Atypical Hemolytic Uremic Syn. community

Atypical Hemolytic Uremic Syndrome or aHUS is an ultra rare autoimmune disorder. Below you'll find information and insights into living with a diagnosis of aHUS.

Our new journey with Atypical HUS

Written by Blakesmom, published 7 months ago.

In November 2007, my son Blake, age 6, was not feeling well, he had a little fever and a headache so I kept him home from school. Later the next day, which was Saturday, he started vomiting a little here and there nothing like normal stomach flu.

I talked a little to my Brother-in-law who was just graduating from medical school. He thought like I did. Blake probably had a bug that was lasting a little longer than normal and he said if he isn't feeling better by morning, it would probably be a good idea to take him in to a doctor. Later on that evening Blake became more lethargic.

I had never seen him like this before and I became more concerned. I watched him through the night and when the next morning he didn't have the strength to stand, my husband and I decided it was time to take him in. As we pulled into the medical center parking lot, I looked at him and noticed a yellow color to his face which set off another alarm.

We got in and were told there was a 90 minute wait. It was awful he was so tired and wanted to lay down so I just held him. After waiting about 45 minutes he said he had to go to the bathroom and he was already so miserable I wasn't going to make him wait so I carried him to the bathroom sat him down and he asked if I would hold his head up for him and as I was doing that I looked in the toilet and saw that his urine was blood.

My heart stopped and then was pounding. I got both he and I cleaned up and sat in the waiting room and immediately called my brother-in-law to tell him what had just happened and he said "oh, the only thing I can think of is HUS, and that's not good!"

I couldn't sit there and wait any longer so I told the woman at the desk what had just happened in the bathroom and she went and told the doctor and they called us back a few minutes later. She asked for another urine sample and when I saw it I wanted to cry! What was happening to my baby? So many questions.

Finally the doctor came in and looked at Blake and said we have a very sick little boy! He then said those 3 letters HUS which I had heard from my brother-in-law were "NOT GOOD". The doctor then told me he needed to be admitted to the hospital and that and ambulance was on the way to take us there!

So we went by ambulance and he was then admitted to Primary Children's Medical Center. Blake was diagnosed with HUS. They did a lot of tests and finally discovered that he did not have the normal HUS. He had what they thought was Atypical HUS with no known source.

So he was released with the information that if it ever came back then we would know for sure it was the genetic Atypical HUS. Well, our worst nightmare was confirmed on January 18, 2011. Blake was not feeling well started with a fever and a headache and sleeping all day. All too familiar, so I took him to his Primary Care doctor, where he was asked to give a urine sample.

As he did that my heart stopped and I knew by looking at the coke color urine that it was back. His doctor didn't know what to do he had never seen this before. He called Blake's nephrologist at Primary Children's Hospital and she said if he gets any worse bring him right in. Well of course he did and as a mom knowing what we were up against this time I didn't wait long.

He was admitted that night at 6:30. We spent 8 days there this time; 3 more days then last time and this time instead of just fluids he had to receive plasma everyday and had a blood transfusion. They put a hemodialysis line in him on the 4th day because I was done watching him be a pin cushion and his IV's weren’t even lasting a day.

They decided it would be best to just do it in case he needed either plasma exchange or dialysis. Thankfully he didn't need either this time. He is slowly regaining his energy and color and seems to be getting stronger everyday. So now we are starting our "new normal" of living with this disease and all of the unknowns that come along with it.

Written by Blakesmom, published 7 months ago.

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