Anna will be 12 on May 22, so we just hope she can last with out the treatments untill then.
Sveta
Comment by Bill Biermann on March 7, 2010 at 7:09pm
When do you all get to start Soliris again? It will be good to see here save those kidneys.
Comment by Amy Swarbrick on March 5, 2010 at 11:39pm
So happy for Anna! It must feel so good to her. We'll pray she doesn't ever have to have another one! So is she starting soliris even if she is not needing infusions? I love Doernbechers, you guys are so lucky to be there. Cadance loved playing bingo when we were there too:)
Comment by Linda Burke on March 5, 2010 at 2:55pm
Hoping that Anna's numbers hold and that her staph infection clears soon!

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
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