Re: Beth/Dr. Fox

[Guest guest]

Suzanne,

Yes, I actually have emailed him and you are right, he's great about

responding. I'm happy to hear that he keeps up with the latest info

on pancreatitis. Our family doc has never seen a child with it

before and our local GI doc seems to be of old school information.

What is Dr. Fox's position on pain without enzyme level increases?

Who did your son's fundoplication? Will has had two, the first here

locally and the second was done at Boston Children's by Craig

Lillehei. I really love him! He's done other surgeries too. And we

deal with both him and Dr. Fox when Will needs to have the

fundoplication area dilated. I always feel like we are in such

capable hands with those two men.

We've never needed to deal with the pain team before now..not sure if

that is where we will head.

Take care,

Beth

[Guest guest]

> Hi Beth

>

> You have named two of the three people who we literally owe our

lives

> to. Dr. Lillehei is also our surgeon and he is the one who

performed

> Joey's pancreatectomy and islet transplant. It was the first one

he

> had ever done and there isn't another person I would have rather

had

> do it. There aren't words to describe the compassion that they

have

> shown us over the years. If you are wondering about the third

> person, it's Dr. Sethna from the pain team. He is truly an angel

> sent from heaven. The last couple of years Joey very rarely had

> increased enzymes with his pain. He was home (and hospitalized) on

a

> constant infusion of Demerol - eventually enough to kill an

elephant -

> and was never free from pain. We tried nerve blocks, epidurals,

> patches, etc. and when he was having an episode, there was nothing

> that gave him total relief. At the end, his episodes were lasting

> between 6-10 months. During those times he was unable to eat or

> drink anything. He existed on TPN and Demerol. Noone knows why

his

> pancreatitis was so debilitating. I think he was the exception

> rather than the rule. I believe that Joey's pancreatitis was auto-

> immune related. He had a history of severe food and environmental

> allergies. Then the pancreatitis started when he was 5. And now

> that his pancreas is gone, he has developed alopecia universalis.

Of

> course, the best part is that now he is completely free from pain

and

> is growing and gaining weight and just enjoying life! We will keep

> your family in our prayers.

>

> Suzanne

Suzanne,

Your poor guy has been through so much! I'm so happy for him to have

relief now!

I feel the same way about Dr. Lillehei. He did Will's second

fundoplication when Will weighed all of 10 pounds. It took 10 hours,

mostly because he had to deal with scar tissue that built up from the

first one. I completely trust those hands! His bedside manner is

one of the best I've ever encountered. He is so warm and

compassionate and takes such time with us. I will keep Dr. Sethna in

mind if we are in need of a pain team.

Thanks!

Beth