Wednesday, December 29, 2010

A little Bevin Background and my inspiration for this blog

I got the idea for a blog about Bevin’s JRA after getting a chance to get to know a family whose little girl was diagnosed with Early Myoclonic Epileptic Encephalopathy (EMEE).  They were able to keep all their friends and family informed of what was going on with Grace thru their blog.  And because of the blog, I was also able to follow along with her story and get to know Grace and her family better as well as learn about EMEE, something I had never even heard of.  It also showed me the courage and strength a family could have when faced with their child’s diagnosis.  Sadly Grace passed away in October, but her parents have kept up with her blog and the things they are still doing to find out why Grace had EMEE.  When I start to get stressed or upset about Bevin, I think of Grace.

Since Bevin’s been diagnosed we’ve had lots of questions and concerns and “How is Bevin doing?” from everyone and I hope thru Bevin’s blog I will be able to keep everyone informed on how she’s doing, doctor’s office visits, etc.  I also hope to help people learn about JRA.  To be honest my knowledge of JRA only consists of what I have been told or figured out in this last month, so as I learn things about this disease I will share my new knowledge.  I also hope to be able to find and get to know other parents who are going thru this with their children.  I personally don’t know anyone who has had to go thru this, so I would be very appreciative of any stories and/or advice from other parents letting me know what they have gone thru and experienced.

For those of you that don’t know Bevin, she will be 2 in February; she is one of the most independent 1 year olds I have ever known.  She was doing things at 1 that her brother just started doing/mastering at 4.  She also has one of the biggest tempers I have ever seen…especially for someone so small!  If she doesn’t get her way she picks up the nearest object and throws it.  For the time being it is quite comical watching this little person get so angry, but I know in her teenage years it won’t be so funny.  To sum her up she is a quirky little ball of fire.

Bevin also has a heart murmur that was discovered at her 4 month check-up.  As her pediatrician is listening to her heart he looks at me and says “have I ever heard this heart murmur before?”…Ummm NO! They did an EKG right away, which apparently is standard procedure, but when someone tells you they need to do an EKG on your baby it doesn’t matter how many times they tell you its standard, it still scares the crap out of you.  Luckily it’s nothing that we need to be concerned about and heart murmurs are pretty common, so that was a relief.

Bevin also has Eczema (since birth) and what will likely end up being diagnosed as Psoriasis, both of which tie into the autoimmune disease side.  She has what looks like athletes foot, but it’s possible it’s her Eczema…we’ve been trying a few different OTC things to clear it up, but as of her follow up appointment if nothing helps, we will have to get cultures to try and determine exactly what it is and likely get a prescription cream to get rid of it.  Every time I put the OTC creams on her feet she winces and/or pulls away, so I assume it’s painful for her.

As I mentioned in my first post, Bevin has always walked funny…since the day she started walking she has looked like a new born dear trying to walk for the first time (or a drunken sailor).  We always assumed it was something she would eventually “master”…now knowing that she has JRA and that both of her hips are affected it’s likely she walks the way she does to compensate for her hip pain.  Her limp can be better or worse depending on the day.  Yesterday she was practically dragging her leg behind her, this morning it wasn’t as bad.

Thank you to everyone who has taken the time to stop and read Bevin’s blog and get to know her a little better.  

Below are some pictures and a video of Bevin's limping (she is not a fan of the video camera, hence the scream at the end).

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…