Friday, August 31, 2012

Appt was yesterday, our next steps...

First day of school with my big sister!

Hi everyone,

First of all - let's talk about how Lucianna is doing? She has been showing some signs of improvement but the pattern is something like this:

3 good days of walking, [albeit hobbled], but walking. She hasn't been able to climb stairs or step up on stools, but has been very motivated to move and is doing well at it.

...then a day or two of refusal to walk - and pain/discomfort when we try to push her


In the last 2-3 weeks, we have seen more days of hobbled walking than not walking at all, which is great! July was our minimal walking month - August has been much better. We have been very encouraged by her sheer will to walk and the fact that she has been doing it more and more. She just completed her second week in preschool. She has done well in school and I often get reports from Mrs. D that she's walking well or getting around well. Mrs. D has noticed that early morning, she doesn't walk hardly at all, but right about 11am, she's does a lot better. (That makes sense since her morning meds kick in about that time.) I have had the pleasure of receiving picturemail to my phone of Lucianna really enjoying school. A definite perk to having such a wonderful teacher - getting this kind of reassurance while at work is priceless. We do find that when she really wants to do something, like play with a friend, get a toy, etc., she fights through the pain and walks when she needs too. Her doctor says to let her dictate her walking.   Her sleep however, is usually very interupted with discomfort....(and so is ours because of it).

So present day: she had her follow up appointment with her rheumatologist at Hopkins yesterday. Her doctor said that her latest blood work taken August 22nd, shows "significant", but not "off the charts", inflammation in the blood. Upon his examination, he found that she has fluid/inflammation on her left wrist, left knee and left ankle.

We were a little caught off guard because he started out the appointment talking about how her xrays were normal and he seemed to want to tell us how great she's doing, then he quickly changed his tune to tell us that he wants to take the next step in her treatment plan. We were not expecting this or prepared for it. So what he proposed is increasing her Naproxen once more to the maximum dose, {6 ml's in the morning and evening, and 5 ml's at lunch, basically, an increase of 2 more ml's - for other parents reading, she is 42lbs.}. Her father and I don't see how 2 ml's is going to make that much of a difference, but we really hope it's a recipe for success.

Her doctor wants to monitor her for the next 2-3 weeks. As far as what kind of improvement he wants to see, he wants to see her walking normally, having no discomfort/pain - pretty much like she was before getting sick. If she makes "a decent improvement" but is not fully back to normal, he said we can continue with the increased dose of Naproxen and monitor her a little longer. If she's still having these up and down days, pain, limping, limited mobility, etc., he has recommended for us to move her to a second line drug: Methotrexate ["MTX"].
WebMD's short summary on Methotrexate (for JIA/JRA treatment). As you can read, there are definite pro's and con's to the drug - as a parent, you focus more on the cons since you want to protect your child from all the potential side effects. We want to clearly educate ourselves so that this decision is made with as much confidence as one can have in this situation. The alternative to not using MTX and leaving her on the current plan is that with the fluid/swelling and inflammation, her joints are getting damaged. Having a permanent limp or one leg longer than the other, is a very real concern. So we have to weigh the risks and be open to this option. We especially feel that her pain needs stomped and her mobility returned. It's as simple as that.

Her doctor also said we should monitor her ups and downs and see if we can find a coorrelaton to the barometric pressure. I am going to do this to see if there's any relationship there.

So is it JRA/JIA or not? Yes, it is, but our doctor still says, let's treat the problem and not get caught up with labeling her since there is always a chance she has a miraculous recovery and it never comes back, (aka: mystery arthritis). What subgroup of the illness does she have, pauciarticular or polyarticular? (Pauci means less than 4 joints are affected and Poly means, 5 or more are affected....each subgroup has its own characteristics.) We don't know which one she falls in, and her doctor says that it doesn't matter that much. Pauci-kids usually have an increased risk of eye disease, but he says, he's seen eye disease in Poly-kids too. I also read that kids with Poly, have a harder time getting into and staying into remission. Right now I have counted 5 affected she's right on the cusp and as her doctor admitted, "could I have missed a joint in one of my exams, sure. could I have counted a joint that doesn't truly have inflammation, sure." So it don't madda.

So...the next 2-3 weeks are pretty important. He told us the side effects of the Methotrexate are rare at this low dose, and typically we would see results occur in about one month's time. If the Methotrexate does get her well again, studies have shown that removing it prematurely typically results in a recurrence of the if she responds to it, he'll keep her on it for 6 months, along with the Naproxen and try weaning her slowly. Right now, she would take it orally. If she has vomiting, etc., we would have to bypass the GI track and move to a once a week injectable form of the drug. Don't even get me started on how I will be able to give my child a shot. I am just not even going to go there right now. Sigh.

So that's the update. Neither of us were expecting him to suggest MTX since she's been walking more. We are currently trying to educate ourselves on MTX and learn as much as possible in case we have to go that route. Our hope though, (as it has been for months now), is that the Naproxen starts knocking out the inflammation and getting her back to normal.

I will keep you all posted as we move through the next few weeks. As always, your well wishes, prayers and kind thoughts are deeply appreciated.

Lucianna's Proud Mommy


  1. I was JUST thinking about you! Happy Belated Birthday to Bella! I was shocked to read that Lucianna's bloodwork showed inflammation again :(. I can't believe it. It's good to hear that she's doing well in school majority of the time and has a caring teacher. I didn't think MTX would come up in any future conversations. Sigh. Have you had much chance to go to the pool much now that school's started?

  2. Hi Winnie! We have had fair amount of pool time but really have mainly reinstated our hot tub that has seen little use in the last year. We use it about 4-5 times a week now. Daddy gets up, after very little sleep, and takes both girls into it BEFORE about 7am. The hot tub seems to help immensely since it's so nice and warm. We keep the temp about like a warm bath. I am starting to embrace the idea of MTX since I believe that after two months of Naproxen, something needs to change. I think the decision to move forward with a drug like this has to come from a place of desperation and hope. I am desperate to have my child's mobility restored and I am hopeful that she responds to it and has no side effects now or in the future. I hope Sophia is doing well! I miss hearing about her! -Nicole


Note: Only a member of this blog may post a comment.