Brody

[Amy Swarbrick]

I don't post much but I always check in to read others updates and always keep these kiddos in our prayers. Brody will be 3 years old on April 2nd! We are so excited and feel so blessed. He keeps us very busy and is a non-stop chatter box. Literally it is hard to get a word in when he is around and it is impossible to argue with him because he will never give in (I'm sure he didn't get that from me;).

It's hard to imagine life with him sick again but it's always a constant worry in the back of my mind. I know you mothers know what I am talking about. This August will be the two year marker of Brody stopping any type of treatments. So far all of his labs have indicated the disease is under control. He is only getting tested every couple of months and sees the kidney doc every six months. He has had a handful of colds, fevers and just recently got through a really bad stomach bug. Poor guy threw up and had horrible diarrhea for days and of course his sister had it at the same time:( My question for everyone is what kind of illnesses are triggers for your children? Brody's first occurrence happened after a case of RSV. Also how long have some of your children gone before a relapse?

 

[Wendy Flinn]

We are going on a year and a half now with no recurrance. Tristan has only had it once but it was very severe when he did. His trigger was either strep or vaccines or both, we'll never know which. We see the nephrologist every six months too. I understand your worry when your son catches something, I do the same thing. I just keep my fingers crossed and attempt to keep my 3 year old as healthy as possible. But you know how they are, attract every germ on the planet :)   

[Amy Swarbrick]

Thanks for everyone's comments! I think we can all agree this disease is very unpredictable and scary but thank goodness for all of you and this network of support we all share.

[Sylwia Antkowiak]

Hi Amy, its great news that nothing is happening. With our Maya it was preorbital cellulitis which is  just a bacterial eye infection and once it started it never stopped until the kidneys were gone. This disease is very very strange and difficult to follow and impossible to predict

[Svetlana Finley]

Aweosme, Anna been soing well too and it's been 13 month since she has treatment. She did had brake once for 6 years, then 9 month this time it's been 13 month. Doctors hopping not to see us anymore, only for visits. We will retest her factors since she is not getting any blood product for awhile.

[Linda Burke]

It's always so great to see pictures of your sweet family- terrific that Brody continues to do well !  Skyler hasn't had any treatment for 10 months, and I feel blessed that he's nicely weathered the normal 1st grade illnesses without triggers to activiate the aHUS process.

I'm with you, aHUS is always a spectre that floats 'round the next bend - let's hope it vanishes with lots of fresh air, sunshine, and smiles. <hug>

[Jaime Lauck]

Hello, Amy,

     It is unknown what caused my initial cause of the disease - I was never really sick or had a virus or infection of any kind.  I relapse only occasionally - I just had my first one in two years.  The stomach bug triggered it this time :(  Sometimes with a fever or a slight cold, my disease will slightly act up and then go back to normal without treatments.  It's a strange disease and I'm very glad for your little boy with going on two years!  My docs are looking to put me on Soliris to keep the hemolyzing at bay.  It soundss like you won't have to do that with your son.  I am very happy for your family. 

[Cheryl Biermann]

Hi Amy,

 

Celebration!  Get that kid a new chicken to traumatize!  I love those pictures!  Anyway,  with Nathan everything caused relapse, even just trying to stretch out the FFP transfusions-(so you see why I'm so goosy about removal of lines!)  Anyway Kerri is right, some people only react very occassionally or never again-who knows why?   Sorry I can't give you more peace of mind...diligence is they key, and you have that so you are half way there!

[Kerri Grey]

Hi Amy, that is such great news that Brody is doing so well!!! To answer your questions, any little thing would trigger a major HUS recurrence like a slight runny nose.  And i think on the relapse issue some relapse every other week and some never relapse.... i hope for you that Brody is lucky enough to one that never relapses!!! i know that the worry of a relapse will never leave you though wouldnt it be nice to have magic to see into the future???