Sunday, March 30, 2008

Penguins

Emma has been learning about penguins, and so we attended a "show" that highlighted her love of dance that incorporated penguin knowledge :) She even taught sister!

Thursday, March 27, 2008

Next Stop, Remicade

I need a painting in my house of a racetrack, an oval one. With 5 horses going around the track. This is life! At some point, each of the horses goes into the middle to do their job. One horse keeps running & has to remember to pick up/drop off in the middle & remember which horse goes where.

Can you visualize it? Wouldnt that be a great piece of art? Or would it stress me out to remind me that we just keep running? Or would it be inspiring to know that the more we keep running (literally & figuratively) we grow, we learn, we get stronger... Speaking of running, i need to get on the treadmill after all this scheduling:

Next steps with Miss Tot:
We meet with our Pediatric Rheumatologist on Tuesday (APRIL FOOLS - no not really, but what a wierd day to meet with him when I should be working on my big jokes w/ the girls)!

We are starting the process for Remicade. BEFORE we do that (here comes the horse race):

1. Tomorrow go into pediatrician to do a TB skin test. Need to make sure that she doesnt have a trace of it, didnt have it because going on this major drug can reactivate it & the TB then can run rampid & cause big problems.

2. Monday, go back to ped & get results.

3. Tuesday, take results to ped. rheum.

4. Start the process for Remicade. Its a battle you have to fight with insurance first.

Once the ok is given for Remicade by insurance, Charlotte gets 3 infusions in 6 weeks (at hospital - wow that's heavy hitting).

Then: once a month infusions & this gets adjusted over time.

Asked our ped. ophthalmologist again yesterday about any other cases we could gleen from - she said again, we are her toughest patient. Ryan & I havent decided if we are going to Boston yet to see the eye dr., we are going to discuss with our ped. rheum on Tuesday.

Understanding REMICADE
REMICADE is an advanced treatment that has been shown to have substantial benefits in patients with a number of inflammatory disorders involving the immune system. REMICADE targets specific proteins in the body's immune system to help control the development of inflammation, significantly reducing painful symptoms in diseases such as rheumatoid arthritis.


How its given
REMICADE is given by IV infusion, a simple (ha!) process that usually takes about two hours. A healthcare professional administers the treatment in a supervised environment (Emanuel Childrens hospital). You will receive your first dose followed by additional doses at two and six weeks after the first dose. You will then receive a dose every eight weeks. If you have ankylosing spondylitis, you will receive treatment every six weeks.

Life doesnt stop!

I will admit how I handled yesterday's news. Only to relieve the guilt :) Emma wasnt feeling so well on Easter, so she passed up her Moonstruck Chocolate solid bunny. Its been sitting on the counter all week & she hasnt mentioned it, I think (hope) she has forgotten about it....

Cuz momma needed some chocolate yesterday. Thank goodness he was only about 2.5 inches high cuz I couldnt stop at just biting off the years, then came the head & whoosh it was gone...

And my body did pay for it this morning. My body does NOT like anything past 7/8pm, it doesnt like things i am shouldnt have... it tells me! And it told me today.

My plan: Take Emma to moonstruck for a 1:1 date. She gets what she wants :)


So life keeps going & for Emma & Ellie - wow how they have grown this year:


Ellie 43 1/4"
(growth of 3" from 4-5 years old) 65%
43 lbs (+ 4lbs) 70%

Emma 46 1/2"
(growth of 2" from 6-7 years old) 30%
52 lbs (+ 5lbs) 60%

Wednesday, March 26, 2008


Charlotte just returned from her eye appointment. A brief background history of our meds & where we were to today is that in January we pulsed Methylpred in charlotte over 3 days at the hospital & it controlled the uveitis. So since January, we have been lowering the oral steroids & the topical steroids (eye drops).


Today's appt confirmed that the uveitis is back & with a vengeance. 2+ in both eyes.
We are back to every hour on drops & our ophthalmologis is calling our pediatric rheumatoligist & we will talk game plan tomorrow.

So... Methylpred in January did it... for awhile, but under ophthamologist standards, it hasn’t been CONTROLLED (guessing because we haven’t been OFF steroids).

So that didn’t work.

The plan, the original plan was to go to remicade if the methylpred didn’t work. And we were going to go to boston to see
Dr. Foster @ the Uveitis Foundation.

So we are going to keep tossing that idea around. We might have an insurance battle to get on the remicade (its a biological drug that is very expensive) & if so, maybe Dr. Foster's assistance can help our pediatric rheumatologist with this crusade.

Its interesting without me knowing it, but now realizing, how I was starting to pick up other projects here & there because I was feeling confident in the direction of life. Time to slow down again & take care of business. Another opportunity to learn & to fight & to continue sharing Charlotte's story so that legislation can be passed & federal funding can help to find a cure for this awful beast.

But first...dinner :)

The Princess Sleeps Here!






Even a princess needs her beauty sleep! Charlotte goes in for her bi-monthly eye check today. We continue to expect positive control of the uveitis & expect to lower the steroid amounts more (and the cheeks will start to slim!).

Wednesday, March 12, 2008

Eyes Rock & Roll

Great Day for Charlotte's Baby Blues!
Her arthritis in her eyes - anterior uveitis (iritis)- is still under control (after 6 weeks) so we are continuing to taper 2 of the 3 meds she takes (the 2 steroids).

Here's the official recap for the dr :
We are in week 6 of controlled uveitis since the IV pulse of methylpred. And Charlotte’s appointment today with Dr. Goodman went great as she continues to have the uveitis under control w/ ZERO cells. Our next appt is Wednesday, March 26th & our homework is to work on our recognition of eyesight shapes covering each of her eyes so Dr. Goodman can get an accurate assessment of her vision.

As for meds:
Topical Pred Forte
  • Dr. Goodman’s plan is the same as yours: tapering very conservatively.
  • We are tapering from every 3 hrs to every 4 hrs – making sure we get in 4x a day. Times being: 730/1130/330/730 & then dialate + ointment at bedtime (even if its at 730, she wants us to administer Pred Forte first).

Oral Prednisolone

  • We are on week 1 of 2 for 2.0 ML’s in the AM. Friday is our Prednisolone day – we will continue 2.0 ML’s till 3.21, where we will do 1.5 mls for 2 weeks. We are still on the plan to reduce by .5 mls every 2 weeks.

Methotrexate

  • We are currently in week 10 of methotrexate (weekly shot)

She also went potty ALL day today - i think we are OFFICIAL!!! She went at Emma's ballet today, went at home (in the downstairs big potty). She is hearing her bod!!! WHOO HOOO!
Emma was an award winner at school today & she is very proud of her gold medal for reading many minutes for 50 days. She was recognized & raised her hand when she heard her name called as she stood on the risers with her classmates. She wore her medal even AFTER school.

We have a new game at the dinner table which has been fun & less daunting than the "come up with a topic" that i rack my brain about. We start with one person & each of us has to ask them one question (even Charlotte!). The questions that Emma & Ellie have asked each other have been a little comical. And its nice that it relieves mom & dad from always asking the "so what did you do at school today...."
Tonight Ellie asked Emma "What was your favorite food in your lunch today?" Wow... i wouldnt have asked that one :) and its good to get feedback on my packing!


And on my mind... How to raise money for CARRA.... I keep thinking "How can I host a huge spagetti feed..." Yes, that's what I think about as i drive or go potty :) Then I also think, "who do i know in big businesses that would SPONSOR the race...." Any ideas????


Race for CARRA 5K Run/Walk
Participate in the Race for CARRA: Childhood Arthritis & Rheumatology Research Alliance

5k run/walk for the entire family along the Eastbank Esplanade.

The Start/Finish line is at the Main Street Plaza, where SE Main Street meets the Eastbank Esplanade just north of the Hawthorne Bridge.


100% of proceeds go directly to CARRA to help fund research.

What: Race for CARRA
When: Sunday, June 8th; registration starts at 7:30 am; race starts at 8:30 am
Where: Main Street Plaza

Contact: info@raceforcarra.com or 503.701.1400
Visit: http://www.raceforcarra.com/

Tuesday, March 11, 2008

Push the APCC act

(I edited the letter - our 2 senators have already co-sponsored the bill, so I am urging them to push it forward. representative hasNOT co-sponsored)

Reliving Charlotte's LONG journey these past 5 months in order to drum up support from our elected officials is emotionally exhausting & positively hopeful. I wrote tonight, tomorrow they will be sent. And then I want to recap the "anti-inflammatory" way of living/eating helpful information that we learned from the New Seasons Nutritionalist.

Did you know that classes are offered by nutritionalists for FREE at New Seasons because they dont believe you should be charged to talk about eating right!!! How great is that!?! Charlotte & I spent 2 hours at New Seasons today - and she went pee pee & poo poo (@ 2 separate times) at New Seasons in a BIG POTTY!!! I think we have clicked... i told her I am seeing a puppy in our near future :) The girls were very excited to hear the news! It will be good for Charlotte's body to have a puppy to chase around :)
-------------------------------------------------------------

My name is Erika & I am the mom to 2 ½ year old Charlotte who has Junior Rheumatoid Arthritis.

I urge you push the Arthritis Prevention, Control & Cure Act (S. 626/H.R. 1283) forward into action.

Charlotte is our 3rd & youngest daughter & we live in 111. She is one of 300,000 children in the U.S. that have arthritis & she’s one of 46 million Americans that are affected by a form of arthritis.

We believe that the APCC act could make a huge difference in Charlotte’s life & many children like her. There is a tremendous amount of suffering, medication & time allotted to a disease that deserves more research & eradication.

Arthritis is an autoimmune disease that has an unknown cause. Charlotte was diagnosed just 5 months ago, after her 2nd birthday with JRA. Charlotte started limping & falling easily. Our pediatrician pushed us quickly through tests to find an answer with x-rays & blood work. The results revealed normality in the x-ray but her blood work proved her ANA positive & the pediatric rheumatologist confirmed the diagnosis of Junior Rheumatoid Arthritis.

The arthritis spread fast. Within 2 months, 4 joints were affected. We treated these joints with injections & the results were very much like the tin man in The Wizard of Oz after he got doused with oil. Charlotte was able to bend & move & function like an energetic 2 year old.

In an arthritic body like Charlotte’s, the brain is telling her body that she needs more white blood cells to fight the “illness” that doesn’t exist. If left untreated in her joints, the white blood cells would accumulate & lead to immobility & possible joint damage or permanent disability. Treating joints with steroid injections is so crucial & timing is key to avoid possible permanent damage.

The eyes are considered another pocket of space for white blood cells to congregate. Charlotte couldn’t get injections in her eyes where the arthritis went immediately & so she is on a weekly shot called Methotrexate to help keep arthritis at bay in the joints AND the eyes.

She has been battling “iritis” or “anterior uveitis” since November (the white blood cells are in her iris area on the outside of the eye. Her pediatric ophthalmologist is able to actually COUNT the cells through a slit lamp).

We see our pediatric ophthalmologist weekly to every other week & when aggressive steroids (oral liquid in the morning & night as well as hourly eye drops for 2 months) weren’t making a difference, we recently spent 3 days at Portland’s Emanuel Hospital, where Charlotte was hooked up to an IV machine & was pulsed with a high dose of steroids in order to FINALLY get the uveitis under control.

Along with Charlotte's weekly shot of Methotrexate, she is still on steroids, slowly tapering to ensure the cells don’t make a comeback & we continue to see our pediatric ophthalmologist weekly.

Accessability to doctors is crucial to arthritis patients & the APCC act would support more doctors in this field where they are needed. We are lucky to have a pediatric rheumatologist who is accessible & is a teammate in every sense of the word with our pediatric ophthalmologist.
This is a battle we continue to fight, in her joints & in her eyes. It’s a battle that she will continue to fight for her entire life unless more research can be done.

On June 8th, I invite you to walk with Charlotte & our family for the 3rd annual CARRA walk/run. This is a benefit for the Childhood Arthritis & Rheumatology Research Alliance. All proceeds go directly to CARRA to help fund research to find the cause and cure of Arthritis and other Rheumatic Diseases in children.

Will you join our family? We would love to walk with you!

Please help Charlotte & the millions of Americans living with arthritis by pushing the Arthritis Prevention, Control, and Cure Act to mark up!
Thank you,
Erika

________________________________________________

Sunday, March 9, 2008

JRA Explanation

Fantastic explanation about JRA, how to treat & dealing with life living with it. From a newspaper in Schenectady, NY.

Failing to treat juvenile arthritis can lead to a lifetime of problems
http://www.dailygazette.com/news/2008/feb/26/0226_Arthritis/

Children sometimes complain about aches in their joints that could result from a variety of causes. But if a child's joints are swollen for at least six consecutive weeks, he or she may have juvenile arthritis.

"It's estimated that one in 250 kids have juvenile arthritis, which is more than the number who have juvenile diabetes," said Dr. Martin Farber, chief of rheumatology at Ellis Hospital and a member of the board of directors for the Arthritis Foundation.

Although juvenile arthritis is one of the most common chronic childhood diseases, it often goes undetected or misdiagnosed. If left untreated, irreversible joint damage may occur.

"Juvenile arthritis is a difficult disease to diagnose as many people do not think that children can get arthritis," said Dr. Patience White, chief public health officer for the Arthritis Foundation.

"Early diagnosis is essential. There are treatments available today that if started early can prevent a lifetime of disability." Juvenile arthritis is an autoimmune disease, which means that the body attacks its own healthy cells and tissues.

"The cause for most forms of inflammatory arthritis is felt to be a misfiring of the body's immune system," said Farber. "So somewhere along the line, your immune system, which is designed to recognize foreign things and then to mobilize forces to fight those foreign things, is recognizing something in the patient's body as foreign, which it is not."

Cause a mystery

No one knows exactly what causes juvenile arthritis. Researchers believe some children have genes that make them more likely to get the disease. Exposure to something in the environment - for example, a virus - triggers juvenile arthritis in the children.

Juvenile arthritis is not hereditary - so it is rare for more than one child in a family to get it.

Common symptoms include morning stiffness that improves by afternoon and joint redness and swelling. Although a young child may not complain of pain, a child may feel irritable or tired or not want to play.

Joints may become inflamed and warm to the touch. In fewer than half of cases of juvenile arthritis, internal organs may become inflamed.

Muscles and other soft tissues around the joint may weaken.In certain cases, children with juvenile arthritis show signs of a fever and light pink rash, which may disappear very quickly.

Some children have an eye-related problem called uveitis, which is treatable by an ophthalmologist.

Farber said when children are having persistent symptoms that their pediatrician is having a difficult time treating, they may need to be seen by a rheumatologist for more advanced kinds of evaluation and therapy.

"The gains we have made in therapies for adult forms of inflammatory arthritis have spilled over into our treatment of children so that their prognosis is much better today than it was 10 or 15 years ago," said Farber.

Early diagnosis and treatment can control inflammation, relieve pain, prevent joint damage and maintain a child's ability to function.

"Diagnosis is mainly clinical," said Farber. "We use the old-fashioned technique of taking a good history and physical. Lab work is supportive, but you can't make a diagnosis based on lab work alone, because there are frequent false positives."

Course of treatment

Treatment of juvenile arthritis is designed to reduce swelling, maintain movement of affected joints and relieve pain, as well as identify, treat and prevent complications.

Nonsteroidal anti-inflammatory drugs (NSAIDS) such as ibuprofen or naproxen are the first type of medication used.

Disease-modifying anti-rheumatic drugs are the next step if NSAIDS do not relieve symptoms. The most commonly used drug is methotrexate. Others include hydroxychloroquine and sulfasalazine.

Biologic agents are a new class of drugs that also slow or spot the progression of the disease. They include enbrel, humira and remicade.

Cortiocosteroids are also used to treat severe juvenile arthritis. Given by mouth or injected into a vein, they reduce serious symptoms but they can cause unwanted side effects such as interfering with a child's growth.

Medications may be needed for several years until juvenile arthritis is no longer active.

"The outlook for these kids is better than it's ever been," said Farber. "The availability of these new drugs has revolutionized the way we treat both kids and adults."

Luke Richardson, 9, a fourth-grader at Malta Avenue Intermediate School in Ballston Spa, was diagnosed with juvenile arthritis when he was 4 years old.

"He started off with high fevers and a rash, but he had no swollen joints, which threw the doctors off at first," Luke's mother, Christine Richardson recalled.

"About six months after the diagnosis, he started getting swelling in his knees, his wrist, his ankles and all over."

Luke was on six medications for his arthritis before he saw a rheumatologist at the Shriner's Hospital in Springfield, Mass., who put him on a daily injection of kineret, a medicine used to reduce the pain and swelling associated with moderate to severe arthritis.

"He's doing much better," said his mother. "We don't see the fevers anymore or the rash. He deals with it very well. It's almost like a way of life for him. He plays soccer and basketball, and that night he might not feel so good. It's a give and take. Dealing with a chronic disease is not easy. But Luke is tough. It's made him very strong. He says he wants to be a doctor someday."

Saturday, March 8, 2008

Kids Get Arthritis Too!

Today was our first meeting with the JRA task force (family support group) since Charlotte was diagnosed in October '07. Today's topic of anti-inflammatory diets was led by a nutritionalist from New Season's Market. It was fantastic, I will recap it in my f/u blog.

If you shop online @ New Seasons or would like to try (I shop online & then pick it up curbside, its fantastic!) I can save you $10 on your next order. Shop online, put in promotion code GARDENHOME during your online checkout.
NOW...I gave you $10, so can you do something for me? It's actually for you too... I need you to be an activist. Arthritis affects you too! Here's how...

46 Million

46 million Americans suffer from some form of arthritis. As the most common cause of disability and the third leading cause of work limitation in the U.S., arthritis has a significant impact on our nation’s economy. Arthritis costs our country $128 billion annually; $81 billion in direct medical costs. Nearly 19 million people with arthritis are forced to stop working within 10 years of diagnosis.

And now here's how it affects my family directly.
Kids Get Arthritis Too! Charlotte.
Charlotte is one of 294,000 children with a form of juvenile arthritis including juvenile rheumatoid arthritis, lupus, and scleroderma. You know her story, hit the tag "Charlotte" at the bottom of this page & you can read her journey since being diagnosed in October '07, just after her 2nd birthday.

The Arthritis Prevention, Control, and Cure Act has 205 bipartisan cosponsors in the House and 46 bipartisan cosponsors in the Senate, yet 46 million Americans are still waiting for Congressional attention.

The Arthritis Foundation urges the leadership of the House Energy and Commerce and the Senate Health, Education, Labor, and Pensions Committees to act now on S. 626/H.R. 1283.

The Arthritis Prevention, Control & Cure Act would:

  1. Strengthen arthritis public health initiatives, allowing more people to be diagnosed early and avoid pain and permanent disability;
  2. Expand the reach of evidence based self-management activities such as weight control and physical activity, which have been proven to reduce pain and reduce health care expenditures;
  3. Ensure that limited federal funding for arthritis is used in the most strategic manner possible through the formation of a federal interagency coordinating committee; AND
  4. Authorize a remedy to address the country’s severe shortage of pediatric rheumatologists.
From Oregon - Darlene Hooley is on the HOUSE HEALTH Subcommittee.
From Washignton - Patty Murray is on the Senate Health committee.
If you are from another state - please look up who is influential on from your state on these two committees. Please send them a letter. Its as easy as copying this email or a link to a letter is below. Tell them to support the Arthritis Prevention, Control & Cure Act.
Tell your congressman about Charlotte and how she has been battling this since the tender age of two. And for the last 5 months, what she has been through:
  • How FORTUNATE Charlotte is to have Dr. Kingsbury so close at hand, a pediatric rheumatologist. Not every child has a ped. rheumy in their home state or within 50 miles from where they live.
  • Tell your representatives how fortunate Charlotte is to be on our health insurance but how EXPENSIVE it is for joint injections, weekly shots of Methotrexate, daily oral steroid prednisolone, and daily eye steroid drops of pred forte. Think of the children who's parents work without health insurance, children who go without medication because they cant afford it.
And now let me paint a picture of what Charlotte would be like if she we didnt have health insurance & we didnt have access to an amazing/responsive pediatric rheumatologist:
  • Charlotte wouldnt be walking for sure. Absolutely. I have no doubt about that because for the 1st month (october '07), every morning Charlotte refused to get out of bed. It hurt for her to sit at the table & eat breakfast, she just wanted to lay on the couch until her joints warmed up and then she could start limping around the house for the rest of the day.
  • And her eyes... she could have been down the road of glaucoma, cataracts or worse, blindness.
  • BUT: We have been treating her eyes aggressively since November, we have had consistent opthamalogy exams & access to our pediatric opthamologist. AND we have a responsive, caring pediatric rheumatologist who diagnosed & treated her joints within weeks of her initial exam.
But. We are appreciatingly fortunate. And we continue to learn to live with this disease that needs more research, more support, more understanding.
PLEASE. Write a letter to your representative. Include a picture of Charlotte. Tell them what you know.
THANK YOU!!

Monday, March 3, 2008

Eugene Road Trip

I took the girls on a road trip down south to celebrate our friend, Phoebe, turning 7. Phoebe is one of our favorite people in the world & its logical since her Mama is a favorite & the apple doesnt fall far from the tree. But honestly, they are one of those families, you love them all!! So lets not leave out the love for the boys: Eric, Cole & Alex. We had a fun time at Phoebe's gymnastics party where the girls got to jump, swing & have fun with Phoebe's school friends! Its a road trip that needs to happen more often, and will more frequently now that Charlotte is getting better at being in the car because Eugene has some AMAZING food & friends - and I miss them both! :)
The girls are ready to GO! We took Daddy's new car.

Charlotte LOVED the gymnastics! And I loved it too. After watching a child with arthritis freeze in pain for a month & then barely hobble around, you appreciate watching them run & utilizing every single joint they have as they speed run across the trampoline.

You never take their mobility for granted again. Ever.

Ellie in brown pants, red shirt running to the next event!

Phoebe in blue & Emma in the plaid wait their turn to jump on the trampoline.

Phoebe in motion!

Emma in motion!

Fun times! Thanks friends!