The Atypical HUS Foundation

January 2013 Blog Posts (8)

5 Years

5 years ago today I took an 18 mth old Hyde (with 3 yr old Ruth in tow) to the dr. for what I thought was a UTI.  We were sent directly to the hospital and so began our nightmare known as AHUS.  It's weird that we have such a line in the sand day.  Realistically Hyde had stuff going on for probably 6 mths or so before then - but until this day 5 yrs ago - we were 'normal'.  I would do ANYTHING to take away this whole experience and all Hyde has had to suffer.  But since that's not going to…

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Added by Phyllis Ann Talbot on January 28, 2013 at 10:11am — 2 Comments

Low Hemoglobin

Isla is having a hard time building her Heme levels up.  She had a couple of lapses of HUS in December but even before then she has ot been able to keep her Heme levels normal.  Hers seem to go up and down from the 7s to the low 9s.  Her ped neph is getting concerned with her inablility to build up her levels to normal levels.  All other levels are good right now except the heme.  Has anyone else had this problem and if so how is it being treated.  As always, any information is greatly…

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Added by Dustin G. Wiggins on January 22, 2013 at 6:09pm — 9 Comments

Chloe's Solaris

Chloe has been receiving Solaris treatment for almost two months now and it hasn't changed any numbers I didn't notice any change in her energy level and I was saddened at the thought that it might not be working, and today Chloe had treatment and labs and her haptaglobin was at 104 it normally sits at 30 to 40 Chloe today was in normal range my heart is leaping with joy as I think that finally it is an answer to our prayers Chloe isn't hemolyzing that is awesome :) also Chloe was taking a… Continue

Added by lisa ann peterson on January 21, 2013 at 10:01pm — 5 Comments

rocks in the bladder or something else?

So you know Nathan had passed a very large kidney stone and ultra sound had found two more.  Today they did a follow up on those two and found something roughly the same size as the two stones together, perfectly round in the bladder.  They are not sure what it is, as now it looks like there may be blood flow to the mystery globe.  

Our wonderful urinologist just passed away, and they have not found a replacement yet, but his student has moved to another area hospital which is trying…

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Added by Cheryl Biermann on January 15, 2013 at 4:45pm — 9 Comments

New to aHus / info / Concerns

Our daughter, Phoebe, 7 years old, was diagnosed with aHUS on Thanksgiving weekend 2012.  On Thanksgiving, our very healthy daughter woke up vomiting.  We assumed she had a stomach virus.  By Sunday, we knew she wasn't o.k.  She was pale and had slightly yellow eyes.  She was extremely lethargic and was still vomiting. 

Her original numbers from day 1 at the hospital were:

11/25/12

hgb = 5.5

platelets = 12

creatinine = 2.39

BUN = 154

LDH =…

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Added by Brett Lettiere on January 10, 2013 at 11:30pm — 11 Comments

aHUS Regional Meetings in Atlanta and New Jersey!

We are pleased to share details of two aHUS Regional Meetings planned by NORD.  Patients and their families are encouraged to take advantage of the opportunity to learn, share, and discuss aHUS issues.  Information below is provided by NORD, and will be posted in this site's EVENTS Forum for comments by aHUS website members.

The National Organization for Rare  Disorders is dedicated to helping the…

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Added by Linda Burke on January 7, 2013 at 11:00pm — 2 Comments

Almost 20 years...waiting for science

What a way to begin the year! Today was a miracle for my son Jonathan. He has been waiting almost 20 years for today.....for science to come along and help him battle his disease, A-Typical Hemolytic Uremic Syndrome.…
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Added by Donna Kolp on January 3, 2013 at 10:34pm — 2 Comments

2013 Brings aHUS Regional Meetings for the USA

 

 

     An exciting opportunity has been created for aHUS patients and their families to meet and discuss aHUS issues!  Allie Freitas OF NORD, America’s National Organization for Rare Disorders, today announced 2013 aHUS Regional Meetings for America. The following statments were posted on the Facebook page of The Foundation for Children with Atypical HUS (viewable at …

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Added by Linda Burke on January 3, 2013 at 1:30am — 4 Comments

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