Tuesday, December 28, 2010

Bevin's Adventure with JRA Begins

In early November of this year we noticed my daughter had a slight limp, because she had always walked funny (we always joked she walked like a drunken sailor) we just assumed it wasn't a big deal, in fact I recall thinking it could've been her shoes (she insists on picking out her shoes in the morning and tends to choose the same ones everyday).  After a week it wasn’t going away, but getting more noticeable.  I contacted her pediatrician who informed me limping in a child her age wasn't normal and we had an appointment scheduled for the next day (November 17th).  Of course during the appointment she was running around like crazy and jumping up and down on both feet/legs...seeing that why would we be concerned?  Turns out limping in a child, especially one as young as her (she will be 2 in February) is quite concerning and can be a sign of some serious medical issues, Leukemia being one of them.  Her doctor immediately sent us for x-rays and labs and my normally calm pediatrician who is always so good at calming any fear I have was suddenly not providing me with his normal reassuring words.   
Bevin (& Bubba) waitng to get her x-rays
On our way home after the initial appointment…it wore her out!

We got the x-rays back right away and he was able to confirm it was not a fracture or break that could be healing incorrectly and there was nothing else concerning in the x-rays, unfortunately the labs wouldn’t be in until the next day.  Being that we have Kaiser the lab results were automatically e-mailed to me as they came in (first one arriving at 3am)…reviewing those results without knowing what majority of them meant was not the best idea.  The first one that came back was her Sed Rate which was 38, standard was 0-20.  Then a few more came thru, all with pretty standard results (with the exception of her Lymphocytes which were slightly elevated).  Then we got the results for her Platelets; the first result said “Increased” and the next showed Bevin’s level at 560 when the normal range was 140-400.  I immediately started googling what that meant (not a good idea) and when you start googling the word Platelets almost every search engine pulls up numerous links for sites with information about cancer and leukemia…I was in tears.  Last but not least her Rheumatoid Factor came in, which was normal, and then her ANA, which was positive.  All this before her doctor’s office even opened for the day!

Luckily it wasn’t anything as serious as Leukemia, but she was diagnosed with JRA (juvenile rheumatoid arthritis) and I had no idea what that meant.  At first her doctor was positive letting us know that only her right knee seemed to be affected and it was likely minor and once this “flare up” cleared up it probably wouldn’t come back.  He told us that a lot of cases tend to be one flair up that clears up and may never show up again and based on what he was seeing, Bevin fit this criteria.  She was put on Ibuprofen every 6 hours to help with the inflammation. 

After a couple weeks on the Ibuprofen (and an increased dose) it just got worse and we were referred to a Pediatric Rheumatologist who we saw on December 6th.  After examining her, the specialist informed us it was affecting both of her knees and hips as well as her left ankle…to go from thinking it was only affecting her right knee to 5 joints scared me to death.

On our way home from seeing the specialist

Because there are no tests for severity of JRA, it’s a wait and see kind of thing, she was prescribed a new medication (Naproxen) and we left the specialist’s office with a large bottle of medication with three refills, a referral for lab/urine tests (which will have to be done every 6 weeks to make sure she isn’t having any side effects from the Naproxen), a referral for an eye exam and a follow up appointment in 6 weeks and our heads spinning.

Bevin had her eye exam on December 23rd; being almost two she was of course uncooperative and the doctor was not able to complete the whole test, but was able to do the majority of it and we were told her eyes are currently fine.  He also mentioned that they don't know why, but eye inflammation is less likely the more joints you have affected by JRA, so because Bevin has 5 that was a good sign.  But then he told us that eye inflammation is more common in girls and in kids whose ANA test came back positive...which both apply to Bevin, so I think her less likely and more likely criteria just cancel each other out.  We did find out that inflammation of the eye is something that can happen with JRA and if it goes uncaught it can be quite serious (a person could lose their sight or their eye(s), because of this she will have to have eye exams every 3-4 months.

Today is day 22 on the Naproxen and it’s not helping.  We contacted the specialist, who when he prescribed the medication indicated he was starting her on the lowest dose so he had the flexibility to up it as needed.  When I contacted him to let him know that it wasn’t doing anything I was told he wouldn’t make any changes to it for at least 6 weeks.  I know that sometimes medication can take some time to work, but with the weather what it is right now, it’s just making her JRA that much worse and pretty much counter acting the Naproxen.  Problem is the Naproxen is only working on reducing the inflammation and is the most minor of all the drugs she could be on, which is why it’s the #1 go to for JRA patients.  The stronger drugs work on the actual problem itself (her cells are attacking themselves), but they affect the immune system and have more side effects.  So for now we wait until her appointment in mid-January. 

As a parent, when you worry about the things that could happen to your child or any illness or medical conditions, arthritis in a 1 year old just doesn’t come to mind.  This is the last thing I ever thought my children would be diagnosed with and now my daughter has it.  I am thankful that it’s JRA and not something more serious, like Leukemia, but like any parent, I wish she hadn’t been diagnosed with anything.  It’s heart breaking to watch my 1 year old limping and to see the limping get worse and worse.  Most morning she can’t even walk and if she can she has to hold on to the wall and every piece of furniture in sight.  The upside is that because of her age, she doesn’t know any better, so as soon as her joints loosen up enough during the day she can take off running and jumping, limp and all…she does tend to fall more and with those falls come tears (before the limping, if she fell, she would get up and take off again without a second thought), but after a bit of a rest she is able to get up and keep going.

And so the adventure begins…

5 comments:

  1. I know it's a tough situation, made tougher by having to watch your child in pain and not being able to help but things will get better. Just have to find the right medicines to help her, sometimes it takes months to find a combination that works. My husband has RA and has had it since he was a kid, some days you'd never know he has it, others you can tell he's in severe pain and trying to hide it. Kids are resilient and with you catching it early there's plenty of time for her to adapt and find something that works. You're a strong, smart, beautiful mother and you're doing the best you can and that's what matters. It may not seem like things are getting better for a while but just remember that everything happens for a reason.

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  2. Thank you for sharing. Know that you have many people near and far that are wishing they could send you more than just happy thoughts and encouragement.

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  3. Nicole, just read your blog and comment on our blog this morning. As I am scheduled to go into Kaiser today for some minor surgery myself, your story has brought me courage. You are such an amazing person and I know you will continue to keep up the fight in finding root causes for Bevin's challenges and doing whatever you can to remedy them in seeking all of the help and research that you need. Even in her passing, we are still finding that it is ultimately up to us to advocate for Grace and make sure that her short time here was definitely purposeful. Seeing you start this blog about your own daughter has meant the world to me. I hope it is as helpful and therapeutic as it has been for us. I am including Bevin in my prayers and thoughts every day, as well as your family. I hope that in 2011 you find the answers that will bring peace and happiness, no matter what life's road has in store.

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  4. Hi Nicole, thank you for sharing Bevin's story. I know this may seem like a lot right now, but you and your family will be able to handle it. With adversity comes strength. You'd be surprised what you can handle when the needs of your child calls upon you.

    I don't know much about JRA, but it sounds like it can be manageable with the right meds and treatment. I hope to learn more through your blog. We'll be pulling for her during this difficult time.

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  5. Hi Nicole! I just read your blog and my heart ache's for Bevin and you and you start on this journey. What Brien said about being able to handle it is exactly true. It's just an amazing strength that comes to you. My daughter Meghan started having seizures two years ago, and everyday is a battle filled with so much unknown, but I pull my strength from her.

    I have to tell you that Meghan sounds exactly like Bevin. Because of Meghan's seizures and the medications that she is own, we have said 100 times that she walks like a drunken sailor!!! We even call her Captain Jack sometimes :) Also, she has the strongest personality along with the fit throwing. Hang in there :)

    Thank you for sharing Bevin's story. I will keep you all in my prayers!

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