Monday, August 12, 2013

Ah! We Have Some Direction! . . . .

So we had the appointment at the Lancaster Cleft Palate Clinic last Tuesday, to discuss Anna's TMJ issues (past active arthritis; significant damage to the left TMJ).   What a GREAT team of doctors and staff---and they are indeed a TEAM.  The primary doctors appropriate to Anna's care were the oral surgeon, the orthodontist, and the plastic surgeon (there were other specialists available, but Anna did not need an audiologist nor a surgeon who specializes in dental implants).  One of the best aspects of the appointment was their candid discussion and the time they spent with us---we didn't feel rushed at all, and they wanted us to understand everything they were saying and recommending and why (I had shared a little bit of our experience with the doctor in Philadelphia and why we had no interest in returning there -- very rushed, didn't elaborate on the reasons behind her recommendations, etc.---left us with nebulous information and no concrete answers).

While these doctors are familiar with the TMJ replacement procedure, but they do not recommend that for Anna unless her TMJs (at some point in the future) stop functioning altogether (and they explained all the reasons why, which I really appreciate and understand).  They DO feel that Anna is a good candidate (and in need of) jaw reconstruction (and orthodontics, which go along with jaw reconstruction surgery).  They would reconstruct both the upper and lower jaws.  This would entail probably about two years of orthodontics, extraction of wisdom teeth, jaw surgery, and then a few months to a year of orthodontics to finish up.   They also seemed very pleased that Anna has just finished up physical therapy to strengthen the muscles which help support the TMJs (they even asked for the name of the physical therapy group, because they said they have not often found physical therapists who have experience with TMJ issues).

For the past few years, I have been thinking about Anna's TMJ damage, wondering what to do and wondering about the timing of everything---and praying fervently for guidance and direction, because I didn't have any answers, nor did I have enough medical knowledge to feel that I had a good handle on the issue or ways to deal with it.  I also found myself overthinking the entire thing and intentionally putting it all out of my mind for weeks at a time---and purposely choosing not to worry or fret (not always easy).

Have you ever had a day/week/moment when things and ideas and thoughts all seem to fall into place and you know deep in your heart that this is what needs to happen?  That's how I felt last week during and after the appointment.  Anna did, as well.  After meeting with the Philadelphia doctor, she said that she didn't feel that she needed or wanted major jaw surgery any time soon.  After this appointment with the team of doctors, it's almost as if she's ready to begin the process tomorrow!  We had a choice to use an orthodontist closer to home (Lancaster is an hour away), but Anna instantly said, "No.  I want to do it here."  (We like the orthodontist we've used in the past, but Anna loved the team approach and the fact that these doctors communicate so well with each other---and promised to keep her pediatric rheumatologist informed---we're usually the ones who are telling one doctor what another doctor has said or recommended).  The only aspect that makes me hesitate just a little is the fact that insurance may not cover much of the cost of the medically necessary orthodontics, and they are EXPENSIVE!!!  (The doctors seemed certain that the surgery will be covered, since Anna has a diagnosis of arthritis and significant damage.)  Much more expensive, even, than the "phase 2 cost" which was quoted to us a few years ago from the original, local orthodontist, and at the time I thought that price was rather exorbitant.

So . . . . where do we go from here?  First and foremost, I continue to pray, and I've been in awe of glimpses of God at work in little and big ways in the process so far.  As long as I continue to see Him working and opening doors of information, we continue to walk in this direction.  The orthodontist said that he is willing and able to write to the insurance companies (Anna has primary insurance and secondary insurance through the state, because of her chronic condition)---to explain why the orthodontics are medically necessary.  Anna needs the surgery, and in order to have surgery, she has to have orthodontics.  The billing clerk was less than optimistic but said we could try if the doctor said that he would write letters.  The team of doctors also talked about needing to know that the arthritis in the TMJs have quieted down for the most part.  So at this point, I'm not sure if we will need and want one more MRI before the orthodontics are put in place (once she has all of that metal in her mouth, we will be unable to do MRIs).  That will be up to her rheumatologist to decide and order.

On a less pressing note, the Lancaster doctors told Anna that they couldn't promise to be finished the process before senior pictures (she's entering 10th grade), but possibly before her senior prom.  Anna has already decided (that afternoon) that for senior portraits, she just wants a picture taken for the yearbook, and we can wait for a more extensive photo shoot after the surgery is done and the braces are off, even if it's after graduation.  She said she's been thinking a lot about what she might look like afterwards, but she has no idea (hence, the patchwork picture at the top---unsure of how her face will look once everything is "put back together).  The oral surgeon was studying Anna's face carefully (Anna told me later).  He says that whenever he looks at patients, he sees visions of what they will look like with reconstructive surgery.  He wasn't kidding, and I believe him---he's that sort of person.

Thanks for your continued interest in Anna's JRA Journey.  We are always grateful for your thoughts and prayers as we travel this unfamiliar road, and we are also grateful for the love and support we feel from so many in our local and internet communities.

Saturday, August 03, 2013

Waiting to See Where this Journey Takes Us Next. . . . .

We had an appointment with Anna's pediatric rheumatologist about two weeks ago.  We're still keeping an eye on the TMJs, and the next step is to see a group of doctors at a clinic in Lancaster.  It's actually a "Cleft-Palate Clinic," but Dr. G. has referred several patients with TMJ arthritis issues to this group of doctors.  So it's Anna's turn to be evaluated there.    That appointment is on Tuesday morning.  (So I thought I'd better update my blog now before I have another lengthy update!)  All of the options for addressing Anna's TMJ issues (significant damage to the left side because of past active arthritis) have been swirling around in my mind for quite some time, and it's been like looking at pieces of a puzzle being unsure how they all fit together to form a picture, especially considering other activities and interests in Anna's life.

I was so very grateful to have a few of my swirling questions answered at that appointment.  I wasn't necessarily anxious before the appointment, but I did leave with a real sense of peace.  (So very thankful for that!).  No need for a set schedule for these upcoming possibilities for dealing with the TMJ issues.  If we're looking at surgery, they would probably need to wait a little bit anyway, since they need to be sure she is finished growing.  So her ped. rheum. advised her to enjoy her years of high school, work to audition for District Band (playing bassoon), and don't worry about possible surgery (and subsequent healing) until maybe after graduation.  (Anna will be a sophomore this fall, so we have a little bit of time.)

I had another question about Anna's future (another one that's been swirling around in my head with no real answers).  Our high school requires students to begin thinking about possible future career choices, and three related job shadows are required before graduation.  So Anna has been working to narrow down her passions and areas of interest.  But then I had a question about studying or working abroad---is that possible, and how does it work when she is on a biologic medication (when it's delivered by UPS to our doorstep once each month, and then refrigeration is required)?  Dr. G. had an answer for that, as well!  He's already had at least one patient who has studied abroad, and her medication was delivered to her there.  He did suggest that we stick to Europe or South America, and probably not many parts of Africa or other third-world areas.  If Anna decides to study or work abroad at some point, he will put me in touch with this other patient and parent.

Dr. G. did mention that it's been several years since Anna has had any arthritis flares in her knees.   He said that if it weren't for her eyes (although they've been clear of inflammation for the past year) or her TMJs, no one would ever know she has arthritis.  I know the Anna has a mild case, and because she has such a high pain tolerance, she doesn't present like a vast number of JA children, teens, and young adults.   Did you know that it's very possible to be so very thankful, and yet feel a little guilty at the same time?  I know that's a natural reaction!  I've read similar posts from other JA moms---instead of "survivor's guilt," it's more like "my child's doing so well" guilt, when we know others are suffering.

Anna finished her iontophoresis sessions and her physical therapy sessions.  We were able to do over half of the iotophoresis treatments at home.  The physical therapist was working on some posture issues with Anna---telling us that it would help her TMJs.  She still occasionally does some of the exercises, and she didn't mind the few sessions with Bob the Physical Therapist.  He would wrap her neck with heat for a little bit, stretch her neck and back muscles for a bit to loosen them up, and then do some strengthening exercises.  For the last session, Anna said it was definitely like a workout!

Just a note to anyone who may end up with the prescribed treatment for the TMJs---it's relatively new, and the insurance companies have no clue what it is we're doing, so they aren't into covering the cost of the pads ($10 per pad---2 pads per session---8-10 sessions), and they didn't cover the cost of the medication that I needed to get from the pharmacy for the home treatments (they did cover the cost for the medication delivered to the PT office).  Maybe this will change in time---the ladies at Dr. G.'s office tried explaining everything to the insurance companies, and none of them understood, and refused to cover those costs.

We'll see what Tuesday brings.  We've had other things going on in our extended family that has taken up time and energy, and we've spent a lot of time praying over those issues.  I haven't been focusing on Anna's upcoming appointments, and I haven't been anxious about it at all, so it's not been burdening my heart.  However, there were a few details that needed to be worked out (a referral was required by Anna's secondary insurance, which seemed unusual to me---they've never required one before for any of her Hershey visits).  BUT, this requirement ended up in a conversation with the managed care specialist at our family doctor's office.  That conversation was interesting, because it was one of those God-moments, as she explained several things that happened---extraordinary perfect timing with people being in the right place at the right time because they were exactly the people she needed to talk to, etc.  I have no idea why all of this is necessary, but it all caused me to see how God is going before us---putting various people into just the right place at just the right time to ease the way and take care of some of the details.  And then the managed care person was also warning me that the insurance companies usually drop everything like a hot potato when anything "TMJ" is diagnosed---they won't cover ANY kind of treatment for TMJs.  Curious, because I know that Dr. G has already had several patients go through with this clinic and this procedure, and surely they didn't do it without any insurance!?!  (Maybe there's a different way these doctors code things to show that this is NOT cosmetic treatment, but treatment that affects a person's health and well-being?) I don't know, and I guess we'll get answers on Tuesday.  But as I was reminded (from a recent children's sermon at church, and a song that's been going through my head), we have a God who goes before us---our Rock and our Shield!  In troubled times He will provide, and we will not want.  No matter what Tuesday brings, we will trust.  (I'm also so very thankful that Anna is so mature in so many ways, so not hung up on her looks---but more concerned about her heart and who she is on the inside, and who God wants her to be.)

Such a long blog post!!!  If you have made it to the end, I very much appreciate your interest and your prayers for Anna and for our family.  THANK YOU!