Saturday, October 24, 2009

Dose one

Bean got her first Dose of Methotrexate last night. We noticed NO side effects today. She had a friend come over and play, which was a great distraction...but really, I don't think she noticed anything bothering her. I am hopeful that it stays this way - though I have no expectations. The medicine builds on itself.

First dose - went off without a far.

Thursday, October 22, 2009

A plan.

We took a trip to Children's today with Bean.

Bean has been on Naproxen(Alieve):
Nonsteroidal anti-inflammatory drugs (NSAIDs) — These medicines provide pain relief and reduce swelling. Some are available over the counter and others require a prescription. Examples include ibuprofen and naproxen. These medicines can cause nausea and stomach upset in some people and need to be taken with food.
She has also - for the past two weeks been on oral Prednisone:
Corticosteroids (steroids) — In patients with oligoarthritis or in patients with very painful/swollen joints with other types of JIA, these medications are very effective when given as an injection (shot) into the affected joint. In younger children or if several joints are injected, sedation is often used. In patients with more severe widespread disease, these medications occasionally need to be given by mouth as a pill. These medicines when given by mouth are effective, but can have serious side effects—including weakened bones —especially when used for long periods. Doctors generally try to avoid using steroids in children because they can interfere with a child’s normal growth.

Obviously this was a stop gap measure - we needed a plan.

Dr. H laid out three options - this is the information as I remember it....with some internet based research in between...

1. Methotrexate - a disease modifying drug - has 20 years of research.
20 % of children get side effects - stomach/abdominal pain 12-24 hours after taking the medicine, mouth ulcers -- some say hair thinning/loss.
Suppresses production of blood cells.
Need to take folic acid.
Long term possible liver injury.
Need Serial blood testing to check on liver - first every month...hopefully every 2 months after that.
2 ways to administer - oral (pill) or injectable - once a week.
Effective in 30-40% of SJIR kids

Disease-modifying anti-rheumatic drugs (DMARDs) — These medications work by changing, or modifying, the actual disease process in arthritis. The aim of DMARDs is to prevent bone and joint destruction by suppressing the immune system’s attack on the joints. Methotrexate is the DMARD most often used to treat JIA. Other medications used include sulfasalazine and leflunomide.

2. Enbrel - biological modifying drug - has 10 years of research.
It works by blocking the protein molecule TNF and its function (a marker in SJIA patients)
Side effects include decrease in immune system - especially fighting tuberculosis
Administered by injection once a week
Effective in 50% of SJIR kids

3. Kineret - a newer biological modifying drug - it is newer.
It works on blocking the protein molecule IL1
Side effects include decreased in immune system -- especially for severe infections like bacterial infection, pneumonia, sinusitis
Administered by injection daily...though it burns at the injection site
Effective in 80-90% of SJIR kids

Biological modifying agents — Biological agents are medications that directly target molecules or proteins in the immune system responsible for causing the inflammation. They are used to treat children with more severe arthritis that is not responsive to other medications and are given by injection or by infusion. Etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira) and anakinra (Kineret) are examples of this type of medication.

Also - one we know but didn't talk about yet:
Physical and occupational therapy - Exercise, physical and occupational therapy can help reduce pain, maintain muscle tone, improve mobility (ability to move) and prevent permanent handicaps. In some cases, splints or braces also may be used to help protect the joints as the child grows. Special accommodations with schools may be needed to adjust for children with limitations from their arthritis. The Americans with Disabilities Act (“504” plan) can help facilitate these issues.

After much discussion....we chose the first. Methotrexate.
It is the one that is least invasive and the most tested...when there are no good decision...ya have to pick the lesser of the evils.

Bean gets her first dose tomorrow night.

Wednesday, October 21, 2009


The steroids are doing crazy things to my little girl. Food, the quantity of food is amazing! Between the 4:15 pm, when she arrived home from school, and 6:35 pm when I put her to bed she consumed:

Tortilla Chips

Break in time....
12 chicken nuggets

Break in time....
Sunflower butter sandwich

Break in time....

How can you tell a child who is truly hungry they can't eat? I just slow her down....we talk about it being part of her medicine...but still. Looking forward to a day when she is off the steroids!

Tuesday, October 20, 2009


I gave Bean a shower tonight...the effects of the steroids are evident.

Her belly…the one that I have always been amazed is so flat – was distended… firm – looked like it belonged on a different body.

I washed her beautiful dark brown curly locks…and my tears started to roll down my cheeks…the thought of her thick beautiful hair, the hair that at four years old she donated 11 inches of to locks of love….the thought of her thick beautiful hair thinning…falling out…is overwhelming to me.

It is so superficial all of it – I feel so guilty. We are so lucky that what she has is life altering and not life ending….I keep telling myself that. I keep telling others around me, in the hopes that at some point my heart will believe the words coming out of my mouth.

My wish for her – may she not suffer pain anymore, may she be one of the 1/3 of children who outgrow SJIR… may her self esteem prove as strong willed as she is….

Monday, October 19, 2009


It is time for me to educate myself about Systemic Juvenile Idopathic Arthritis...What do I know, what can I handle, how much I don't know or where to look.

A quote from a pharmaceutical sponsored website:
Children get JIA, but families live with it

JIA is not just a child's disease. For every kid with JIA, there's a family living right alongside—helping that child manage the pain and stiffness. Being the parent of a child with JIA can be an overwhelming responsibility. You have to make decisions that affect your child's life. A better understanding of JIA and its symptoms will help bring you up-to-date on your child's treatment options.

Right now - all I would like to do is be sad, I'm not ready to mobilize yet. I see/read of all these families the mobilize around their sick child and pull it together and do the extraordinary...BUT I HAVE FOUR CHILDREN! It isn't fair...but as Scar said..."life's not fair"

Sunday, October 18, 2009

How it started...

Bean has been sick...should I go back to December 2008. A co-worker mentioned that my kids don't get sick...that I never seem to take a sick day because of my about a kinahurra. First was Bean on December 30th - 102.5 fever and croup! By New Years Eve we had sick children...4 sick children!

So they time for Bean's birthday - she turned 5 on January 5th!

And MLK weekend was supposed to have her birthday party the morning of the 18th. We had spent a lovely Shabbat at the M&M R's and a lovely lunch at L&M R's - Sunday we got up to make a cake for the party. 30 minutes into it Bean started vomiting - she perched herself on the couch - and we had to postpone her party...we decided to wait two weeks, and re-schedule it for February 1st. Bob got the bug on the 19th - and was able to stay home at watch the inauguration on the 20th...Puppy got it on Tuesday the 20th - Bean was back to school that day...and on the 21st Belle got it!!

On the 22nd - Bean got 103.5 fever. She said everything hurts. We thought she got the flu! It was the first time in my children's lives that I missed getting them their flu shot. We took her to the ped - wasn't strep. In-laws were here - we tried to do the normal stuff - motrin made a trip to the Silver Diner and Air and Space museum doable.

January 28th we took Bean back to the ped - for more blood work. My best friend had her baby on the 31st and we planned to go to NJ for the bris. February 3rd we were back at ped for more bloodwork...she STILL had a fever!

On February 4th - Bob's birthday I took Bean with me to get candles for Bob's birthday at school - walking out of the store Bean fell to the ground, her legs fell out from underneath her...she couldn't walk.

That afternoon we got the call to have her admitted to Children's Hospital (during a terrible meeting at work - different story line). We chose to go to Silver Diner with the kids for Bob's birthday, Bean was doing ok - and it seemed unfair to Bob's to not celebrate after we went to have her admitted... Mom came down to help.

I spent the first night with Bean in the hospital. Early morning blood draw - beeping machine of the baby next to us. On February 5th Bean had a chest xray, and two separate parts of a bone scan. The bone scan without sedation...first kid in the hospital to do so!!

We were hoping it was "just pneumonia!"

I spent the second night with her at the hospital. I got no sleep that night, but she did. Grammy came to visit at the hospital, and I tried to get a shower...they were broken!!

J brought the kids down to see Bean before Shabbat. They got to spend some time together before mom took them home. I stayed for the optomatrist visit. And then went home to sleep while J stayed with her. We missed Baby B's bris...sad and overwhelming on many levels.

It was Saturday, February 7th and Bean walked for the first time in days!! I stayed with her that night.

Grammy came down to be with her on Sunday. And slept over. It was the first time in a while J and I got to be with the other kids together.

Monday the 8th Bean had an MRI....and Grammy had to go back to NY.

Tuesday, February 9th Infectious Disease says they are done with her - on to Reumatology!

Wednesday, February 10th J brought all the kids for dinner at the hosptal. Bean was feeling a bit better. It was nice to be together!!

By Ferbruary 11th we were giving been 5 doses of oral liquid meds a day. She was hurling thing and going crazy. Not the easiest of patients.

And then we had to cancel our trip to California for cousin R's bat mitzvah. I wrote that day: "overwhelmed by the irony missing last year's pres weekend flight for snow- and this year for fever (thought it is 65)...this weekend doesn't have good luck!"

That day Bean said she was done watching tv! Ever heard of such a thing?!?

Belle lost her first tooth....Bob was her tooth fairy! And I missed the kids Cubs Club performances.

On February 12th I took Bean for her last invasive test. The bone marrow test. We needed to rule out the worst. The kids all came straight from school and played with Bean in the playroom. And then the news was NOT Leukemia!! We were all going home. No diagnosis...but a plan.

February 26th we took Bean for a follow up at Children's with Dr. J. We were able to start tapering off her prednisone.

May 7th J took Bean back to Children's with Dr. J. He reported back: "Best...Dr.Appt...EVER!! I posted on Facebook:
It looks like we might be ARTHRITIS FREE!! She is off meds and we don't need to go back unless symptoms come back!! "Best Dr. Appt EVER is right!"

June 4th Bean complained of her knees "not working."

June 16th Bean "graduated" from pre-school. I posted on facebook: "got teary eyed at Bean's graduation...watching her move and shake while dancing...4 months ago I wasn't sure she would move like this again...thank god for miracles!"

August 4th Bean had 104 fever - I took her into Dr. C - he said we were looking for
"good news like a UTI or ear infection!"
Neither were true, no other symptoms - looked like a repeat fever with unknown origin. It left as fast as it came.

September 21st 1:30am - we returned from a trip to NY, Bean could not climb into her bed. She had a 102 fever, couldn't walk so well. She stayed home the next day with a swollen left knee, & fever. We took her in for blood work on the 22nd, we put her on Naproxen.

September 24th Bean returned to school. The school agreed to take her back even with her fever, knowing that she wasn't contagious. But not only did she have a fever, and a swollen knee - her fingers hurt and 6 of them were swollen. They didn't even look like they belonged on her hands.

October 5th Bean continued to have a fever of 100.2 she was down 4lbs, fingers & knees are hurting...sed rate is up to 80... we were STILL praying the naproxen to starts to work & we could avoid steroids.

October 6th Bean dressed herself and skipped out the door on her own, for the first time in 3 weeks. I posted on facebook:
"There may be a light towards the end of this tunnel...hope the next tunnel is FAR FAR AWAY!"

October 8th I took Bean back to Children's for more blood work and to be seen by the new rheumatologist, Dr. H.

October 9th Dr. H called to report back on the findings, give us a diagnosis and outline for me the next steps. I posted on facebook:
We got a diagnosis. Systemic juvenile idiopathic arthritis. We pray that Bean is one of the 1/3 of children who will outgrow this debilitating disease....and for the strength to make the best decisions as far as medicine to treat her condition...and for the strength to tolerate her behavior on steroids!!