The Foundation for Children with Atypical HUS

Well lil miss went to the doctor today and the neuro doc said that we are going to keep a diary of her headaches and doc Hernandez is going to change blood pressure meds to see if her headaches get better. She is also getting another MRI to check her lower spine to see if that's what's causing her incontinence there is also alot of other tests they are going to run to see if they can figure out why she is having those migraines and they also don't think it's the Chari one malformation. Also she has a nasty cold and dr h wants labs on Saturday to see how she's doing she has had high blood pressure the past few days so i will update when I know more

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Comment by Svetlana Finley on March 23, 2011 at 10:28am
Thanks for update, I hope they will figure what causing those headaches, Anna has them too,we are waiting to see our specialist in May.
Comment by Linda Burke on March 22, 2011 at 11:44pm

Phooey....let's hope the news turns to a nicer tune soon, sweet Chloe needs some feelin' better days!  Skyler's labs were slightly off for 2 months, guess it's been a bad winter of minor colds going around here in Maine.  Just enough to worry his Mom for a couple of months....Skyler just got his first set of "good' labs back since Christmas, and I join you in the gray hair/no sleep arena with that.

It must be doubly hard to put on your 'tuff hat' yet again with so many unknowns on multiple fronts.  Thank goodness Chloe's Dr. Bananas is on the case, as Dr. Hernandaz is fantastic.

Comment by Cheryl Biermann on March 22, 2011 at 10:27am

Hi Lisa,

 

Good luck with everytrhing, I know I probably don't need to remind you not to give her dye during her MRIs, but I'm doing it anyway, just in case in the frantic need to relieve her of symptoms and pain and everyone trying their best  to figure it all out, they forget.  Hugs for your whole family.

Comment by Kerri Grey on March 22, 2011 at 4:50am
keeping you in our thoughts and prayers!!!

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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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