Added by Dana M Simone on April 30, 2013 at 8:13pm — No Comments
I have been meaning for a while to update this blog.
At some point in February, we finally switched Phoebe to Soliris. We were watching the factor H autoantibodies decrease. We were given hope that her autoantibody level would go to zero. They started at above 2,500 and they decreased to 2,000, and then1,200, and then 300. At that point, we still decided to switch to Soliris for several reasons:
1. Plasma was scaring us, and it was taking 12 hours 2-3 times a…Continue
Added by Linda Burke on April 23, 2013 at 12:51am — No Comments
Hello everyone. It has been a while since I have posted but we have been super busy. First a little update on Isla. We have had a good last few months. No major sickness to speak of and no major relapses since end of Dec.- first of Jan. Most labs look really good except we are still a little low on the heme. But she is holding the highest levels she has had since October with a heme value around 10. We are praying and keeping our fingers crossed that this continues. Now I was…Continue
Recipie for kidney stones:
One aHUS patient, preferably ripe, (You can tell if they're ripe by noting the background, dialysis?, feeding tube? Years of aHUS service?)
kidney transplant with Soliris
new urin that has copious amounts of phosphorous and calcium
stich left over from new ureter site for collection of calcium/potassium, (optional) to accumulate on
due to long periods where…Continue
Added by Cheryl Biermann on April 17, 2013 at 10:30am — No Comments
Yeah - you read that right, Hyde broke his collar bone Friday night playing outside with all the neighbors. I swear you can't make this stuff up! And I was naively thinking we might get to skip 'normal' kid trauma given all the other junk he's been through - but obviously I was mistaken! I also have learned that a broken collar bone is a PAIN! I know no broken bone is a picnic but there is no real way to cast a collar bone so there is no real way to protect it. Hyde…
CONNECT. SHARE. SUPPORT.
Join us in New Jersey - April 26-27, 2013
For A Regional Meeting for People Living with aHUS…Continue
Added by Linda Burke on April 8, 2013 at 11:30pm — No Comments
Just another little update on Nathan. We have been attending Physical Therapy, Occupational Therapy and Speech Therapy once a week since September due to continued problems and even worsening of some things led us to a neurologist who recommended further testing.
Next week, Monday, the Physical Therapist is moving Nathan on to once a month rather than once weekly! You would not believe the tools they have available! We learned about "sleeping" muscles. For these, she…Continue