Wednesday, January 30, 2008

2nd Day = FANTASTIC

Today was met with such anxiety, you can only imagine after Tuesday. When Charlotte saw Emanuel, she cried a little, "But i dont WANT to go to hostipull"

When she walked into the Peds Ward, she waved to her adoring fans & took a gift that our new nurse friend Jody had brought her (Oh my word Molli, I about cried, that was so sweet!). That helped so much! Why didnt I think of a new toy for each day to keep the mind away from the task at hand. I told the nurses that Tot was "ready to be checked in for her spa treatment!" They said Dosha would be more fun, but I asked them not illude to that to Tottie!!

There was a little bit of sadness from Tot when they hooked her up, but she already had the IV in her from the day before (she had no idea - out of site, out of mind - thank you leg warmers on arms!) and so they just hooked her up & away we went!

Thank you to Dana for the DVD player, she just sat on the couch, watched Elmo Goes To The Potty (thank you neighbor Ryan!) & she still had that laboring pregnant woman attention span, but it was far less frequent as the day before. Ryan & I actually got to sit in calmness, & we focussed our discussion on future vacations! Why? Cuz it helps to focus on something FUN!

And when they came to check her vitals (at least 4 times during the session), it was a CINCH! and her pressures were GREAT today! She was so much calmer, accepting & so it all went... FAST (like we had hoped), CALM (like we had hoped) & overall ... a Dream.

Tomorrow - not a problem!!! Last day - we will celebrate! No matter what the outcome, you celebrate it all & tomorrow we definitely celebrate this STEP!

On my freak out this AM: Emma woke up vomitting. twice. But like a big girl, she went straight to the toilet to do the deed (thank you!).

And thank you 1FG (1st fairy godmother Cindy!) for the advice on "Clean that bathroom - get rid of the germs" because i was freaking out about Charlotte. I lysol'd the entire house, kept Emma contained in front of the playroom tv on that couch & explained to her about Charlotte's body not being able to fight the icky bugs that got into Emma's body, so we have to keep her healthy!" And 1FG - I SCRUBBED their bathroom tonight! Then I SCRUBBED my bathroom tonight! Then I LYSOL'd the entire house!!! Yes, Dad, you should have stock in Lysol! Is there anything better than the smell of chlorine bleach & lysol?! AH CLEAN (& sure burn the lungs a bit in the process!)

Ok! So tomorrow - NOTTA problem! YAY :) Tottie is AWESOME, amazing, a trooper! A little wiggidy WHACK on the steroids, but still a soldier & inspiring! Yes, I love her but she is wiggidy whack right now - one minute she is CRYING hysterically (for not a real apparent reason) & the next she's snuggling into you & then telling you something funny & laughing hysterically. Wow, the funny farm called & wants you off the ROIDS Tot! Should I sign her up for t-ball, would they help with that??!? Can you imagine ?!?! :) HAHAHAHA!!!

I will post pictures in a few of her runnign around Emanuel after her session today. i was just so happy at the HAPPINESS in her, I just started taking pictures of her joyous running! "Your turn mom!" Not in these stacked wedges my dear :) HAHAHA!

Tuesday, January 29, 2008

Not so fun

Facts & feelings, right? So let me get to the facts.

Today: day 1 of methylpred treatment for Tot.

Getting there was fine, she knew we were going to say HI to Dr. "Keen Berry". But she was cool! Still very proud of her binky! Saw Kingsbury before, he did a body check, all looks great. She's gained 2 lbs in a month - blame the steroids. He could see it in her cheeks too. I wondered what that was about, if we were just going through a chubby cheek phase, but then walking down the hall of the Day Peds Center, you saw them ALL with chubby cheeks, babys, kids.

She wasnt even happy to get her height done or weight done... this is an indicator of what is to come. But thank goodness i brought the leg warmers for her arms, it helped get her mind off of what was going on with the arms. Yay, one point for mom!

So... serioulsy the opposite of fun. She was tired, but so not happy that she wasnt even hungry. They hooked her up & they did a good job with that & that was fine, we worked through the screaming. And after we got her hooked up we met my HS girlfriend Molli (follow me here), Molli's husband's sister. So Molli's sis-in-law is a Peds Nurse, she came & found us, was SOOOOO sweet, so supportive, oh my word, I hope she is there tomorrow!

So back to our room, where we brought DVD's cuz they said that they had a player, but one broke & anotehr patient had the other one. SO! we were left with THEIR Vhs choices... i didnt even think to bring vhs movies. So Tot had us up & down like 8 times 5 minutes into every movie "I dont like this movie daD!"

So here's the machine that Tot was hooked up to (Yes, Ryan's company sells them... you gotta love the schooling from Ryan if you ever get the chance to hang out in a Dr's office or hospital wtih him!). And hopefully tomorrow will go better, but he had this med, slowly drip throughout an hour. Tomorrow, speed it up to 1/2 that - 30 minutes.





See how (not) happy she is?!
THEN! After it was all done - her vitals were too high for their liking, so they gave her this other drug to make her liver pump out the pee, so she would stop retaining so much fluid. By now Charlotte has pretty much had it. She's done with this place. She's let everyone know that. She's waving goodbye like she will never have to see them again. Tomorrow is going to SUCK!

A. I hope that tomorrow goes faster.
B. I hope that her vitals / pressures are lower (i dont know how to help that, I just hope - they said try & keep her calm. Uh huh. Cuz today I just watned her PISST & angry & that's what we were shooting for right?! UGH!)
C. I hope that Charlotte likes all the VHS videos & borrowed DVD player (thanks Dana) & dvd movies mommy brings!!!
D. Can i now stop going on "snack buying binges" at every store I go to??!?!? Even online. i just want to bring it all....

So we have left to go: Wed & Thursday... We asked Kingsbury "What will you see as successful on Friday?" He said clear or a trace in the eyes. There's just not enough cases that are just like Charlotte's to compare what's normal, what would happen after this... Charlotte has not been the norm....

I admitted I dont want to see a trace, I dont trust a trace. and then we talked about how a trace could be different from one dr. to the next, that we need to find out from Goodman how she would define trace. To me, I guess a trace is a trace, I want it clear. I want this done, I dont want any lingering partiers at all - everyone go home. Because the party is over, & we need to keep you all at bay, i feel like if you have one, they might invite their friends again. Not cool. Not in Charlotte's house.
MOMMY WANTS THE UVEITIS TO STOP PARTYING AT CHARLOTTE's!!! WE ARE DONE WITH YOU!!!!! TWO MORE DAYS - that's all she can do, I dont know if we could do this again. Lord give me strength just to go back tomorrow... And help Charlotte to understand we have to do this & PLEASE make the process go quick!!!!

Monday, January 28, 2008

Today starts the week


So today starts 3 days of hanging out with Tot at Emanuel & just saying the words "hanging out" I smile because I think thats one of my biggest anxieties. Does a 2 1/2 year old "Hang Out?!" you know the answer to that.... And ESPECIALLY you know that if you have met Miss Firecracker herself! I know the nurses at Emanuel are like no other, I know they are amazing, I will just have to experience the 1st day to know & understand.

It was nice to have some friends over tonight, so I am not stressing about tomorrow, it gave all of us something FUN to focus on! This is a pretty cool decorating product: http://www.haveawordwithme.blogspot.com/ And Ryan was sweet enough to share in the girls celebration by opening up a favorite wine of his parents! YUM~

And TOTTIE!!!! She went POTTY tonight!!! Oh my word, i freaked & I would have been DANCING & SCREAMING & CELEBRATING even bigger than i did if the party wasnt going on, but i didnt want to scare the girlfriends! She did it ON HER OWN, told Ryan she needed to go potty, he put her on, she didnt do anything & got off, Ryan told her that wasnt anything, and so she got back on & went tinkle!!! FANTASTIC!!! I gave her SMARTIES candies & she was pretty happy with that!! The friends said "Erika what if she POOPS in the potty?! What do you give for that?!?!"

Are you kidding me?! A PONY!!!! Momma will get you a pony :) AHAHHA!!! Riley was about the size of a small pony, want one of those?!?!?! But that's what we are working towards, we will investigate Lab puppies once we get this potty training on a flow & once we get this uveitis under control too!

Let's hope the schools dont pull another weeny "snow day" tomorrow because we had today off, but they still cancelled the teachers training & school was cancelled for all the districts around us. I have no clue why, I am sure there was something somewhere, but there wasnt enough for us to play outside. Ryan got up, went to starbucks & came home, not an issue. But if tomorrow is cancelled... oye, that throws the entire schedule off with our hospital visit... wont even think about it unless i have to. SO!

I am going to take pictures tomorrow, I am going to document our day. I expect nothing but positive things, it will all flow, amazing dr., amazing nurses, supportive facility, Ryan & I together for support to help Charlotte be ok with the sitch. Have to wake up tomorrow, make lunches, get Emma on the bus, Ellie to Blake's to play & head in. I have Tot wearing a tank top tomorrow, with leg warmers on her arms. I worry that the removal of clothes could send her offf, so trying to eliminate that. And thank goodness her new Binky Bling arrived today, just in time! She was showing it off to everyone "Look my new binky!!" Very proud! It's gorgeous Annie, & gave the girls & I another good reason to talk about how we miss your girls! (i would link to Annie's site, but its not up :(... oh annie!!!).

Oh super quick, the Physical Therapy on Saturday was great - 1:1 with the therapist who led us through some activities to show us how to identify if charlotte is favoring or having pain (& not sharing it). She did say that one calf is a bit bulkier than the other (we didnt notice till she did) based on earlier compensation, so she gave us some exercises for that to help her build back the muscle. It was good, I appreciated it! She gave us things I would not normally think to look for or help facilitate.
We would have done a quick through of dwtwn nordies, but our babysitter called to tell us our driveway was a sheet of ice! So we drove straight home to see that the rain that hit the windows had formed a complete sheet of ice on the house shingles too. The driveway, sidewalks, all ice until early afternoon. It was so bizarre. Welcome to January!

Sunday, January 27, 2008

Quote of the Day


Emma - Age 6


I am going to be Miss America when I grow up so Poppa doesnt have to pay for my college!

Thursday, January 24, 2008

From Dr. Kingsbury:

Mrs. Cox,All very good questions ...First, when I talked with Dr. Goodman, she we had discussed the possibility of having her move your Wed appointment to Friday down in Lake Oswego. The reason, I thought it might be best to see Charlotte after she had completed the 3 infusions in hope of determining level of response. We then thought that Julie Yu might be able to see her once, perhaps 10 days or so thereafter, while Dr. Goodman is away. Then you could be back on track with Dr. Goodman on her return.

As for methylpred, I will likely request that the first infusion be administered over one hour. Yes, it could be increased to go over 30 min., but I'd prefer to do it over 60 min with the fist one. No special prescautions/instructions needed prior to the infusion, except that you could hold off with the oral steroid on those 3 days of IV steroid. I will talk more on that next Tues; however, just forgo the AM dose of steroid on Tuesday.

By the way, Peds Day Treatment unit tel #, should you need it, xxxxx (I think that's correct ... or xxxx). As for instructions after the infusion, we usually like to keep her about 30 min or so just to make sure she's OK (i called them, they have us booked for 2 hours each day). The medicine does promote a metallic taste in the mouth which can be masked with some high-flavored food item. Obviously, Charlotte would not be able to let you know about that. Normal diet is otherwise fine. When on high-dose steroids, either orally or IV, it's a good idea to limit salt intake by not adding salt to food items, and trying to avoid foods with a lot of salt.

As for timing, I'd hope for a fairly rapid response. Therefore, I was thinking that a Friday visit with Dr. Goodman would likely make more sense than a Wed due to the fact that we would have 2 of 3 infusions completed. If it is too difficult for either you or Dr. Goodman to rearrange schedules, then stick with Wed. I hope that answers most of your questions. Dan Kingsbury
---------------------------------------------
So next week looks like Tues - Thurs for 2 hours each day at Emanuel. Then Friday its down to the south for our eye appt (yes i am being more generic, thinking of making this a private site... thinking way too much). So its a busy week.

Wednesday, January 23, 2008

Tot's Eye's Today

I will let Dr. Kingsbury give the recap of today's eye appt:
Mrs. Cox,

I just got off the phone with Dr. Goodman and she seemed encouraged by the drop in inflammation, but it is still present. She's inclined to go ahead with the methylpred infusions. I believe she will be calling you to discuss the plans.

I also just got off the phone with the nursing staff in the pediatric day treatment unit and they could perform those infusions next Tues, Wed, & Thursday. Monday seemed a bit busy for them. I see that you have an appointment with me at 11 AM (on Tues) and they would take her immediately after we finish the appointment. How does that sound?

I will be in a mandatory training course all day tomorrow, but should be able to check emails once or twice during the day. I will be in the office on Friday. Based upon Dr. Goodman's assessment, I think we can stick with our Tuesday scheduled appointment.

Hope this works for you.

Dan Kingsbury

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
My response:
Hi Dr. Kingsbury,
I am so glad Dr. Goodman caught you today! Yes, we felt a little encouraged, but we had that slight raise of the eyebrow indicating “how good do you think it really is & … dontcha think its been a long road to get to just a bit better?” You know?! So none of us were jumping up and down & Ryan & I didn’t want to have a pre-mature celebration, but at least it wasn’t the same or worse. SO! There was our silver lining I guess.

So yes, we agree with you & Dr. Goodman & it sounds good moving forward with the methylprednisolone. We agree and don’t want to be too optimistic, but hope that since we have seen improvement with the increased oral pred forte, that maybe this IV of methylpred will be the kicker, and maybe the remicade wont be needed? Is that too optimistic thinking? You can tell me if we shouldn’t even think that far ahead.

Thank you for setting that up for next Tues/Wed/Thurs. We will meet you at our scheduled 11am appointment on Tuesday & go from there. We have an ongoing Wednesday @ 415 eye appt w/ Dr. Goodman. Do you think we should keep that for the 30th?

Any idea on overall timing to book out for each of these treatments? You mentioned the actual pulsing of methylpred takes 30 minutes, but is there time spent after for observation of any kind? Is she allowed to eat normal before coming in? And this will be outpatient each day, you don’t think staying at the hospital for observations of possible side-affects is necessary? One more question of the methylpred before we see you on Tues: You said that remicade is pretty immediate acting for results, what’s the timing for results with IV methylpred?

Ryan & I will both be there on Tues & Wed, Thursday he has to travel to SFO, so knowing all of these details ahead of time will help me in planning for the other two sisters who will be in preschool/1st grade.

Thank you much!! We appreciate it! Have a good day of training!
Best, Erika
-=-=-=-=-=-=-=-=-

SO! Not GREAT but we werent expeciting great. lowered inflammation AT all is more than i expected. So that's good. I didnt leave ANGRY like we have in the past. That's good. I dont know what to expect with what this time in the hospital iwll look like or what it will be like once we are home... so I get a little sick to my stomach when i look at my calendar & see that I have a PTA board & general meeting on Tuesday night (her 1st treatment) & then have plans to head out for the weekend with the high school girlfriends on Friday - Sun. I just have no clue of what this is going to look like feeling good about ANY events going on outside of those 3 days of treatment & really dont know what to do about it. Maybe Kingsbury's response will help me to understand what i will feel comforatble in doing/not doing.

I hope that doesnt sound selfish that i am worried about my commitments for the week, because this isnt about me, its about trying to figure out how to be fully focussed on Charlotte. But i dont want to be unnecessarily overly obsessive about the situation... & yet this isnt non-chalant. I dont know how you are supposed to feel but i feel like i am babbling, so i am going to post & head to bed!

Happy Birthday Mom :) Love you & miss you oh so much!

At home...

I got this brownie mix @ whole foods becuase the girls begged for it. What they didnt read in fine print was "Whole Wheat, no trans fat, extra bran added." Terms you shouldnt read on a BROWNIE box! But if they are beggin' for it, what a perfect opportunity to let them make the brownies themselves & when one makes it on their own, usually one is more apt to eat it... let's try this theory out!Emma reads the instructions.
She mixes her wet w/ her dry...

The Black Widow Spider (ie little sister) cozies up in hopes of licking the bowl!

And its off to the oven

And the verdict.... I dont have any pictures of the final product becuase they were SOOOO good!! Very good! I highly recommend this box!

And here's Charlotte to give us a cheer for how much she likes her big sister's brownies AND the OSU Beavers:

Monday, January 21, 2008

Getting them together

Here's my email to Kingsbury AND Foster:
Hi Dr. Kingsbury,
I have included Dr. Stephen Foster on this email (sfoster@mersi.us) so he can see our communication (see below for Dr. Kingsbury’s communication).

Dr. Kingsbury - I want to thank you VERY much for your response & your thoughts for Charlotte, in email & the call this afternoon! I know how deeply you are on our side, both Ryan & I do. Thank you for walking me through your thoughts today.
Dr. Foster, I want to thank you as well, from the slopes of Aspen you gave us very good points to discuss & we appreciated it immensely. Hope there was some good snow for you this weekend!

At this point in time, it sounds like both Dr. Foster & Dr. Kingsbury on the same page for next steps. Please check me on this:
  1. Wednesday 23rd: Ophthamology appt.
    If the oral pred forte (5.0 ml in PM, 2.5 in AM), does not make a significant change by Wednesday (she is a +2-+3 in both eyes currently) then we will get into Kingsbury later this week (earlier than our schedule 1.29 appt) to schedule intravenous next steps. (MEDS: Still on MTX / week 3, as well as hourly pred forte drops in each eye)

    Next Drugs:
    + Methylpred for 3 days intravenously while we are waiting for insurance to ok the use of REMICADE (which Kingsbury/Goodman will make the case for this treatment.)
    + REMICADE will be what we go to (answer in 1-2 weeks from insurance company if they will ok coverage of it)

    Dr. Foster, we would appreciate your knowledge on our team & want to make the trek at the most opportune time. If we are in consensus for next steps, I believe we would want to have Charlotte examined after this attempt. Please share with us your thoughts!

    Thank you again! Best, Erika

    -----Original Message-----From: Kingsbury, Dan :LPH Peds

Dear Mr. & Mrs. Cox,I share your disappointment. I concur with Dr. Foster's statements on next levels of treatment. After talking with Dr. Goodman last week, I had planned to offer IV methylpred if there was no improvement with this week's visit. I was also planning on talking to you about TNF inhibitors (i.e. Remicade) at the upcoming clinic visit. I have a number of patients on Remicade for this problem, and so far, ALL have responded. The only reason that we have not gone there yet, is that typically we follow a systematic approach with topicals followed by systemic (oral or IV) steroid treatment and methotrexate. In rare intances we have to ramp up treatment to the degree your daughter has commanded so quickly. Remicade, and other TNF inhibitors, are not considered first line therapy in juvenile arthritis by the insurance companies. To make matters worse, these medications are NOT approved specifically for the treatment of iritis associated with JRA. However, there is a large body of scientific evidence to support the use of these medicines in the treatment of JRA-associated iritis. The pediatric rheumatology community, through the CARRA organization, is currently involved in a clinical trial studying Remicade in JRA-associated uveitis. I believe that we are building a solid case to request coverage of Remicade by your insurance company, assuming that we do not see improvement very soon.

Dr. Foster is right, in that methotrexate takes time to kick in, quite possibly longer than 3 months. I would not wait that long if our current actions do not result in substantial improvement.I appreciate the fact that you have included me in the email conversations with Dr. Foster. I have had two patients see him, one just last week! I would not dissuade you from going to Boston whatsoever. I just want you to know that I have a detailed plan of action, something you may not have appreciated since I was waiting to discuss treatment options after Charlotte is evaluated by Dr. Goodman this week.

I am not in the office today but will try to reach you by phone. Dan Kingsbury

P.S. for some reason on this web-based email system, I cannot find Dr. Foster's email to add to the "cc" list. If I search for it, I risk losing what I have written. Feel free to forward my reply his way with any additional communications you have.

Doctors aligned - check!

Kingsbury (ped. Rheum) wrote a lengthy email to me re: Foster & next steps & we just spent 37 minutes on the phone. Ryan – remember when Goodman said we weren’t her HARDEST case, there’s a boy they are having problems with, but at least he’s been controlled at one point or another? That family saw Foster last week on Thurs or Fri, so Kingsbury will be talking to them tomorrow to hear what foster recommends as next steps. WE will want to talk to him about that when we see him.

Re when we see him: Goodman will call him from our appt (wed 23rd) & if its not positive – he doesn’t want to see us on Tuesday (29th) , he will want to see us sooner (later this week) so we can get in NEXT week to start the pulsing of the Methylpred (see below)


Here’s a synopsis of what he said:

  • Don’t want you to feel that I am not in your camp, I will do everything…
  • Its on our agenda (CARRA & other ped. Rheum’s) that we are WELL AWARE (more than ophthalmologist) of trying to make inroads of JRA induced Uveitis.
  • My concern is that we use medicines that are least traumatic to Charlotte at her age & stage of issues. The drugs I am recommending are not without their inherent trauma. I want to make sure that we’ve give her the chance of less traumatic treatment
  • That said, I’m not going to wait for mtx to kick in – try a different strategy

Next Drugs: Remicade & myra (I didn’t get this correct) are probably better

  • REMICADE: It’s not standard of care by insurance companies. It’s approved care by ped. Rheumatologists – but this will have to be made a case to insurance & Goodman & I will make the case, “We cannot wait for this for this reason, there for we are making the case for this treatment”.
  • methylpred can be intraven. but remicade will be what we go to (answer in 1-2 weeks from insurance company if they will ok coverage of it) – while we are waiting for that we could try methylpred. That’s a cheap medicine.
  • How it works: for 3 consec. Days – get her in upstairs (one floor above his office) , pulse them hard for 30 minutes each day. Its where the cancer kids go. (RYAN – this is what we would do at the beginning of next week if we saw no improvement on Wed).

Re Teamwork:

  • give you the understanding that, & this is my take, all rheumatologists NEED the ophthalmologists to guide us on the fruits of our labor & we will react according & make treatment strategies.
  • we use all the medicines that ophthalmologist never would. So you have a situation in this condition that a ped rheum usually manage the drugs, but we need the input of the ophthalmologist of which way its going
  • we do medical management – and ophthalmologist tells us how the drugs are doing.
    RE OHSU – Rosenbaum / he’s an adult guy & is NOT an ophthalmologist. Eric suher – he & I have shared several patients & he’s turned all the medical management over to me.
  • (SHOULD WE SEE FOSTER NOW? Kingsbury says) Best use of your resources - if we went down my pathway & still got no response. But it sounds like we are on the same thought process of where to go next.

MY NEXT STEPS:
Send Kingsbury’s email & recap of our phone call to Foster & ask “Do you agree?” For us, its not a matter of if we see Foster, it’s a matter of WHEN. So I want to hear his thoughts on Kingsbury’s medication recommendation & get consensus around the table.

And since all of this has taken all day, Charlotte hasnt taken a nap, and Emma & ELlie are trying to build a fort in the living room & I can hear their unhappiness with little sister who is not being cooperative with the building. But they are good sitters, now I hear tickling (away from the fort). Emma is going to bake some brownies tonight (all by herself), so I am headed to turn the oven on!!

Saturday, January 19, 2008

Dr. Foster responds 2nd time

from his VACATION!!! The good dr. responds! I know my email back to him was very loaded, but he still responded. I am now going to put this all together & shoot an email to Kingsbury to talk about action plan.


Intravenous is in the vein, not in the eye.

Steroids should be used as has been suggested, PLUS consider the intravenous for 3 days in a row.

Play the eye doctor game at home: flashlight, chin on edge of table, shining light in eye with practice keeping eyes wide open, very still, counting to 10. Let her do it to you too.

Get picture cards from your eye doctor and practice with he at home so that an accurate vision test can be done.

Come see me if and when you can arrange it.

Stephen Foster

PS: I'm skiing in Aspen right now.

Friday, January 18, 2008

I reply to Dr. Foster

I want to give all this communication to our Pediatric Rheumatologist to get his feedback on the conversation. I like the questions Dr. Foster asked. Dr. Wong said go on MTX, which i had already said we were on. I responded to Dr. Foster with:

Dear Dr. Foster,
Thank you so much for your quick response. We appreciate & value your thoughts! My husband & I are very much in this fight to win for Charlotte & appreciate you being on our side of the battle lines! In answer to your questions:


Our daughter has not taken an eye test. When our ophthalmologist looked into her eyes, she said she isn’t a full 20/20, but that’s “normal for her age” & that was at 26 months.

At our last appt, the severity was +2-3 in the left eye & +2 in the right. Charlotte has not been happy about the slit lamp exam, but has done it every time, sitting on my lap since her 1st appt in November. She understands that is what she needs to do. This degree of inflammation has remained constant since 11.14, although the right eye has shown slight variance, not enough to make a difference as we understand it.

You mention that (we need) “to put out the fire quickly” & that 1st attempt would be intravenous SoluMedrol. Is that the shot in the eye? Our Pediatric Rheumatologist mentioned that form of treatment months ago when we were first diagnosed.

But on timing: In your estimation, knowing that we have been at this level of inflammation since November 14th, would you say that the Pred Forte topical treatment is not going to cut it no matter how long we continue? And we are on pred forte orally now as well (12 days), and heading into week 3 of MTX. Should the pred forte orally & topically be given a chance with the MTX & if so how long? Or does it appear that Pred Forte orally/topically isn’t going to be the solution if we have been on it for the amount of time we have.

I know that our ophthalmologist is VERY willing to work with you as a member of our team. I would love to hear your feedback & also share this with our Ped. Rheumatologist Dr. Kingsbury so he understands what we would like to do in moving forward with our action plan for Charlotte.

Thank you Dr. Foster!
Best, Erika Cox

Dr. Foster

Dr. Stephen Foster responded too! I am shaking right now... I am just so pleased they both responded today. Havent even gone to talk to Ryan about it... headed downstairs to talk this over!

From Dr. Foster:
Dear Ms. Cox:

I am very sorry that you’ve been dealt this hand. You have your work cut out for you, and a long row to hoe. But staying in the fight is very, very worth it; you can prevail, with your daughter having a lovely life as a result and you responsible for making that happen.

Couple of questions:
Has she learned to take a vision test, and if so, what is the vision in each eye?
Has she learned to cooperate with the slit lamp examination, and if so, what grade of inflammation (cells in the anterior chamber) were present in each eye last visit?

Methotrexate takes time to begin to have any effect, sometimes up to 3 months. If there is severe inflammation now, the only things that can “put out the fire” quickly are intravenous SoluMedrol and in some instances intravenous Remicade.

I would be pleased to consult and then try to collaborate with the doctors at home by e-mail going forward in time.

Sincerely Yours,

Stephen Foster

Stanford

I also sent that same email to a specialist at Stanford: Dr. Ira Wong & got a response:

You are lucky to live in the same town as Dr. Rosenbaum. He is both a rheumatologist and an uveitis specialist and has created a group of well regarded uveitis specialists like Justine Smith and Eric Suhler. He has an international reputation for his research. Without knowing more I am predicting that Dr. Rosenbaum will start methotrexate on a weekly basis. In my practice if I cannot get complete suppression of the inflammation with steroid eyedrops, I will switch
to methotrexate to avoid the complication of steroid-induced cataracts. Also the methotrexate will treat the joint inflammation. Dr. Foster's website, uveitis.org has a webpage on methotrexate which isinformative.


Prednisolone acetate 1% is the generic form of Pred Forte. In the past there was a difference between the generic and the brand product. Recently, the generic companies learned how to grind the particles to be as small as Pred Forte so there is usually no difference between the two preparations. If there is any problem getting to see Dr. Rosenbaum, I would be glad to see your child. Or a closer alternative, is Dr. Russ Van Gelder, who recently took over the chairmanship position of University of Washington, Seattle. Russ is another premier uveitis specialist.
Sincerly, Ira Wong

-=-=-=-=-=-=-=-=-
So we are ON mtx, yet on the topical & oral AS WELL. ??? Wait for dr. foster
I sent Dr. Stephen Foster the following email.

Dear Dr. Foster,
I am the mom of a 28 month old girl who is ANA positive, has pauciarticular JRA (4 joints since being diagnosed) & is battling anterior uveitis. I have appreciated your site & your information & would like your advice on our next steps.


Our pediatric rheumatologist is Dr. Daniel Kingsbury at Emanuel Children’s Hospital in Portland, OR. Our ophthalmologist is Dr. Shawn Goodman, who knows of you & your work. She is not listed as a specialist.

Below is our daughter’s history, & where we are today. In a nutshell:
© Since November 14th (our 1st eye exam since being diagnosed with JRA), we have not been able to get either eye under control using hourly topical treatment (Pred Forte – but used the generic prednisolone).
© We are on day 12 of orally taking pred forte (5 ml in AM, 2.5 ml in pm)
© We are headed to week 3 of MTX (only 2 injections so far)

Our Pediatric Rheumatologist said there are more things to try, however, based on our story & what we are battling, we understand that time is not our friend & we would appreciate your feedback on next steps. My question to you is – do we come to Boston? Do you recommend Dr. Rosenbaum in Portland (what do you know about him) or do we go to Stanford (what do you know about Dr. Ira Wong?)?

Thank you for your feedback, support & your work!
Best, Erika Cox (Mom of Charlotte Cox DOB 9.24.05)

James T. Rosenbaum, M.D. Professor of Medicine, Ophthalmology and Cell BiologyAssistant Dean for ResearchHead, Uveitis ClinicDirector, Inflammation ResearchCasey Eye Institute3375 SW Terwilliger Blvd.Portland, Oregon 97239-4197

Ira Wong, MD, M.S.
Background PublicationsDirector, Uveitis and Ocular Immunology Dept.Francis I. Proctor Foundation Website95 Kirkham St.San Francisco, CA 94143-0944Clinical Professor of Ophthalmology, Cheif of Uveitis ServiceStanford University Medical School, Stanford, California

10.19.07
Dr. Daniel Kingsbury
“She obviously has JRA”

11.8.07
Dr. Kingsbury
both knees are injected

11.14.07
Dr. Shawn Goodman
Diagnosed Uveitis
Pred Forte (However we are given prednisolone by pharmacist & don’t realize it till 1.16.08) hourly every day for 2 weeks, both eyes

11.20.07
Dr. Goodman
Both eyes show improvement
prednisolone every 3 hours for both eyes

12.12.07
Dr. Goodman
Both eyes shot back up to being inflamed
Back on Predno every hour for both eyes

12.20.07
Dr. Kingsbury
he discovers left wrist & right ankle

12.28.07
Dr. Kingsbury
Both joints (wrist/ankle) are injected

1.2.08
Dr. Goodman
back on prednisolone every hour in left eye, every 2 hours in right eye
prednisolone hourly in left eye
Every 2 hours in right eye

1.6.08
Dr. Kingsbury (phone)
Pred Forte orally (for 1.5 weeks) till we see Goodman NEXT week (we also just started mtx this week)
2.5 ml oral Pred Forte

1.7.08
MTX weekly .4 ml

1.16.08
Dr. Goodman
Right eye has shot back up & left eye hasn’t decreased it level of inflammation. Realized Charlotte was NOT on pred forte, but the generic form of prenisolone. Recommendation from another eye dr (neighbor) was that pred forte is better, get on it, so Dr. Goodman wrote out our prescription for NO SUBSTITUTIONS.
Up the dosage of oral pred forte to double amount. 5 ml morning, 2.5 ml at night.
Pred Forte in each eye every hour.

1.23.08
Dr. Goodman
Next appt

Thursday, January 17, 2008

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.

Thursday, January 10, 2008

Tornado was nearby

Yes, near us (about 10-15 miles NW) of us/Neal & Cathy, there was a tornado that hit down. I can't believe the damage. But we were fine. So very bizarre for SW Washington. We actually heard the thunder & said "?THUNDER?" We usually don't hear thunder around here till spring (when our weather starts conflicting with each other). All is ok with us.


I love being inspired & educated by friends! My friend Krista is a professional organizer & she came up with a great thought this year of instead of new years resolutions which can be a little bit on the negative side or daunting in details, raise it up a level and create a THEME for yourself for the year. I LOVE THAT IDEA! We are always working on things we could do better (cook healthier, have more patience, consistently exercise), so I took Krista's advice and decided to create my theme for this year. I am going to continue to noodle it this week & see if it continues to work for me or if i need to alter it in anyway, I then I will begin using it & sharing it!


Emma has been very excited about the author JAN BRETT this week & its always exciting to see them passionate about something they are grasping & soaking in at school! She & I colored tonight & I hadn't read "The Mitten" in quite awhile (from Marmee & Poppa) so i forgot the style in which Ms. Brett illustrates, but Emma was quick to point out that i needed frames around my page (around the picture), so i made an argyle frame (my favorite thing right now). Emma LAUGHED & said "that's cute mom but that doesn't look like Jan Brett." I appreciated her knowledge & her appreciation of my attempt to follow a style :)


She brings home a family journal every Thursday where she writes to one of us & we write back & she reads it in class. Today she wrote Ryan and asked, "Who are voting for? Hilaree or Obama?" And then she drew a picture of Hillary, Edwards & Obama!!


Ellie made "Stone Soup" today at Treehouse. And i have a hard time believing the story..."We made stone soup & it had one rock in it plus carrots, white onions, green beans, shell noodles, tomatoes... I think that's it. And i LOVED it. The boys didnt try it but all the girls did & we had it for snack & I wanted more." I am emailing her teacher and asking for the recipe for this magical soup because if Ellie is eating vegetables, I want to see this for myself!

Ellie, Charlotte, Ryan & I visited a kinder/preschool today for Ellie & Charlotte for next year. We havent had the chance to compare notes, but Ellie was very excited about it & it would be a supplement to going to our neighborhood public shcool for kindergarten. We recognized one girl in the class who practices that routine, private kinder in the AM, home for lunch, public school in the afternoon. This little girl is in Emma's pre-ballet so I am going to talk to the mom tomorrow about her research & experience.


Can Charlotte do a preschool??? Right now, these meds are really making her a little bit testy, grumpy, tired, needing a binky (binkee & bankee are the 2 things she cant live without). I told her no binky's allowed at preschool, but she had no interest in sitting still watching the class of 3 year olds. She went between my lap & ryan's lap acting very tired. She was GLUED to all the children when they were all together singing (the entire school meets 1st thing in the AM & sings together, kinders lead - sooo Ellie AND Charlotte's cup of tea - and they would be together which could help Charlotte with the transition).


I went to the eye dr. today for the 2nd time in 2 weeks to check on my "scratched cornea" and we put plugs in my lower tear ducts to help retain my natural tearing (? i have some?!). I have the dryest eyes & have since college (remember mom's weekend Gina?! I wore an eye patch & looked like a pirate). Hopefully the new plugs will help. It was fun to have just Ellie there, so i could explain what was going on & she intensely watched with great interest. Dr. or Nurse - something in the medical profession, I keep working on her, but she insists she will not have TIME to be 'at the dr's office" when she is a professional ballerina touring the world. I give in and say "oh ok Ellie... but if you tour the world, you know i will follow you & watch you on every stage." She's very ok wtih that. She's 5!

We shall see if we get to playgroup tomorrow (our favorite Friday thing to do for Ellie & Charlotte where 2 big gyms are connected and opened up FULL of toys/balls/bikes to play with) because I can hear Emma sniffing & coughing...

Ok just got done writing Alexis Stewart an email & Perfect Puree an email. I want to bring them together!! I am going to attempt to make the Pate de Fruits that Alexis made for her holiday gifts (see blog 10.21.2007 - 10.28.2007), but the puree she uses is imported. Perfect Puree is out of Napa & run by women (Local & Women driven! Let's support that!). Lets see if I get a respsonse from either, but it was an attempt for a worthy union!

Wednesday, January 9, 2008

Iritis or anterior uveitis



Education on Tottie's JRA induced eye issues: Iritis is inflammation predominantly located in the iris of the eye. Inflammation in the iris is more correctly classified as anterior uveitis because there is also, often, inflammation of the ciliary body.


When the iris is inflamed,
white blood cells (leukocytes) are shed into the anterior chamber of the eye where they can be observed on slit lamp examination floating in the convection currents of the aqueous humor. These cells can be counted and form the basis for rating the degree of inflammation.



New questions that need to be asked:
  1. what is her degree of inflammation?

  2. How much longer on the topical steroid (we've been on hourly since November 14th & now orally 2.5 ml 2x a day for 4 days) till you want her off (risk of steroid induced issues) & we go to plan B?

  3. What would plan B look like?
Any other questions you would ask?

Tuesday, January 8, 2008

MTX Shot

Last night we gave our first shot to Tottie with help from our sweet nursing friend Laura who came over & coached us every step of the way. A couple of things: Thank God for Riley dog who definitely toughened us up on the art of shot giving. His life & his battle with diabetes was such a gift to us that continues to teach & help us. Miss you Riley!



So! It wasn't super horrible bad. I did the shot giving, i needed to with Laura there so i knew how to do it & i could feel it being done. and there's something about doing it yourself, you know that it cant be that horrible if its you giving it. I don't know if that even makes sense.... but anywhoo!



Weekly now, every Monday evening will be shot time & I hope we start to see some great improvements with the eyes. We are on day 3 of the prednisolone orally & its not affecting her sleep habits (yay) but it has made her a little emotional which in turn is helping her sleep better! So all is going good....



Craftwise - went to Costco yesterday & they had this 18 piece snapware craft set for $18! (its the little things i know but...) its TREMENDOUS, so i organized my ribbons & flowers for my hair clip/bow making & will get back into it as soon as i have a handle on the scrapbooks (that's tonight - i love making these books online, it cuts out the hassle of printing photos, & spending time creating the pages!)



I swear I talked to Sue London herself today which was a THRILL, she was in INDIA (ya, wow!) & told me exactly how her shoes should fit, what color i should get (rhodesia?! what a name) & said that Martin+Osa in Bellevue will carry SOME. Wow!!



I am investigating birthday party ideas/options for Emma & will try & talk her into having a party at an art glass studio with her friends & make bracelets! How fun would that be?!

Saturday, January 5, 2008

Might as well face it

I'm addicted to paper (thank you robert palmer)! I love paper & I will put this on the left of my finds, but its too good to add without explanation.

Tis the season to start thinking about the Valentine's cards. Ellie & I went through the Current Catalog tonight & there was nothing there she liked. Last year, we took her picture (& Emma did the same for her class) & we put it on a business card (from Office Depot you can get packs of them that run thru the printer) & then hole punched twice to stick a pencil through & it said "You have the WRITE stuff Valentine - Love Ellie". Use it! Ellie wont do it again :) I already asked!!!

So in my online hunt tonight I found Carrotandstickpress.com out of Oakland CA & they have cute, classic, simple cards! FOR ME! I had to pick up some simple heart cards that can go for Valentines OR anytime cards! and then there is the notebook in the black versailles for my purse (cant wait for the opportunity to whip that out!). Ellie's hunt will continue...

And ... the post over there on the left of "cant find" - the shoes are Sue London's and we FOUND THEM! Found 4 pairs in my size at a shop in Belleuve, I sent cousin Laura out there (who is the same size, uh oh we are going to have to duke it out!), she bought all 4 pairs becaues they were on sale 1/2 price so i cant WAIT to see them tomorrow when Laura comes through town on her way back to school!!

Charlotte: We start the Methotrexate tomorrow & the oral predni. We have a SWEET friend who is a nurse who lives up the street who is going to come show us how to be strong & how to calmly inject Charlotte. A bonus, she is well versed in mtx in her experience, so we are feeling very blessed & good about her helping us for the first one!! So grateful!

Friday, January 4, 2008

Tomorrow a new day...

Today was a tough day. Didn't I say I wasn't going to be a turtle & hide? Well I got a little overwhelmed today. Not only with Charlotte (& talking with a P/T, nurse, future preschool - note to self, letting rings go to vm somedays might be a better thing) but with a negative community issue that has risen. SO! In order for me to get my ducks together tonight about changing my mental status for tomorrow & having a BETTER day, I came across this & wanted to share because it's a pretty neat exercise that would be interesting to do with our kids & help us ALL prepare to have a better day, a new day, TOMORROW! "Tomorrow is another day!" Thank you Scarlett!

Good Moo's: This is exciting to find: An organic dairy that delivers! I am going to call them tomorrow, this would be LOVELY!

And for amusement: When we were cleaning the house after christmas (yes dont look at the hallway TOO closely), the girls continued to practice their "show" in the hallway because "that's where the spotlights are." What a mess it was up there, but we took timeout from putting away the garland & glitter to watch "the show" :) That's Julie Andrews singing from 1957's version of Rodgers & Hammerstein's Cinderella - Classic!

Thursday, January 3, 2008

Add to that...


Talked to Dr. Kingsbury today about our moving forward with Methotrexate as our treatment of choice for Charlotte to combat the eyes & joints at the same time.


He suggested for the next two weeks we not only continue our eye drops (strongest topical treatment available, hourly for left eye, every other hour for the right), & start the methotrxate this week (weekly injections that show positive effects in 6-8 weeks), but also start an oral treatment (twice a day, once in the AM, once in PM).


Schedule will be:
Drops - next two weeks

Oral - next two weeks

Methotrexate - starting January '08 (age 28 months)


Side affects for oral could be moodiness, increased appetite & a hamper to her sleep schedule.


Hmmmmmmm.....

A lot to digest for the calendar. Sometimes you just want to be a turtle & hide for awhile, butcha cant! SO! Gotta get that chip on my shoulder & keep going.


So I signed up for a running group today to do 5K's! Gonna kick the running into high gear to help the flow of thoughts in my busy mind! Bad weekend for skiing - its going to be nasty up there, which is a bummer, cuz Emma is ready to go. It will be nice to pick up Ballet tomorrow after the long holiday, both girls enjoy their classes so much, it will be nice to put their tutu's on again, & maybe i can take Tottie's off long enough this weekend to wash it! (OYE! EVERY DAY, no joke!).

Wednesday, January 2, 2008

Moving forward with the eyes


Charlotte's eye appt today showed that she has responded well to the eye drops with the right eye, but the left eye is showing no improvement. There are still too many white blood cells in the left eye. We cant get it under control.

She said there is nothing more potent (topically) that we can do, she agrees with Dr. Kingsbury that we start Methotrexate for Charlotte. That will be a weekly shot given to Charlotte by us and in the long run will help treat the eyes & the joints (if any more pop up or to help keep away the ones we have).
We keep doing the drops hourly (every 2 for the right eye), we wont see effects of Methotrexate for at least 6 months, we continue to see the Opthamologist every 2 weeks & will follow up with Dr. Kingsbury tomorrow on getting going w/ the new treatment.
Despite my little teeny voices of pessimism & fright of a "steroid" in my babies body, I am optimistic this is the right course of action. i think the first few shots are going to be a little difficult on our end to dispense, but maybe by the way we do it, we are cultivating future nurses or dr's in our house, so we will make sure we treat the situation withgrace & assurance. We explained to Emma & Ellie tonight about these next steps. I even had a little talk with Charlotte about it as I snuggled with her tonight. You know, because having deep conversations with a 2 year old sort of relieves the stress & tension of it all! I don't think I am going to make a "Methotrexate in '08" bumper sticker, but I still remain optimistic & am so appreciative of the support around us! Thanks for keeping Charlotte in your prayers! She's a trooper, this little gal!!