Three Years: The Fight Thus Far...

I know. It has been a while since I've blogged about what is going on with Mia. I am way overdue for an update...and, this is a long one, but a necessary one. This is my "journal" to keep track of where we are at in our battle against JRA. So, brace yourselves as I bring everyone up to speed on Mia's fight....

But first, let's back up a bit.

Spring 2009 - FLARE!
Mia had a major flare. The worst one yet. And, it was awful! She needed to have the fluid on her left knee and right elbow drained and injected with steroids. We saw immediate results afterwards and the inflammation when down very quickly.

July 2009 - Is It Lyme?
After much research, and a very looooong conversation with Mia's rheumatologist, we looked into treating Mia for Lyme Disease. We have several family members and friends who were diagnosed with Lyme, as well. I have not publicly mentioned this until now because we knew there was a lot of controversy regarding "Is it Lyme or JRA?" BUT, when you have a child who you have to carry all over the house because they can not walk because their joints are swollen, inflamed and their arms or legs won't straighten out, you will do whatever it takes to make the pain stop. The way we saw it was if anything we'd be ruling out Lyme Disease. If it turned out to be Lyme then great, it could be treated. And, this would be over. But, if it wasn't Lyme then we'd know for sure and we could write it off the list and could move on.

Mia took Lyme meds (Biaxin and Plaquenil) for four months (July - October 2009). Her doctor, a Lyme specialist told us, "If it is Lyme, she will have a flare in her joints within 2-3 months from now." Well, that did not happen. Instead, she had a flare when her rheumatologist predicted she would have a flare - about one year after the steroid treatments. So, now we know (and now you know). We can rule out Lyme. Regrets? Nope...not any. Moving on..

October 2009 - Taking a JRA Break
We were able to stop physical therapy and, basically, put JRA on the "backburner" for a while. Mia's joints looked excellent and there was no reason for her to continue her weekly PT sessions. We were thrilled. It was nice to be "normal" and not think about joints, meds, physical therapy, and flares for a while.

Spring 2010 - A Mild Flare...But A Flare Nonetheless
Mia's joints started to flare up again. We started physical therapy up again to help reduce the inflammation. At this time, Mia was still on ibuprofen. In June, her youngest brother was born (yay!) and by August the flare continued. Her father took her for a follow-up appointment to see Dr. Lopez and that is when he switched her from ibuprofen to Indocin. He put her on it for three weeks saying, "If this new med does not reduce the swelling on her joints, then we will drain and inject them again." But, the Indocin worked. And, despite the exhausting side effects this new med has on her (moodiness, iritability, sleepiness - she takes a 2.5 hr nap every day), it has helped to reduce the swelling and fluid on her joints.

Fall 2010 - "Making Progress"
I would like to entitle as, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 1." And, I am sure I am not the only parent out there with similar frustrations. Our insurance company sent a letter to Mia's PT, and to us, saying Mia was no longer "making progress" and they will no longer cover physical therapy. Wonderful. Isn't "making progress" par for the course?? This is how it has always been: she has a flare and then she "makes progress!!' Through physical therapy, meds and prayer she "makes progress," gets better and then we wait to see what happens. She is constantly "making progress!!!." I'd love to know who made this call. Obviously, it was someone who does not have a clue about arthritis or autoimmune diseases. Bah!

Lucky for us, a grant was offered for Mia to continue PT. She is the first patient to benefit from this grant. If it wasn't for this grant, physical therapy would not be possible right now. God provides!!

October 2010 -Mia's Three Year Anniversary Since Her Initial Diagnosis and...Scoliosis
Yes. Scoliosis. For those "non JRA-ers" out there, let me explain. When a joint is inflamed (in Mia's case, her left knee), it causes increased blood supply to the bone growth plates situated near the joints. This causes that limb (or digit, like Mia's big toe on her right foot that started to become enlarged when she was 15 months old) to grow faster than the other limb. For a long time, Mia's left leg has been 2cm longer than the right. It was never this bad in the beginning, but over time has gotten longer...which, in turn, affects her hips, back, spine, shoulders, etc. Right now, her spine is leaning to the right and her shoulder blade looks sunken in. When she runs, she swings her left leg out and around. And, she skips to hide it....or to hide that she is limping. It is definitely not something that should be ignored.

So. How do you correct something like this? Simple. Put a lift in her right shoe and "voila" she straightens right up. However, even though this is the second time since she was diagnosed that her PT has highly recommended a lift, this is also the second time her rheumatologist has said she does not need it.

And, here is where our frustration lies.

First off, her rheumatologist claims the left leg has to be 2.8cm to qualify for a lift. The PT says, in so many words, "That is a load of crap." Neither she nor her colleagues have ever heard of such a thing (keep in mind Mia is the second patient of hers that our rheumy has denied a lift to; there was another little girl he said the same thing about a couple of years ago and the parents met with a pediatric orthopedist anyways and had the lift put in). The rheumy says, "What happens when she gets used to the lift?" The PT says, "What is worse? For her to get used to a lift OR for her to get used to the scoliosis and used to a shoulder that is up to high and a back that is not correctly aligned and used to swinging her left leg out when she walks?"

(I agree with the therapist)

We did request for her to have another scanogram (bone scan) done to accurately measure the legs to see how much longer the one really is from the other. But, when I asked the rheumy he said that he only likes to do scanograms every two years because every time we have it done it puts radiation into her body. The last scanogram was done in April 2009 so she is up for another one in April 2011. So, the only option he is giving us at this point is to wait, which I refuse to do.

With that said, we plan to see a pediatric orthopedist in Boston to get a second opinion. It is the smart thing to do.

Moving on to her...

Eyes
What a rollercoaster we have been through recently. Mia has gotten her eyes check every three month since she was a year-and-a-half old for uveitis. We never miss an appointment. It is that important to have her checked. Uveitis can pop up out of no where. It is serious and not something to mess with. That is why her doctors are very proactive when it pertains to anything that happens with her eyes. Thank God for excellent eye doctors! Up until now, Mia's eyes have been clear with no signs of uveitis or any other eye ailments. Until...

Saturday, October 23 Mia came back from ballet class complaining that her left eye was bothering her. I kept an eye on it throughout the day. After she took a shower that evening, she said to me, "Mommy, my left eye won't stop running!" Around midnight, I had to go in to her room because she was crying and the left eye was all goopy and crusty. I immediately thought, "Great. Conjunctivitis." Mia had not been around anyone with conjunctivitis, that I was aware of. So, Sunday morning we started erythromicin drops and immediately the goopiness stopped. I remember thinking, "How strange that it cleared up so fast. That's a first!"

And then, on Monday this nasty, irritated blister appeared on the inside of her left eye and it got worse and worse.



By Wednesday, it was horrible. So, I texted one of my JRA mom friends, Joanne (thank God for other JRA parents out there who understand!) and she suggested I email the pictures immediately to Mia's uveitis doctor, Dr. Foster. He responded immediately and said she needed to be seen.

My husband took her in the next day to have her eyes checked and was told Mia has....Herpes Simplex Virus in her eye. Wonderful. Like she doesn't have enough that she deals with already. Dr. Foster told my husband it was a good thing we brought her in because left untreated the damage to the eye could have been very serious.

They did blood work to find out if the virus was in her body. In the meantime, Dr. Foster prescribed Zirgan. And, this is the part I'd like to entitle, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 2." Because this drug is new to the market and has not been reviewed yet, they wanted to charge us $400 for it! I was on the phone all day with the pharmacy, insurance company and the doctor's office. Finally, a nurse called me back saying she spoke with the insurance company and they would cover it and it would only cost us $50. That is so much better than $400.

November 2010 - Eye Follow-up
She went back in for a follow-up appointment for her eye one week later. They said she does NOT have HSV in her bloodstream. Thank God! However, we need to continue the drops for her eye until they are gone and follow up one more time this Friday. So far, there has been no inflammation in her eyes...no cells, no uveitis. But, they are telling us this does not mean it could not stir things up in her eye. So, we are back on track with our every-three-month schedule.

Well, folks. That's where we are at with Mia's JRA journey - weekly PT every Thursday, Indocin 3 times a day and she still does 1 tsp of cod liver oil to keep the inflammation down in her body. We have not had to put her on steroids because, so far, we have been able to control the inflammation in her body with NSAIDS. She is still on a GF, DF diet. We have allowed eggs back in...because she loves them and they don't seem to affect her. This fall, her doctor and therapist approved two extracurricular activities, which also benefit and strengthen her joints: ballet and swimming. She does both weekly and really enjoys them both! And, we enjoy seeing her pain-free and happy!

In The Meantime...

We will continue to stand and believe for Mia's complete and total healing in her body. And, we will continue to pray for the other children who also have this horrible autoimmune disease. We pray for peace for their parents in making the hard, heart-breaking decisions concerning their child's health. We pray for strength for them and their child(ren) with every injection they have to give their son/daughter so they, too, can be a "normal kid." And, we pray for an answer to put a stop to this awful, puzzling, bone-destroying disease.

“He's your bodyguard, shielding every bone; not even a finger gets broken.” Psalm 34:20