Update on Brody

[Amy Swarbrick]

Hi everybody. It's been awhile since I've posted so I thought I'd give a quick update on Brody. It has been one year this month since his last plasma infusion. Is it possible to hold your breath for a whole year???

Currently we are getting his labs done every two months. Last labs showed his LDH slightly above the normal range. Everything else was good though, including his Haptoglobin and C5 assay. So???

Other than that Brody got his cast off two weeks ago finally. Which now I wonder if that had anything to do with his labs since he had the blood drawn only a couple days after he brock his arm. Hmmm..

Brody has been enjoying his summer and we have been loving it with him. We swim a lot and have been on a couple trips out of state for family events. He is growing into his two year oldism (that should be a real word;) He wants to do everything like his big sister and has a direct opinion how he wants everything to be done, even down to who gets him out of the car seat. I'm not even kidding!

Oh I also have a question for everyone about vaccines. Brody is WAY behind on his vaccines. How has everyone handled this? Our doctors say he needs to get caught up but I am nervous about a relapse.

It's hard to imagine life any different than this ya know. I have nightmares all the time of Brody getting sick again or even him passing away. But I know I can't let these fear affect our daily lives.

I pray all the time for a cure and God bless all of you.

Amy

[Wendy Flinn]

Hi Amy. I read your post and Yay for being past a year with no relapse. We are almost at our year mark when my son became ill. As for vaccines... that's a tricky decision. Everyone is different. I know in my son's case he can't ever have a live vaccine again because we are pretty sure the mmr and varivax one or the other or both triggered my son's aHUS. But he got his flu shots and did fine during his recovery. So this year we'll do the flu shots again but I'll never vaccinate him for anything else. I guess it's how much you trust your dr's. I trust my son's and followed their advice about the flu shots and all turned out ok even though I was scared to death when he got them for the first time after he was sick. Sorry I don't have anything better to add, take care and hang in there.

[Phyllis Ann Talbot]

hey there Amy! That's so GREAT! As far as vaccines - we are the opposite - Hyde is WAY ahead on his - but that's mostly because we are purposely doing that since he can't have any live vaccines when he eventually gets transplanted - so we are trying to keep ahead so he gets as much protection as possible before. Also - since he's been on dialysis his AHUS has been pretty quiet - so we've been a little 'slack' on worrying about AHUS relapses lately - especially since he had his nephrectomy - not sure that really helps you at all since Hyde's SO different than Brody - hopefully someone else has better advice ;-)