Our Story

[Kortnee Fornetti]

Hi!

My name is Kortnee and my son, Kaleb, who will be 3 in April, was diagnosed with aHUS just 3 weeks ago. It's been a whirlwind experience! We began bringing him into the pediatrician about 4 weeks ago with, what I thought was, pink eye. The eye infection did not go away after a week of antibiotic ointment so I brought him in again. This time he had an ear infection on top of the eye infection.
By that evening he began vomiting. I brought him in again the next morning because he couldn't even keep water down. The doctor didn't seem too worried about dehydration because Kaleb had just urinated before we saw him and he really didn't have any other signs of dehydration. He sucked on a Popsicle and kept it down while we were at the doctor's office and then received and antibiotic injection because he wasn't keeping his oral antibiotic down.
By that evening, he was vomiting up stomach bile violently so we rushed him to the E.R. When the doctor ran labs, she then realized that a lot of his numbers were way off and came to the conclusion that his kidneys were not functioning. She started pumping fluids in him, hoping to kick start his kidneys but by morning, we were being flown down to Childrens Hospital of Wisconsin, 4 hours away.
I had never even heard of HUS and the doctors kept asking me if he had any signs of diarrhea or if my husband or myself had been sick recently. I started getting frustrated because I had told them everything. He definitely did not have any diarrhea. I wrote everything down in a time line form beginning from the pink eye so that they would stop asking me the same questions. By the time we arrived in Milwaukee, WI they had a whole team assembled to treat Kaleb.
Kaleb had a peritoneum catheter placed that night and dialysis started the next evening. It was heart-wrenching to see him suffering and there was no way to explain to him what was going on. He spent two days in ICU because he was so anemic. He had some kind of cold antibody attacking his red blood cells on top of the aHUS which dropped his platelets down to 20,000 and his red blood cell count to 6.2. He received multiple blood transfusions and began plasma treatments along with that.
After two days in ICU, he stabilized and was moved to a main floor where we spent another 2 and a half weeks. We thought we were on the way home after he urinated a week after arriving at the hospital but then he did not keep urinating. His potassium and phosphate numbers spiked two days later and he was vomiting again. He was put back on 24 hour dialysis for a couple more days and then he began to make urine again and continued to do so. I never would have thought in a million years that we would be so happy to see pee!
After a few days of continuing urination and improved labs, the nephrologists stopped dialysis. Kaleb's number from his labs continued to improve without dialysis and 2 days later we went home!
It's been quite scary being on our own now. We have an appointment to see our pediatrician tomorrow for a follow-up and then we will be heading back down to Milwaukee next week to have a follow-up down there. I feel like I'm on edge all the time now. If he feels slightly warm I'm taking his temperature and I have barely let anyone come over. The doctors have told us that a simple virus can trigger a relapse and it honestly freaks me right out! I never used to be a paranoid mom but now I'm going to be over the top! Hopefully, after a few follow-up visits, it will put us at ease.
Kaleb seems back to his same old self and I don't want to hold him back from anything!

[Bill Biermann]

Hi Kortnee, I wish we could meet under different circumstances, but thank you for sharing your story. It is a trait of a parent with aHUS to be constantly on edge, (that's what other people call it, we call it vigilance!), and it is what Kaleb needs from you! You're on the right track, I'm sorry the beginning was so violent, but it usually is. Our pediatrician pretty much told us, well, I'm your pediatrician only for insurance purposes from here on out, because anything that comes up now could affect Nathan's health. The nephrologists will really be his pediatrician, I'd only be an extra step that will slow down the proper care, please don't rely on this office, we don't have the expertise to deal with this. They were right, even poison ivy is bad new for these kiddos. They have been wonderful with other things like our other kids, and they make sure when the flu shots arrived that they got us in before other patients and before it ran out, ect. When he finally was able to catch up on his regular vaccinations, they scheduled a time when sick patients wouldn't be there ect. and in the beginning, they visited him in the hospital and followed his treatment course with interest, but without interference. It sounds like your children's hospital is doing wonderful job, as you can see from Svetlana's latest blog, that even when you have "permission" to use another ER, it doesn't always go well. Good luck, hopefully he will be one of the lucky kiddos who stay healthy when not exposed to illnesses. That's what we will be praying for. By the way, you might want to do what we have done, we have a hand cleanser dispenser right at our front door, we think it has helped.

[Amy Swarbrick]

Sorry to hear about Kaleb. Glad you found the sight though and hope you can find friendship and support here. We are all either going through the same things or have been through the same things with our own kiddos so don't feel alone. Hope everthing continues to look better and better.

[Svetlana Finley]

Hi Kortnee,
You have wonderful family, thanks for your story like Linda saying we all went thru scary time at beginning specially not knowing anything about it. I am glad u are home and doing well. I learn at home i have to watch Anna and if any little change like being tired i try to get her labs done this is pretty much our trick to catch relapse before it hit hard. If u feel something is changing in him try to get him to the doctor and go by your instincts.
Good luck at your dr. appointments and ask any questions you have.
Love your family pictures specially with SNOW ;-)

[Linda Burke]

Hi Kortnee,
Thanks for adding your story with so much detail - many of us have had exactly the same scary symptoms and have copied your journey. When you see the pediatrician tomorrow, feel free to print out and bring along the 'Doc to Doc Registry' from this site's Home Page. Since aHUS is so rare that most docs never see a single case of it, and the symptoms/treatment so complex and varied, we've developed a list of docs that welcome contacts from other physcians (no fee, of course). You'll notice that while all aHUS patients are treated by a specialist, most aHUS patients have a nephrologist but some have a hematologist as their specialist. Please feel free to write down specific questions you have- while we're just parents we do have a wide variety of experiences to share. For detailed medical information, check our informational site at www.atypicalhus.50megs.com (see Links Box on Home Page) but a quick-study version can be found in the Tabs at the top of the page (see 'About aHUS'). Glad to hear that Kaleb seems so much better- he sure is a cutie!!