update on Matt the good and the bad

[Kristina]

Well its been awhile and I feel bad everytime I write on here its always something bad or with questions I have. I wanted to start off by saying Matt will be 6 months on the 27th of this month. He is growing taller and getting chunck rolls on his arms and legs. Though I believe this is more to holding fluids than baby fat. He is talking and making laughing noises and rolls all over the place. He is always smiling and never (except when he doesnt feel good) fussy. Such a good sleeper thru out the night and brings so much joy to me. Watching him and his 8 year old sister play is fun. She loves having her little brother around and is teaching him the facts of life. Like you have to pick up your room, do homework, follow directions and not to pull her hair as it hurts. She thinks by telling him now what he has to do, when he gets older he should know all the rules and follow them without getting into trouble lol.

On the other hand, after being home for a week with him sick (just thought it was a flu) I took him into his Dr for a check earlier than his appointment to have him looked at as I knew something was wrong. He was admitted to our local hospital initially for dehydration, ear infections and Gastroenteristes. Then once they did some other tests, found out he had an other bacteria growth in his cultures, UTI, and anemic. We were only there for 3 days to get him back to eating and keeping fluids in him thru an IV and then back to bottles. The little guy is now taking Zantac & Omeprazole for his GERDS, Amlodipine for his blood pressure, Ferrous Sulfate Folic Acid for anemia and Amoxicillin for the infection. I knew something wasnt right when he wouldnt eat and keeping down what he did eat in him. They said I should of brought him in earlier, but the last time I did this to our ER, I was told kids get sick and there isnt anything we can do. His Dr mentioned to me that I know him best and if I am concerned to bring him in to see him and not the ER or any other nurse/dr. This made me feel good to know he has Matt in his best interest. The test I know they did while he was in the hospital were UA/UC/CBC/CRP/CMP/and LDH. Though problems are still unanswered. Was suppose to do some genetic test (to test for certain mutations) done but the Childrens Hospital and our hospital was trying to figure out who can do it and when. They have to be done between his vaccines and being sick. I am also concerned because they insist its Atypical HUS but all I hear about is him having infections and bacteria but not any problems with blood and other organs like the kidneys. I also have read that regular HUS doesnt repeat and I did get a response when I asked if there is anything I can do to prevent these infections and was told its not my fault and there is nothing I can do to stop them. Ive never received my phone calls back from the Childrens Hospital concerning his check up there and the test there were suppose to do by now. So now I just wait and take care of the little guy when he isnt feeling good and do what I think is best for him when I know he needs medicial attention. I feel like I have a great job that holds my position when these things happen, but not for sure how much longer they can actually keep going if his health continues to fail like this for weeks at a time. Its hard to talk to my husband overseas about whats going on to. This all happened after he left, and he relies on what I tell him. We all have to keep positive attitudes about Matthew, but not knowing is the worse feeling.

I appreciate this site and knowing that I have a place to vent and talk to people who understand some of the same feelings I am having or had. Thank you to everyone and even if I dont have clear answers on the whole Atypical HUS thing, knowing the mental support you guys give wonderful.

Oh yes forgot to mention, I take my older daughter to the Shriners later this week to find out if she is going to have her 2nd surgery to lengthen her leg. She was born with a bowing on her leg and already went thru 1 surgery when she was 3 years old. Wish us luck, God cant give us what we cannot handle :)

[Heather Still]

Hi Kristina,
Sorry to hear of your recent struggles. It can be common for a physician to call an inital onset of HUS, only to change later to aHUS. That's what my son's case was anyway. He was 10 months old when he had his first "episode" and was then called HUS. He was only hospitalized for 9 days and had a few blood transfusions, but did have some kidney impairment then. He was fine from that point until he was 3 years old when he had his second "episode" which has been active constantly since then. I agree with Jodi and say going through the U of Iowa is where you need genetic testing and I don't think there is anything that would interfere with getting that started. If your docs have questions you should definitely have them refer to the doc to doc registry on this site to help direct them. Take care and feel free to question every aspect of what Matt is going through.

[Jodi Kayler]

Hi Kristina. Sorry for all your going through. University of Iowa is the only place in the states that can complete the full line of genetic tests for aHUS. You don't have to wait between relapses and vaccinations to start the testing process since they are doing gene studies. Their info is on the home page. I would encourage your docs to contact them.

[Cheryl Biermann]

Geeze! When it rains it pours, I hope your daughter's surgery goes well and Matthew is able to be stable at that time, if it is any consolation, some of us also have other kiddos with special needs as well as aHUS. Please feel free to get it off your chest ANYTIME! Maybe Matt will be approved for Soliris?

[Melissa Hearn]

Hi Kristina,
Thanks for sharing your story. I'm so sorry to hear about all the struggles you are going through right now. My Bryan was 4 months old when he first presented with signs of HUS, later determined to be AHUS, and 6 months old when the doctors decided to try Soliris. Now he is home, and other than having to go into the clinic every 3 weeks for his regular infusion of Soliris, and take some meds he is very healthy, happy normal 11 month old. I hope that you are able to find answers soon for Matthew. I know first hand how awful it is to sit around and wait for test results and not know if anything will work. I do not have as much knowledge about the disease as the lot of the parents here, but am happy to answer any questions, & offer support to you in any way that I can. It is so tough to see baby's hurting and not know how to kiss it all better. I'll be praying for you.