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

...Repeat

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 joints...so 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 symptoms....so 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.

Love,
Lucianna's Proud Mommy



Saturday, August 18, 2012

"I ask not for a lighter burden, but for broader shoulders."

Aug 4th - Family Reunion - The only thing she likes more than jelly beans, is cotton candy!


Hello everyone,

It's been a while since I've given you a status on Princess Jelly Bean.  As you saw in my previous post, this illness is a roller coaster ride.  One day we think she's starting to really respond to the Naproxen and is getting better...two days later, she barely walks.  As of late, her complaint is still of knee pain and more recently hand/wrist pain with the left hand.  The hand/wrist issues are very problematic since washing her hands, holding her hand, even bumping it, causes her to yell out that you are hurting her.  I have mistakenly done this plenty of times.

I have to admit, I'm weary about the change coming this week.  Both girls start school on Wednesday.  While I am happy for this exciting new experience for Lucianna who will be entering "Smart Start", I am fearful that I can't be there to protect her.  Will another child accidentally bump her, or push her down or grab a toy from her sore hand?   These are the concerns I have, but the reality is, they cannot be controlled.  What gives me peace of mind is that Lucianna has an amazing teacher.  She is new to the school and we met her a couple of weeks ago to make sure she understands the full scope of challenges she will have with Lucianna in her class.  We were grateful that she has been not only very receptive to taking her on as a student, but clearly is a caring, warm person who wants to do what she can to help Lucianna have as much normalcy as possible.  Bella will be in kindergarten this year...which is baffling to me.  Why does it have to go by so fast???

At this point, I know a few things for sure - things are "day to day" and sometimes "hour by hour" with Lucianna's health.  When she is feeling better, she becomes little Miss Jokester. She is silly, talkative and definitely shows her humorous side.  This is my indicator on how she is feeling on the inside.    Last Monday, she had a day that was so wonderful.  She did a little dancing in the kitchen and moved about freely without any assistance.  Almost all day she was getting around beautifully...then two days later, it all changed.   We have spent the last several weekends doing "fun stuff" despite her limitations - see pictures below.

Currently, we have blood work to be done and need to find her a physical therapist that can accommodate a 3 year old.  Her next rheumatology appointment is August 30th (Bella's birthday).  

If we have any major changes, good or bad, I will definitely post an update.

Many thanks for all the well wishes.
Lucianna's Proud Mama


PICTURES OF WHAT WE'VE BEEN UP TO THE LAST FEW WEEKENDS!


Making "low-inflammation" oatmeal cookies with Daddy.

Jumping on a trampoline with Daddy & Bella at the family reunion

The Dizzy Dragon ride (with Grandma) and motorcycle ride at the fair!
At the fair checking out the animals.  (The stroller has become essential when on outings.) 


Sticker art books, compliments of Grandma & Papa (HOURS of FUN!)
My company picnic:  She looks all weird in this photo because I had to hold her hair back for the face painting.  She didn't want it washed off and LOVED IT!

This was their first experience with face-painting.  They were absolutely over the top happy. 

Demonstrating the "leaning back position" of her new umbrella stroller equipped for children up to 50lbs. Love this thing, and it was $60 delivered from Amazon.  (First Years - Elite.)  Not good sunshade or storage, but so easy to push her in!  We plan to send it with her to school.

**We find that if we continue to do things as we did "before her illness", it makes our lives feel less affected by it.  I have to think-outside-the-box at times, and plan as much as I can with regard to bringing a stroller and considering what I can do on my own, but it's important that we don't allow this to control us and to minimize our quality of life.   

She may have JRA...
but it doesn't have her.

Wednesday, August 8, 2012

Roller coaster ride...(+ update)


Daddy & Lucianna - July 17th

****UPDATE IS BELOW****

Hi everyone,

It's been a while since I have written a post but we have been hoping to share some more good news.  Unfortunately, Lucianna has not progressed like we had hoped.  Although her last appointment was super encouraging, we haven't seen the results we expected in the weeks to follow.  Since that appointment she has only had a handful of times where she has walked.  More recently, she has been unable to put weight on her legs, making bathing and dressing her quite challenging, and she has been complaining of her left hand hurting and unable to use it.

We emailed her rheumatologist explaining her condition.  He responded that he wants x-rays today if possible or tomorrow at the latest of her left hand and wrist, bilateral pelvis, both knees and both ankles.  After he reviews the radiology reports, he will advise us on next steps.  He is going to be away for two weeks starting Friday, so I am hoping we receive some guidance before he leaves.  If the radiology report isn't ready by then, we will work with his colleague who is another Pediatric Rheumatologist at Hopkins.  At this point, we want to get Lucianna's pain and symptoms under control.  We miss seeing her walk...

Please keep her in your thoughts.  I will update you as soon as we know where we will go next.

Love,
Lucianna's Mama

*************************************************************

UPDATE FOR JULY 8th and 9th:




Hi everyone,

The girls and I got the x-ray done last night, 8/8 at 8:30pm at the hospital. Despite my fears of taking two young kids to a hospital by myself at 8pm at night, the girls both did great! Bella was a great helper and entertained her sister and Lucianna was a very good patient!  (Although, I did have to promise a lollipop...no surprise there.)

The report came back and everything was NORMAL!  HOORAY!  ....BUT WHAT NOW? 

We still don't understand why her symptoms aren't matching the doctors findings.  It's so puzzling and frustrating!  How can so many things be normal but she's not walking.  Again the doctor believes that we should continue with Naproxen, and follow up with some moist heat packs.  I asked him if physical therapy may help her to gain the strength back and keep the joints mobile, he agreed, and wrote her a script for that as well.  We should receive it in the mail in the next few days.  He also wants to have her lab work run again to see if there are any significant changes since June 28th when it was checked last.  We spoke with our pediatrician who suggested a course of steroids, but our rheumatologist does not agree with that at this time.  Our pediatrician also says that in order to fully diagnose JRA/JIA and it's subgroup (pauciarticular or polyarticular), it could take over 6 months so that the doctor can see "patterns" in her symptoms. 

So once again...we still have very encouraging news, and are just waiting to see progress out of our little jelly bean queen.  While it's very hard to be patient, we are still very hopeful that she'll start improving very soon and pray that despite her reluctance to walk/stand it still may be muscle atrophy/weakness.  Fingers are crossed! :)    PS:  She walked some today after Daddy did some time in the hot tub.  It was so wonderful seeing her walk.  Today was a good day! 

BELLA & LUCIANNA WITH THEIR GLOW BRACELETS 
(A treat from the radiology department - they LOVED getting these!)
<In this photo they are actually in the complete dark.>


Thanks for all the well wishes!
Lucianna's proud Mama