Aiden's Story

[Christy]

Hi all! Just wanted to share Aiden's story:

Aiden was born in June of 2007 healthy as could be--we were (and ARE) so blessed to have this beautiful baby boy in our lives...we prayed for this child...and now our little miracle was here. The day after receiving his 4 month vaccinations (November 2007)Aiden was clearly ill---I called and took him into his peds office just to be told it was a bad reaction to the VAX--no labs were drawn even though I was very concerned that he'd had little to no intake with vomiting and diarrhea since the vaccinations. We were brushed off and ended up taking Aiden to a local ER later that night. As the labs came back it was clear that Aiden was very, very sick. We were life-flighted to Medical City Children's Hospital in Dallas, Texas and admitted to the PICU. At that point Aiden was diagnosed with typical HUS and spent 5 weeks hospitalized on PD, IV drips for BP control and a ventilator for 8 days. My baby boy was barely recognizable he had so much fluid on board. It was a nightmare and all we could do was pray. Our prayers were answered and Aiden recovered fully, or so we thought. He went almost exactly one year with great labs, normal urine output and just a little anemia and contiuned BP probs. The doctors thought that his bp and Hgb levels would eventually return to normal. At a routine checkup with his nephrologist in November 2008 his BUN, Creatinine came back elevated....we were again admitted to Medical City Children's and Aiden immediately had another PD catheter insterted with a central line and a kidney biopsy. His biopsy results came back conclusive for AHUS and we sent off labs to U of Iowa and waited while we started plasma apharesis and spent another month in the hospital. Aiden never responded to the apharesis and eventually he we discontinued those treatments--We have been at home without hospitalization since February of this year and Aiden as been doing well on PD. He takes 3 BP meds (Norvasc, Vasotec and Atenolol), EPO, Phosphate binder, Iron, Calitriol and will soon start growth hormone injections. He is such a little fighter and refuses to let anything get him down. He keeps a great little attitude no matter what and my husband and I continually have to remind ourselves to try to keep that same attitude. If he can do it, then we owe it to him to do the same. At the time of his first illness everyone thought we were crazy for thinking his vaccinations had anything to do with it...but in my heart and mind there was no question. He was fine before. I know that the vaccinations did not CAUSE the AHUS but his doctor now agrees that they are definitely what triggered it. We have started Aiden a web page with a blog and updates and a local jewelry company designed a sterling silver piece called "Aiden's Cross" The proceeds of the sale of the charm are to be split between Aiden's Medical Fund and the University of Iowa. We have been trying to create awareness here at home and some friends are now putting on a benefit for AHUS in Ohio in July. Awareness is key!! We are so excited about the promising developments with Soliris and are watching with hope to see what is to come. Believing in a Cure---Christy Cross

[Zofia]

Hi Christy,

although I can't say that vaccines triggered a-HUS in my daughter case, but I noticed connection between her relapsing and vaccines She was given . For now She doesn't get vaccines at all, even the obligatory ones, for two reasons:
1. a-HUS is an abnormality in working of immunological system, so We can’t really know how it will react to vaccine
2. it should be a month break between blood or plasma infusion and a vaccine, witch is impossible in our case (FFP every week)

[Colette Ann Frysz]

Hi Christy!! Aiden has had a rough road so far. One of the side effects of the growth hormone though is increased blood pressure. That was why when it was discussed when my daughter was three we turned it down because she had very high pressures even with three different BP meds. I felt we would simply be medicating the medicines. Hang in there all of you and be as normal as possible!

[Donna Kolp]

Hi Christy,
I was reading your story, and I have to agree with your Doctors about the vaccinations. 2 1/2 weeks before Jonathan got sick for the first time he was exposed to measles. Since he was not at the right age to get a MMR, his ped. gave him a shot of Gamma Globilin (sp?). My husband and I have always thought that this was a trigger, if not the cause. But, his Ped. didn't seem to think so. Of course this was at the time when there really was not too much information out there regarding aHUS.
I just wanted to share that, as it is ALWAYS in the back of my head.
Take care, and sending prayers your way for friday!
Donna

[Christy]

I forgot to mention---All of Aiden's testing from Iowa has come back normal......he's a hard case to crack...apparently he didn't read the AHUS manual...haha.