Wednesday, January 16, 2008

Tottie's Eyes

Today we saw Dr. Goodman for Charlotte's eyes. We went in with lots of hope because for 10 days we have been taking pred forte ORALLY in addition to her pred forte in her eyes as drops hourly (every other hour in the right since it had improved) & started MTX shots (but we are only on our 2nd week).

Diagnosis: Right eye shot back up & has joined the left eye & neither one is cooperating on being controlled.

Dr. Goodman got Dr. Kingsbury on the phone & they talked about next steps. We are going to up the amount of pred forte ORALLY (2x a day) & double it (from 2.5 ml to 5.0 ml), and go back to hourly drops in both eyes. We will go back & see Dr. Goodman in a week.

Yes (Marmee) we are on week 2 with the MTX shots & we dont see the benefit of that drug for 6-8 weeks, but Dr. Goodman was hoping that the ORAL pred forte would have helped out.

We had a SLEW of questions for her that I had emailed to her so she was prepped before we got there & she was really great, she clearly had no other place to be than right there explaining & being empathetic.

Ryan asked "Are we your most difficult patient?" and she was quick to answer yes. And then backed up & said "Well there was this boy... but he would get controlled & then shoot back up again. I just want to get this under control."

We asked her if she was familiar with Dr. Stephen Foster with the Uevitis Foundation in Boston & she said "oh yes!" and then said that she has been doing this for 20 years & has seen more patients since Dr. Kingsbury has come to town. Our questions had a range including looking to the future & I think she really didnt want to project too far, because as I shared with Ryan, I feel like its talking about being in the World Series when you just played your 1st game. We really have to get them under control before we start understanding her battle as she gets older.

Ryan joked that we were thinking of taking our summer vacation to Boston & she was very supportive of that but also feels that we are on a very aggressive track, but that there are more drugs to try. Dr. Kingsbury said, "We just dont usually pull these tricks out of the bag so early, but she may need that." So! We will give it another week and see what we can do!

When I kissed Charlotte goodnight I told her she needs to tell her eyes to get better! Say "Get Better Eyes!" She said ok! I told Ryan that if i ever met Iritis in a dark alley it wouldnt be pretty. We were both pretty mad leaving the appt. Just mad at the illness, you know? I am thankful for my sweet neighbor who lets Ellie & Emma come over & play while we go to these appts so we can focus on what she's saying. And I was thankful Ryan was here for this appt becaues he had our questions & was taking notes the whole time (from our 3-ring notebook!).

We are not discouraged, you cant be, that doesn't do any good. But its ok to be mad & we were & then I went running with the run club out in 33 degree weather (but its dry so i will take that any day) & would sprint between my pace for Tottie ("BECAUSE WE CAN") & Ryan just left for the gym too... It just sucks. The hourly drops suck, the fact that the iritis is such a fighter sucks. YEP IT SUCKS! SO! It sucks & that's all i have to say about that.
I just found this site & am sending a private message to the moderator of the site. He is a retired...? & seems to know about Dr. Foster & specialists. One mother said she knew of specialists in Portland but now her son is a UofO student & wanted a specialist in Eugene for him. The moderate said that he knew NO specialists outside of East Coast, California, Utah. So there are no Uevitis specialists in Oregon/WA? I am sending him an email now...

On to other things...

This weekend we see the play "LILLY & THE PURPLE PLASTIC PURSE" & I am very excited for the girls & for me! I love Lilly, she's a spunky, smart & ecclectic little mouse who loves to look fabulous & loves her teacher & loves school! It should be fun for Emma & Ellie & one other little freind that we need to invite (Daddy is staying home with Tot).

On a shopping note (because really, what would a blog entry be without a shopping find? and it just really the spirits!), can you believe that the airport Costco had MAMMOTH CROCS?! I wasnt there, my girlfriend was, called me & said "they are going fast, everyone has a pair in their cart." Well they are pink like what Charlotte got for Christmas & both Emma & Ellie wanted a pair, so that will be the "shoe of choice" for the next month or so! They were very excited to see them! Very cute pink with fur!! Yum!

Ok I am off to research more & then to bed! Tomorrow is pilates (cross training day). PS My sis-in-law works for BEA, but I havent heard what this means for her... AND PSS, the debate in Las Vegas was great for all 3! AND PSSP, that whole hype about Katie Couric outtakes... I didnt see the hubbub. I just didnt see it... Ok now it really is goodnight.

1 comment:

Lisa Milton said...

Zack went to see Lily today; can't wait to hear about it.

And I've got to say: anger can work for you. Illness sucks, hands down, and I say give it hell.

Take care, all of you.