The Atypical HUS Foundation

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 probably a result from the recent sickness.  Now today she is passing blood in her urine.  This has us very worried.  The thing is she is she doesn't seem to be dehydrated.  she is having a normal amount of wet diapers and seems to be in good spirits.  We are just worried about the blood in the urine.  We have called the doctor but have yet to hear back.  We just are frustrated that we just had a treatment but are still having this situation.  Also we don't want to be paranoid and just drive the doctors crazy.  At the same time, this is our daughter and we are worried to death.  I was just wondering if any of you guys go through anything similar to this and what to do about it.  We trust the doctors but we are so inexperienced with this disease.  Any info is appreciated as always.  Thank you.

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Comment by Kimberly Lancaster on December 19, 2012 at 10:23am

Don't feel like expressing your concerns to the doctors is driving them crazy.  The doctors know that you know your child best and if you have concerns they should hear them.  Blood in the urine is not good and is a sign of a flare up, but could also be the end of the process.  It is so hard when they are too little to tell you how they feel.  Trust me, I feel your pain...I am right there with you.

Comment by Cheryl Biermann on December 9, 2012 at 9:22pm

oh so sorry.  Don't wait for them, any flare up of aHUS is bad news.  Do not be timid! That is what they are there for.  Sometimes early on, the activity of aHUS is stopped, but the disease process is not finished up yet. So to quote one of our parents, an army of archers fires their arrows, then the archers are out of arrows but the arrows keep landing even when there is no more amo.  We had to adjust our dose and they were seriously considering moving our son to every 12 days for a while, but he did stabalize.  Sending prayers your way.

Comment by Dustin G. Wiggins on December 9, 2012 at 7:22pm

I need to clarify that her creatanine was at 0.6 and not 1.6.  I mistyped that on the post. 

Comment by Svetlana Finley on December 9, 2012 at 5:28pm

We will be praying for short and fast recovery. Keep us uptating

Comment by sabrina kiernan on December 9, 2012 at 4:17pm

Hope all goes well tomorrow.  Our son ryan relapsed on Soliris but they believe his infusion "tissued" in that he did not get full infusion due to position of needle, his hand swelled up.  Also he caught a virus and bloods showed he was in relapse stage again - platlets dropped, ldh up, haemoglobin down, however Soliris stopped it, on one occassion he had to have Soliris extra dose given.  It may be to do with how long is being left between infusions, as other people say, can be given every 10-16 days usually or as I see every three weeks.  Hope all goes well tomorrow.  Soliris a powerful drug and a wonderful drug for aHUS, Hope Isla ok.  Best wishes.  

Comment by Dustin G. Wiggins on December 9, 2012 at 3:18pm

Thank you all.  I believe we will be returning to the hospital tomorrow.  Isla has relapsed.  Heme 9.1  Platelets 87000, creatinine up a little, and LDH 500

Comment by Svetlana Finley on December 8, 2012 at 10:21pm

Did Isla still gets treatments every 3 weeks? i think the best for you to contact Alexion nurse and let them know what is going on and they can contact your doctor and see if there anything need to be change. in the beginning i think everyone had somewhat adjustment in dosage and how often. Like i told you before i didn't hear anyone going every 3 week i think everyone going every 13-16 days.

We will be praying for Isla to get better soon, keep us updating 

Comment by Kimberly Tressler on December 8, 2012 at 9:28am
I'm sorry Isla is continuing to show signs go aHus activity. I know it took awhile before my daughter was stable on Soliris. Several times her doctor moved up her treatment days based on her labs as she needed it sooner. I hope the doctor has called you back by now. Praying for you and Isla. I know how scary this is for you all.



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