Devin's Update

[Paula Blanchard Lamigo]

Well, Dwaine and I got back home late Sunday night and Devin didn't miss us at all. Of course he was glad we were home, but he did not ask for us the entire weekend. He just loved playing with Grandma & Grandpa. Both he and my parents were completely worn out from playing all weekend. Devin's last appointment was October 8th and he looks great. His HCT & HGB were low (as they always are), but at least the numbers were closer to the low end of the normal range. However, his proteinuria continues to run high and his LDH was 748.

Now, I am trying to decide what route to take to push his doctor for Soliris. Since he is in a constant state of low level hemolysis, it would/and does make complete sense to me that we should start him on the drug before his kidneys get any worse. However, his physician is conservative and thinks that the current regiment is working. I'm currently trying to decide if I want to go the route of changing to a different hospital where the physicians might be more open to new treatments~or pushing Dr. Kher again and possibly letting him speak to Dr. Hernandez and some of the other physicians who have patients currently using Soliris. I don't know if he might be persuaded once he hears from other physicians~since a crazed mother might not have as much of an impact. Anyway, that's where we are at currently.

We had a wonderful time at the conference and we were very excited to meet other families in similar situations. Dwaine will be speaking to his Commanding Officer about fundraising for the Foundation and I am seriously considering hosting a bunko for aHUS and enlisting friends and family to "donate" prizes for the evening.

Hope all is well with everyone and we will keep all of you in our prayers!

[Heather Still]

Good Luck on persuading his doctors. I think Ryan's doctor will be okay with trying Soliris, but I don't know about myself or the insurance company. Right now Ryan gets plasma biweekly which I'm sure isn't as costly as Soliris so the insurance company will be a big fight. And he's maintained himself well on biweekly infusions for the last couple years, so I'm hesitant to provoke a possible flair up if he doesn't respond to Soliris like other children...especially since it still means at least biweekly treatment and we would most likely have to travel to the Children's hospital (an hour drive) again instead of the smaller local hospital (7 minute drive) we go to for his plasma infusions. We see his nephrologist in three weeks so I warned him to be prepared to discuss our options and we'll just go from there. Good Luck with your battle!!!

[Amy Swarbrick]

It was great to meet you guys in Iowa. Hope you can talk some sense into Devin's doctor. I have a feeling when the time comes we will have the same problem, so keep us posted on your progress.Good Luck!

[Lisa Goble]

wishing you strength to fight for what you think is right, the words to present what you think is the best for your child and the wisdom to put it all together.

[Cheryl Biermann]

Hi Paula, I know how you feel, he's in a holding pattern so you don't want to do anything to mess it up, but you're always waiting for the next flare up and wondering if the next one will get rid of the little function that is left. I'll pray that God is there guding the decisions you have to make regarding doctor/hospital and that the doctors are also his instruments.

[Phyllis Ann Talbot]

Hey there Paula - good luck! Always fun convincing the dr's! Was great to meet you and glad you made it home to Devin OK - even if he didn't seem to notice you were missing ;-) Kind of the same response in the Talbot household - these boys!

Phyllis

[lisa ann peterson]

i so talked to dr. h.. and told him you guys said hi, he remembered u guys.it was nice to meet you and dwaine at the conference. i hope that you get to try solaris we are starting to work on the process which might take some time but i came back from the conference ready to take on the world ok maybe not the world but at least the insurance company lol.. take care and i hope that devin gets to save his pee pods thats our new word for kidneys thanks to jodi..

[Melissa Hearn]

Hey, it was good to meet you at the conference!!! I know what you mean about your Dr. being conservative in regards to Soliris. We brought it up several times with our doctor, and it was not until after he spoke with Dr. Hernandez and the CMO at Alexion, and a few others that he was ready to give it a try. I would strongly recommend that you ask if your doctor would mind talking to some other nephrologists like Dr. Hernandez. Bryan's dr. is Dr. Sherwinter, and I will see if he minds me sharing his info with your doc if you're interested.

He's been amazed by the results in Bryan, and is talking about publishing him, as the youngest baby ever to try Soliris. He is calling it the miracle drug!