to Emily’s mom

May 13, 2008 at 7:28 pm

So glad to hear the news. Get some needed rest for yourself. I am sure this has been exciting but also scary.

To Emily’s mom

June 16, 2006 at 7:47 am

I don’t mind questions at all, that’s how we all learn. I’m usually good at asking questions, my husband says I’m too nosey.

The dr. that we see is on staff at USA Children’s and Women’s Hosp. in Mobile, AL. Although Mobile is not the biggest city, the hospital is a nice size. I think it’s 5 floors.

Also, the dr. is treating a 12 year old girl in my area. How strange could this be–she takes swimming 1/2 hour before my son does and our pt introduced us. With CIDP being so rare, can you believe that? She was diagnosed around the same time as Dell. She had been going to a quacky dr. in our area, not a children’s neurologist.

I do want to gather some more information about a more aggressive therphy and present to the dr.

Thanks for everything. Lori

To Emily’s mom

June 15, 2006 at 8:40 pm

Thank you for your latest email and questions. I already typed you a long reply and for some reason, it didn’t take. I’ll try again.

I called the dr. again today and he said come right then. We are 1 hour away. We have no pediatric neurologist on the Mississippi Gulf Coast. Dell was misdiagnosed in Birmingham at Children’s and we also saw another quack in New Orleans, twice. My gut feeling is this guy is a great dr.

The reason I email him is it’s easier than talking to the operator. He’s in an office with lots of doctors. He’s also a computer man and must check his email often. He told me today he likes me to email him. He usually gets back within 6-8 hours.

These are the questions you asked:

-Dell has always gotten each treatment around 30 days apart
-We see the dr. each month, when he’s receiving the treatment. He usually spends around 30 mins with us, writing orders for bloodwork, etc.
-Dell receives speech, pt and swimming
-Dell weighs 21 lbs and last week received 200 ml

I am also wondering about the different brands on the market. He’s had Baxter and Carimune. We might have had another brand before we started keeping up with it.

Thanks for concern,