REECE99

Not two...

noreply@blogger.com (Erika) — Thu, 26 Jan 2012 23:20:00 +0000

My daughter Ellie on the monkey bars with
Addison, Ainsley & their older brother Connor.

One of my besties became my bestie because her daughter was diagnosed with Juvenile Arthritis within a month of Charlotte. Charlotte became besties with her daughter Addison & their bond would be forever. Addison's family would become family because that's what happens with the community of arthritis parents. I care for Addison like she's Charlotte's sister & I know what her mom is feeling through the ups & downs of bad lab work numbers, swelling in the knee, painful absences from school, like no one else would.

But what I can't relate to is todays news that my bestie, Laura & her husband Jim received today about their third child, Ainsley who is now diagnosed with psoriatic arthritis. I sigh on the phone when she rings with the news. I can't imagine having two with the disease and having a different type of the disease to boot. Especially when Addison isn't in remission & continues to battle her arthritis (getting on Enbrel soon to her mix of Methotrexate).

I know that Laura & Jim are different parents with Ainsley's diagnosis than they were with Addison's. They can face this news with more courage & knowledge & aggressiveness than they did years prior being in a daze with Addison's diagnosis as a toddler when every piece of language is new & you have to look EVERYTHING up. The scariness factor is gone, but I am sure its quickly replaced with anger & bitterness of "really!? why?!"

Laura & Jim... BLECH. I love you & I love Ainsley so much & hate this for her. But her journey will be different as this disease is with every child. And I know you will tackle her diagnosis with strength, determination, mindfulness & she will not suffer because of it. Lots of love & support from here to there.

keeping active

noreply@blogger.com (Erika) — Thu, 12 Jan 2012 06:46:00 +0000

2012 on Mt. Hood

The hubby is a snow skier & has made skiers out of the 10 & 9 year old too. So when Charlotte BEGGED to go up to the mountain with them last year, I thought, "well she is either going to love it or hate it." And if I were a betting woman, I would have laid down the Benjamin's on HATING IT.

Why? Because she has arthritis! And its cold! And hard work! And... well she has a little body that has arthritis!!

And I would have lost that money.

Because this girl LOVES downhill skiing! Begs to go up, is giddy to head to the mountain & is excited for her lessons. She's now going up on the chair lift & learning to control her swooshing down the mountain.

Amazing. The fact that she loves downhill SNOW skiing, it just amazes me. Each & every time I watch her. Total trooper, total fanatic, and I totally forget that she has arthritis. Until the next day when she aches a little. But then every skier in our house is hurting a little the next day :) :) So we celebrate normal body aches in Charlotte after a long day of skiing!

Soaking in Salt Water

noreply@blogger.com (Erika) — Sun, 08 Jan 2012 06:21:00 +0000

In the health & wellness section of my local grocery store, they had bulk of salts. The manager said he indulges in an entire tub (see picture) PER bath. Its sooo soothing he said. I had heard about salt bath benefits before from our local farmer Gary (best blueberries ever!) who said he turned his swimming pool into a saltwater pool for the family! More on that another time (because that's what I would like to have here at our house!).

Back to the salts at the grocery store near the shampoo & lotion. So he had me at baths & I bought a cottage cheese size tub of salts & added it to Charlotte's bath tonight & will look into buying a bigger size so we can all take salt baths. Big sister Ellie who struggles with eczema in the winter got in with her & then they both rinsed off in the shower after. They really enjoyed it!

The benefits!!

Salt water baths can stimulate circulation, hydrates the skin, increases moisture retention, promotes cellular regeneration, detoxifies the skin, and helps heal dry, scaling, irritated skin. Salt water bathing reduces inflammation of the muscles and joints, relaxes muscles and relieves pain and soreness

Iodine regulates the acid-alkaline balance in the blood and tissues, helps to repair and regenerate worn out tissues and nourishes the skeletal structure. It enters into the thyroid gland's secretion. The hormone uses the iodine to cleanse the internal toxins & restore internal balance.

There's more & more & more benefits, read them here:
http://www.naturalingredient.org/Articles/salt.htm
http://www.jointhealthmagazine.com/arthritis-knee-pain-relief-epsom-salt-baths.html
http://www.saltworks.us/salt_info/epsom-uses-benefits.asp

Resolutions

noreply@blogger.com (Erika) — Thu, 05 Jan 2012 05:36:00 +0000

2012 will be the 5th year of Charlotte battling arthritis. Diagnosed in the fall just after her 2nd birthday, we have learned many things in these 5 years & have much more to learn because Arthritis doesn't follow a simple road or the same road for every child. Arthritis likes to veer off once in awhile, thinking its in control throwing us all off course & causing us to huddle, confer & ask "What would you do? What should we do? What CAN we do?"

But in this 5th year, here's how we are going to help Charlotte control her arthritis:

1. Swim. As often as she can. At the pool & taking more baths. Whenever she wants to be in the water, we will oblige because we know it makes her feel good. (does she seem grouchy? start a bath!)
2. Practice GF! We can always do better on keeping the gluten out of her diet which means me being more diligent about menu planning & creating yummy gf treats & snacks.
3. Joint health thru supplements. Taking her fish oil supplements 2x a day would be a beneficial habit.
4. Eat anti-inflammatory foods. Again that comes back to the Momma with the menu planning, stop yelling at me already!

Resolutions in the New Year, always learning... May you &your family have a VERY healthy 2012!

I love Pinterest!

noreply@blogger.com (Erika) — Mon, 26 Dec 2011 03:33:00 +0000

I think this is such a cute picture for a Christmas photo shoot! But it wasn't on Pendleton's site, it was only through their email, so I needed to put it here to pin it on Pinterest!

Merry Christmas

noreply@blogger.com (Erika) — Mon, 26 Dec 2011 03:10:00 +0000

Merry Christmas!

The Wonder

The girls are playing with new toys (painting, building, pretending) & I am pretending Christmas cookies are a full meal (must clean the sprinkles off of the keyboard)!

Charlotte's eye appt before Christmas showed one cell in her left eye but we aren't going to get in a fuss about it. Her labs showed everything is good with her liver (levels were elevated 6 weeks ago and so we were watching.... labs are taken every 6 weeks with Remicade).

6 year wellness visit showed Charlotte falling a bit off the growth curve (a little too tall for her weight). I have noticed that she's a pretty lean girl, there's no buffer between those ribs & her back or front. She's a healthy eater with a good appetite so the Dr. isn't too worried but would like to see her again in a year. I question if the blame can be pointed to arthritis? Drugs for arthritis? Or just who Charlotte is?

Our Christmas eve activity is to decorate cookies for Santa... and we let Charlotte have a few extra!

Jingle Bell Run 2011

noreply@blogger.com (Erika) — Wed, 07 Dec 2011 07:36:00 +0000

Over four thousand runners & walkers participated in the 2011 Portland Jingle Bell Run, fundraising over $142K for research & programs through the Arthritis Foundation. Amazing! It was a balmy 32 degrees :) but it wasnt raining so YAY!!!

We had another great turn out for Tottie's Team!! Thank you Lori, Courtney, Melanie, Patti, Linda, Brad, Jill, Merissa, Emalee, Tate, Carson, Emme, Britany, Janet & my parents!

And my cousin ran in Franklin, TN! Her first 5k, I am so proud of her!!!

Ellie & Emma getting ready to run with Emme & Carson

Getting some pre run candy canes from Santa

Friends Tate & Emme at their 1st JBR!

Charlotte just had her check up with her rheumatologist. She sees him every 6 months because its the eye dr. that Charlotte sees on a regular basis. Charlotte's joints are quiet, so she sees the rheumatologist as a check in, a talk & a body check. He said she's super bendy which is great but will invite the likelihood of sprains etc from activity. Well... cross that bridge. He didnt like the levels of her liver from her last labs (gets labs done every 6 weeks with her Remicade) so we will watch that with her next infusion (Dec. 23rd).

Emma sang with Carson & Emme after the run.

Thankful

noreply@blogger.com (Erika) — Tue, 22 Nov 2011 04:58:00 +0000

Charlotte has been so busy leading kindergartners that I have been remiss in her updates. And as one would assume, no news is good news.

Charlotte has finally stretched remicade to 6 weeks (2nd time/4times will be before Christmas). It took a long time just to get to 6 weeks after her hiccup this spring.

But all is going well now. And here's a day of remicade through Charlotte's eyes. She has to hang out for 4 hours, so I gave her sisters iTouch while she's sitting with her nurse at the kitchen table. See her remicade behind her on the big IV stand. I give her tea to drink, fluids, for her urine test that the nurse takes with her.

She has the sniffles before Thanksgiving, but is in great spirits. First cold in late November is pretty good for the weakened immune system Kinder at public school!!

Thankful!!

Clear Eyes & A Warning

noreply@blogger.com (Erika) — Thu, 08 Sep 2011 23:05:00 +0000

A terrific 1st week of school for the kinder & clear eyes again! WHOO HOO! She sees the eye dr. again on November 2nd before Remicade (November 9th).

A warning was issued today for Charlotte who is on Remicade - a TNF blocker (protein killer that talks to the white blood cells). Just a reminder to us parents to never look at any sniffles or sneezes lightly. They can't "toughen up cupcake" like normal children.

FDA Strengthens Anti-TNF Warnings

Two types of bacteria pose infection risks for those taking the biologics.

By Andrea Kane

9/8/11 The U.S. Food and Drug Administration, or FDA, is warning that people who take tumor necrosis factor-alpha blockers, also known as anti-TNFs or TNF-blockers, may be at risk of infection from the bacteria Legionella and Listeria.

After reviewing cases of infection in patients treated with the drugs, the FDA is strengthening the drugs’ boxed warning labels to include the two bacteria.

Anti-TNFs, a type of biologic product, are used to treat rheumatoid arthritis, or RA, ankylosing spondylitis, psoriatic arthritis, juvenile arthritis and several other conditions. The new warnings will be added to labels for infliximab (Remicade), etanercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia), and golimumab (Simponi).

Serious infections – from bacteria, fungi, viruses, mycobacteria (including tuberculosis) and other opportunistic pathogens – are a known risk of anti-TNFs, which can compromise the immune system’s ability to fight infections. Patients older than 65 and those taking other immunosuppressive drugs may be at greater risk of infection.

The added warning may help patients with these infections get treatment more quickly, according to the FDA. In the past, healthcare professionals weren’t always aware of the risk of certain infections, leading to delayed treatment.

“Any product we use to treat rheumatoid arthritis, because it affects the immune system, always has the potential for infection,” says David Pisetsky, MD, PhD, chief of the division of rheumatology, allergy and clinical immunology at Duke University Medical Center. “The difference is there are now two other organisms that we have to be concerned about. So, if a patient gets sick, you add into your thinking, ‘Could it be Legionella or Listeria?’”

Jeffrey Curtis, MD, director of the Arthritis Clinical Intervention Program at the University of Alabama at Birmingham, agrees. “All the FDA has done is called out two specific infections among all the other ones that physicians have been thinking about,” he says.

“The take-home message for patients is that they should not have new concerns or worries about the safety of these medications,” says Dr. Curtis, who is also an associate professor of medicine at UAB and a former Arthritis Foundation-funded researcher.

FDA records show that, between 1999 – the year after the FDA approved the first anti-TNF – and 2010, 80 patients taking anti-TNFs developed Legionella pneumonia, also known as Legionnaire’s disease, and 14 patients died. (Many were also taking methotrexate and/or corticosteroids, which also suppress the immune system.).

Twenty-six cases and seven deaths from Listeria infections – including meningitis, bacteremia, endophthalmitis and sepsis – were identified in patients taking anti-TNFs (in many cases with other immunosuppressive drugs). The FDA identified other fatal Listeria infections in phase II and phase III clinical trials as well as post-marketing surveillance.

In addition to adding the risk for Legionella and Listeria, the FDA is revising the boxed warning and “warnings and precautions” sections of all anti-TNF labels so that they contain consistent information about the risk for serious infections and the associated disease-causing pathogens.

The addition of Legionella and Listeria to the boxed warning won’t change the equation, say Drs. Curtis and Pisetsky.

“I don’t think that there is much data that meaningfully changes the risk-benefit profile of these medications,” says Dr. Curtis.

“For patients, it’s always a trade-off, because every therapy has its risks and benefits, and we have always been concerned about infection anyway,” says Dr. Pisetsky.

He adds that one way patients can protect themselves against infections is to be proactive and discuss it with their doctor. “Always decide, do you need a product or not? How well is it working? Is there another [drug] regimen you can take?” he advises.

“The tendency, for good reason, is once a patient is on a TNF-blocker, they stay on it, but one thing we are learning is that there are some patients who can be withdrawn safely,” he says. “Another tendency is to give TNF-blockers with other immunosuppressive drugs, so you have patients taking multiple products that are immunosuppressive. Do they need all of these?”

Patients taking anti-TNFs should pay attention to the risk. “Contact your physician if you have a fever and chills or a change in your condition,” Dr. Pisetsky says. “Always question if this is the flu or some kind of infection.”

Patients taking anti-TNFs should tell their doctor or healthcare professional if they are being treated for an infection or have infections that keep coming back, advises the FDA. They should read the medication guide and report serious side effects from anti-TNFs to the FDA’s MedWatch program.

1st day of school

noreply@blogger.com (Erika) — Tue, 06 Sep 2011 04:15:00 +0000

The bus is going to be stopping at our street tomorrow morning with eager sweeties ready to start a new year, in some WARM weather! My baby is getting on the bus with her big sisters tomorrow & to say I am excited & nervous would be totally accurate.

Little fish in a big pond after being in such a loving, family oriented preschool.

Watching her get on that bus tomorrow... might be hard on the momma but my little tough girl can tackle the world & she's ready!

Here's to a HEALTHY school year!!

All Clear!

noreply@blogger.com (Erika) — Thu, 25 Aug 2011 05:42:00 +0000

We havent heard those words since January 11! And here it is 8 months later. Who knows what caused the blip in the plan, what had those 5-6 cells hanging out for months, causing Charlotte to be on steroid eye drops every few hours, reminding her that its still there.
But we added many an eye apppointment to the summer schedule and when they finally cleared last week, the eye dr gave us reprieve & said we didnt have to see her for 4 weeks! HIP HIP!
Carpe Diem the last week of summer!! And i just wrapped up my 4 page document on Charlotte that will go to the Principal, counselor, teacher, & PE teacher/music, etc.

Hanging out... but its ok.

noreply@blogger.com (Erika) — Thu, 21 Jul 2011 05:16:00 +0000

Charlotte has been taking topical steroid eye drops since February. Its now July. That's a long time. Lotsa drops.

As of today's eye appt, she's off of the drops. However, today's eye appt showed 1-2 cells in each eye hanging out.

But that's ok.

She could live a lifetime with 1-2 cells just hanging out. Eye dr's dont fret over 1-2 cells. So moving forward with the plan...

She has two more sessions of Remicade at 4 weeks till she moves on to 6 weeks. If these few cells can just hang out & not invite friends & she can move forward with stretching out the remicade, it will be a win.

One day at a time. She's off the drops! Yay :)

And we reminisced with the ophthalmologist who started looking back at Charlotte's chart, "Wow Charlotte, you are going into kindergarten? I have been seeing you for a long time! Since you were two! We have a long history together!" I agreed & said, "Yep, are you ready to come to her graduation, then wedding, then baby shower?!?!" :) She's so great, she said, "oh gladly!!" Family. Dr's become family!

And then there was 1 drop....

noreply@blogger.com (Erika) — Thu, 14 Jul 2011 21:33:00 +0000

Charlotte has been decreasing her steroid eye drops since the cells are gone & tightening the regime of Remicade medicine has kicked the uveitis cells to the curb!

Now this week she is down to one drop a day. And we start the optimism of looking ahead since her eyes are cell free again (cells popped up when we stretched her Remicade to 10 weeks). She is currently doing 6 sessions of Remicade every 4 weeks to get those eyes back on track (that's once a month for 1/2 a year!) & now she will start to stretch again, 6 weeks, 8 weeks, 10, 12...

Remicade @ 4weeks:
8.5.11
9.1.11 (she turns 6 on the 24th!)
9.30.11 (she's a kindergartner!!)

Remicade @ 6 weeks:
11.9.11
12.23.11 (Merry Christmas!)
2.3.12
3.16.12

Remicade @ 8 weeks:
5.11.12
7.6.12
8.31.12 (entering 1st grade!!)
10.26.12

Remicade @ 10 weeks:
1.4.13
3.15.13
5.24.13
8.2.13 (entering 2nd grade!!)

4 times at 12 weeks if all is going smooth by this point & then we are done (I haven't mapped that out yet, & probably wont for a few years ;)).
Keeping the Remicade at 200mg's & the Methotrexate at .6 mls each week (shot). Nothing goes very fast :) and we take it one day at a time! Last week we were able to head to the beach, the sun was out but its the Oregon Coast so its brrrrr cold! Writing her name in the sand is her favorite thing!

Bad Mom Award

noreply@blogger.com (Erika) — Sat, 02 Jul 2011 17:52:00 +0000

Who knew that a 3 mile scooter ride would be a bad idea? eek.

Too much pressure on one leg. She should have rollerbladed.

It would have equaled out the pressure on both legs.

But she scootered the entire three miles & today she woke up limping.
We are making her take it easy but, guilt, guilt, guilt. I feel awful.
It was a fun time, she enjoyed it. I ran with my friend Laura and her two kids & my girls scootered. We stopped at the 1/2 to get a drink at Starbucks & then turned around & went back. But it was just too much on her little legs.

Then we went swimming & then rock climbing.
It was a sports filled day. Maybe too much. Learning lessons. Feeling bad :(

Update - all is good... starting to get back to our normal

noreply@blogger.com (Erika) — Fri, 01 Jul 2011 05:24:00 +0000

Eyes: No cells as of the last 4 weeks so she is tapering off of the drops. shortening the timframe between remicade infusions did the trick. YAY. we are back to every four weeks (boo!) but... there is light at the end of the tunnel if the eyes stay controlled & she starts back on the road again (wrapping up in 3rd grade is that celebration....but hope to get through kindergarten next year! one day at a time with JRA.).

Throwing up: She started Folic Acid & takes it every day & hasnt thrown up since! She is also on a natural anti-nausea medicine (I have linked it to my Pinterest site - check that out here: http://pinterest.com/erikaharriscox/

We are now in summer (we think...because in the Pacific Northwest we dont see the sun till after July 4th!) & she's swimming almost every day (which feels SOOO good!). We have many friends headed to the National Arthritis Convention in DC and are excited for them. We will be there in spirit & hope to start going next year to meet friends! Love our support network across the nation, its been sooo helpful to toss things to them & see what thoughts are!

15 Things Not to Say to Someone With RA - rheumatoidarthritis - Health.com

noreply@blogger.com (Erika) — Fri, 01 Jul 2011 05:23:00 +0000

15 Things Not to Say to Someone With RA - rheumatoidarthritis - Health.com

Throwing up is now a habit

noreply@blogger.com (Erika) — Mon, 30 May 2011 18:21:00 +0000

Charlotte will start taking folic acid every day (prescription strength) + an anti-nausea medicine to see if that helps with taking Methotrexate (her weekly shot for arthritis).

Seems to have become a habit, throwing up in the middle of the night on shot night. She constantly says her tummy hurts, its always been that way so hard to know on what level the tummy is rumbling. But lately, she's throwing up on shot night & so her dr. is putting her on 2 new supplements to help.

Tossed this out on facebook - I am in a group with Arthritis moms across the country. Here's the responses I got back:
My note: Charlotte has been consistently throwing up on MTX night. She doesn't take folic acid but I am asking the Dr. if that will help. Anyone else experience throwing up after giving Methotrexate? (She's been taking it for 3 years now, but its been this last month that the throwing up has been happening). Thanks for the comments!

*We have always given Elsa folic acid, but she's never had experience of thowing up. Ask as soon as you can.

*Dakota started throwing up after mtx so we give her zofran before her shot and for a couple days following. That helped a lot

*OMG Erika! Charlotte is going through exactly what Kylie is going through!! Dr. E. upped her dosage from .8 to 1.0 and she reacted horribly. (Vomiting and nausea almost immediately and consistently for up to 3 days!!) We added Zofran the the second week after the upped dosage but didn't do it for long enough and she vomited the 3rd morning after injection night and missed school again. Finally, this week Dr. E. said to do the Zofran every 8 hrs. for the 3 days and that worked beautifully. She finally was vomit free this weekend!! I hope Erika can get teh same relief!!

*Wow. The EXACT same thing has been happening to Claire for the last month. She takes Folic Acid 3 times a week. Yes, she did have a stomach virus but that's over with. Still, every Friday 9mtx night) she's up at night several times saying she's going to throw up, and sometimes does. I was going to call her doctor today.

* We did the folic acid and have for a long time no relief for mtx. Now we have a GI specialist and she is diagnosed acid reflux and takes nexium

* The folic acid does not help Kylie with the vomiting and nausea. Finally adding ZOfran has helped wonders. I hope the doctor helps Claire, too!

*I hate to sound like a stuck record but 12% of the population MTX does not work and in a lot of people how it manifest itself is through throwing up. We had no idea Liam was in this class. We gave him shots for almost 6 years and it was not until the last 2 years that he thew up.

*Do you mean the throwing up is an indication that the MTX is no longer working? I'm curious since Ky just started throwing up from MTX with dose increase. But the increase has seemed to help her (knock on wood) because yesterday we went to a fair and she was able to stand for 3 hours and wait in a few lines for rides. She has not been able to do anything like that in a year and a half. It was the first time we did something like that and left the wheelchair in the trunk of my car.

*It can be but throwing up can just be a side effect. The only way to tell is to get the blood test done.
http://www.avisetest.com/Patients/Services/AvisePG.html it is exepensive it was just under $400 for it but our insurance paid 100%.

* we were given Folic Acid from the beginning & have given it to her dissolved in her drink 1 time every night/day. we dont skip any days,. she gets it Every day & has for the 4 plus yrs for side effects/symptoms as well as depletion,.... we only had the 1 incident of vomitting/fevers,.... for a few weeks & then switched to pills for a couple months,... but when eyes flarred again,... had to go back to the shots & fine ever since...... although I count my blessings because I know things happen with these kids so differently & randomly. I just hate that they need any of this!!! I spoke with another mom whose child switched to gluten free & some other diet changes & has been free for 5 years now..... may check more into this again.

the blood test shows how well your body metabolizes mtx. Our children's hospital does not do the test because there theory is they knew what the top dose a child could have on MTX without ever thinking of what if it was not working. It still irritates me that thinking. Liam would throw up within 30 seconds of getting the shot and the drs kept on telling me it was nerves. Well when I did MTX and I got sick immediatly, I was really? After it came back that I was not metabolizing mtx and there is a strong genetic link our peds did the test. The one dr. at children's said he had to be on mtx to protect him with the remicade. She was not getting that Liam received no benefit at all from mtx. He is now on arava to protect for the remicade.

* Just an fyi... I was never advised about mtx toxicity until dakota was rushed to the er earlier this year and a dr brought it up. Google it and learn about it. I have since talked to a dozen moms who have children who developed mtx toxicity after being on it for years.

PS Before & after pictures, Charlotte lost her 1st tooth! Monumental in our eyes because it wasnt a tooth that is being pushed out by another tooth as it normally goes. This was the tooth she bucked out at age two routinely climbing into a chair. 1st sign of Arthritis - knee locked up on her. Bye tooth :( It lasted for 3 years! Pretty good!! :) Empty spot much more acceptable at age 5 than at age 2!

Arthritis Walk

noreply@blogger.com (Erika) — Mon, 16 May 2011 04:17:00 +0000

Pouring rain. Just slightly warmer than the Jingle Bell Run. But very fun to see a sign with your face on it & walk the entire 5k without complaints. It was a first: 1st time Charlotte walked 3 miles (shocked really!!!) & 1st arthritis walk in Vancouver WA (this was along the Columbia river & usually its along the Willamette river in Portland, OR). We had Ellie's BFF join us (that's Sophia behind Ellie) & Charlotte's preschool friend, Lily, walk with us on this very, very, VERY wet & cold day. The sign is inaccurate & I snorted when I read, "4 years" & asked, "anyone have a sharpie??? Add some plusses to that 4 years!" Which led to great conversation & education about Charlotte's setback during weaning & how she's back on every 4 weeks with the remicade, and currently on eye drops. Next eye appt is this week...

Remicade Infusion Days

noreply@blogger.com (Erika) — Tue, 03 May 2011 04:21:00 +0000

Jordan is from LA & has JRA & uveitis like Charlotte. Jordan also was diagnosed at age 3 & is now 9 years old. She does Remicade infusions JUST like Charlotte (she is every 6 weeks, while we are back to the beginning of doing it every 4 weeks). Jordan's mom took a video of what Remicade infusion days are like. And Jordan is a CHAMP!!! So brave! I used to have to put Charlotte in a straight jacket, she's much better now, but no where near the grace & bravery of Jordan!! Hopefully watching this will help Charlotte understand other little girls go through this as well, with out the screaming & crying & resisting :) Jordan is awesome, I think you will like seeing this video, its inspired me to try & take some pictures/video of what its like for Tot.... and this will give you a good idea of what infusion days are like.

Ballet All School Program

noreply@blogger.com (Erika) — Sun, 01 May 2011 19:46:00 +0000

The ballet bun is OUT!

After going to ballet every Saturday since January... The All School Program (ASP) for School of Oregon Ballet Theatre ended this weekend after two performances. Emma was chosen to be in both performances, so we were able to watch both & loved being able to see her twice. Which might have been a total of 2 minutes :) Hip Hip Hooray for level one!

But to see the other girls & boys was amazing. This year they have graduating seniors headed to Joffrey, 2 apprentices for Oregon Ballet Theatre, University of North Carolina School of the Arts & The College of Fine Arts at the University of Arizona. All amazing places & amazing ballerinas!

Emma will be attending the SOBT summer intensive (3 days a week in July) & has moved up to level 2. A passion since she was 3, its been so amazing to watch her grow this year!

Avnet LPGA Classic / News

noreply@blogger.com (Erika) — Fri, 29 Apr 2011 05:57:00 +0000

Avnet LPGA Classic / News

What a hero Kristy McPherson is to my daughter, and to me. She is HOPE!!! Can't wait to meet her someday!!

Drugs are smarter!

noreply@blogger.com (Erika) — Fri, 29 Apr 2011 03:40:00 +0000

According to our Pediatric Rheumatologist:

The test results show that there is no evidence of HACAs and Charlotte had a generous infliximab (Remicade) titer (concentration) when measured, back on 4/26/11 (so that means its in her system? but just wasnt strong enough?). While we were getting blood work, we had her HLA-B27 tested & it was negative.

Currently we are scheduled for Remicade on May 13th (4 weeks). Pediatric Rheumatologist suggests doing 4 weeks for several infusions to see if that gets her back on track (before increasing the dosage). Asking Dr. Foster, the uevitus specialist we see in Cambridge & will see his thoughts.

We also have increased the methotrexate from .4mls to .6mls.

She is currently on Pred Forte drops every two hours with the ointment at night. Would like to wean this, but eye appt is next Wed, May 4th. DISLIKE THE DROPS.

Its good news.... Blech. But it is. I mean I dont want her creating antibodies towards remicade, that wouldnt be good if her body started getting too smart for us. But... I just dont LIKE the remicade process. Blech... get over it Erika :) So this is all good & so now if we go back to every 4 weeks (we did a year at every 4 weeks, back in 2008) & can get it back in control, that would be good.

Haven't heard yet...

noreply@blogger.com (Erika) — Thu, 28 Apr 2011 17:04:00 +0000

Still waiting for test results to come back on Charlotte to find out if she is making antibodies against the arthritis medicine (remicade) & while we wait, we have some big events going on:

Blazers need to win tonight!
(phombo.com)

Wedding tomorrow. Watching the tape delay with my girlfriends over coffee & scones & a wee bit o'cake after we put the cherubs on the bus.

Emma's ballet performance! A full week of rehearsals on the big stage. She's so excited!
(artscatter.com)

Something is up....

noreply@blogger.com (Erika) — Sun, 24 Apr 2011 00:34:00 +0000

This week Charlotte had her eye appt & there were 6+ cells in the left eye. She had just had her remicade treatment & methotrexate 5 days prior & is still taking a topical steroid eye drop, so there shouldn't be ANY cells there.

SO! What does that mean? Not sure. But the plan is:
IS SHE REJECTING THE MEDICINE?
Charlotte had labs done 2 days after her e
ye appt to see if she is creating anti-bodies against the remicade. At any time the body can realize that this medicine is an intruder. In Erika's rudimentary & very visual picture of things: Remicade is a protein cell that communicates to the white blood cells "DIE". Because her own protein cells are not getting that job done (they are having a coffee break, downing a few donuts. They are fired, we hired the REMICADE to step in & take over!).

AND IF SHE IS....???

And if she is rejecting the Remicade then we hop to another "biological" (TNF Inhibitor), aka protein communicator. The other meds in this camp are ones you might have heard of (thanks Phil Mickelson):
a) Enbrel (an at home shot)

b) Humira (an at home shot)

Remicade worked... until it didn't. And I have always had a love/hate thing about it.

Love that it works (or did), didn't like the process of a 1/2 day, being chemo, having a nurse or having to go to the hospital. Its the relying on a whole 'nother team to get it done. Blech. But you grin & bear it cuz it works. And it was. Working.

GO BACK TO 4 WEEKS

Remember that plan we had of weaning off of remicade, going every 6 weeks, then every 8 weeks? Then this stumble started on that 10th week and we are having to put it into reverse. So we are back to 4 weeks (May 13th). However if we find out she's creating anti-bodies, I assume we would halt the remicade & start something else ASAP. That's me guessing, we will find out next week.

1 cm

noreply@blogger.com (Erika) — Tue, 12 Apr 2011 02:56:00 +0000

1 cm of difference in length between Charlotte's left leg to right leg.

Watching a physical therapist at work is fascinating! What an educational experience to watch her work: Having Charlotte play games but it was all intentional, looking for things that are wrong. There is no active inflammation so this 1cm should be the extent of it, and hopefully over time the other leg will catch up. I didnt tell the therapist about arthritis going to Charlotte's ankle & a wrist and she was amazed at her ankle flexibility. Saying that to continue having flexible ankles, one must have strong legs, so we need to encourage some tip toe walking, jump roping & running! (sounds like some cross fit fun!)

And it was good to know that the 1 cm in difference only has affected one area: the right hip flexor (the right leg is the longer leg) is very tight. Very, very tight.

And Charlotte has been favoring it. She has never sat criss-cross applesauce at school (its too painful on that hip). Who knew, I thought the knee had the damage & that's why, but its the hip that's too tight, it can't stretch down in that position. Talking with her swim teacher, she said her kicks aren't normal, and its probably because of the tightness in the hip for that range of motion.

And now... we sprint into action:

a) We put a lift in her shoe today. And will transfer it from shoe to shoe.

b) Also, we are going to do some stretching exercises for that right hip. Sisters joined in the floor fun tonight!

c) We are to try & redirect her side sitting into 1) Modified cross leg (cross ankles & have legs almost straight), 2) modified straight leg & 3) use small pillow under her bum to make it more comfortable.

d) She will keep up the swimming. And I would actually like to add more (maybe therapy swim).

e) I would love to find some therapy yoga for her as well.

We will revisit therapy at the end of the summer, see how Charlotte is doing with her hip after swimming all summer!