A New Diagnosis…A New Biologic

So much has happened and yet it feels a little like time stands still.   Since Thanksgiving, Parker has been struggling.  Even with his multiple nerve ablations, he still has much lower back pain. In addition, he is incredibly fatigued.  He did repeat MRIs and unfortunately, since March, this darn JA has progressed even more.  He officially received an additional diagnosis in November of Anklyosing Spondylitis (AS).  The doctor is very concerned that while we have been treating his systemic JA, the AS has progressed.  So she started talking about a change in treatment.  Of course, any time there are med changes it is scary.

In the meantime, 2 labs were not too good.  Prograf (anti-organ rejection drug) has been working really well for the past 3 years, but now it is affecting his kidney.  So, we had to stop it.  He is now on otezla and they have seen some kids with psoriatic features do well on this.  So we are giving it a try.  In addition, his immunoglobulins were low, even with the IVIG he gets monthly (infusion of blood plasma).  So they increased the amount.  We are hoping this helps boost his immune system.

Then in December, Parker had blood and mucus in his stools.  And we had an appendicitis scare, that was actually swollen stomach lymph nodes.  This has happened before.  For some reason, the systemic JA tends to attack his lymph nodes.  In addition, the lymph nodes in his neck have been large.  We did an ultra sound and it was confirmed.  There was also concern about his thyroid, but that looked ok on the ultra sound. Endocrine is now running thyroid labs and glucose labs (because those were elevated last round).

So, in early January, Parker saw a GI specialist who immediately did a scope.  The scope came back good with no explanation for the blood.  The only issue was his esophigils were elevated, which may mean that his body is responding to the corn he has been eating.  Allergist cleared him as no longer being allergic to corn, but now those labs have been added to his list of tests.  It might be an intolerance response.  Although inflammatory bowel diseases did not come up on the scope, we are going to keep an eye on this because he is at risk with all his issues.

Finally, we thankfully got approval for the new biologic, cosentyx, which is going to target this AS issues.  We are hoping that it will somehow help his systemic JA as we don’t know if it will or not.  It is an IL-17 drug…for those of you who are wondering.  It looks like he may have to stop Ilaris which has been keeping his systemic internal organ issues with his heart and lungs, fairly quiet.

So all of this has been going on while I had an MS scare.  After 3 docs said I could have MS I went through a series of tests and I don’t.  Thank God!  They believe that I have been experiencing something called Hoshimotos encephalopathy.  In addition, I was on B12 injections from when my Graves disease was active, and now I am in Hoshimotos mode.  My body had too much B12 and that is not good.  Since stopping it, some of my symptoms are much better.  My thyroid has not been nice and neither has my own RA.  So if I have not gotten back to you…all of this is why.  I so apologize.  I am working on removing as much stress as possible for myself and inserting as much JOY as possible for Parker and our family.  Love you all and thank each of you for never giving up on us.

 

Parker wants me to share…

Parker asked me why I haven’t blogged lately.  I told him that now that he is older, it really is his blog and his story and I didn’t want to say things that he may not want shared.  He asked me to please blog and tell everyone what is going on, because he has such a hard time staying awake lately and because it is OUR story…our family’s story.  So here I am, writing, and realizing I have also been avoiding voicing out loud that this life with autoimmune issues has been so very draining on all of us.

I have been going through all kinds of tests due to my own autoimmune issues.  Logan has been flaring for about a month and like me, I think he is trying to avoid more medications.  And Parker seems to conquer one thing, just for another issue (or two or three more) to arise.  Michael and I are realizing we barely have time for much else…we want to work on our house, which has been neglected since this journey has begun.  We want to spend time with friends, but barely have down time.  And the thought of adding holiday decorating to our to-do list is just one more thing to do…and yet, we want to because the result is joy and a reminder that life is precious.

We want to keep celebrating life’s joys, create simple moments with beautiful memories, and keep a focus on what is going right.  And yet, we know, that all of you want to know what is going on with Parker.  And somehow, writing is all down, brings it to the surface.  I realized yesterday, as I spoke to a friend, that I have been trying to smothering it all down inside of me in my efforts to stay as joyful as possible.

I feel like I have lists upon lists…So here it goes…Parker’s “list” of medical needs:

• Parker’s blood labs have been up and down.  Some are decent and some are yo-yoing. 
• His uric acid is high.  He sees a new doc, a nephrologist, next week.  This is doc 18. It is possible that this is due to one of his meds, which we have temporarily stopped and will re-run labs this week.  Or his kidneys are somehow being affected by this mean disease.
• Despite all the things we have tried to do to help his SI joints, they are still bad.  He is having another MRI, at UF Shands, in the near future.
• He is still thinking about continuing the nerve ablations…this is a tough one because he was awake for the last one and it was horrible, but it did help.
• We think he has a leg length discrepancy, so a scan-o-gram is ordered.  His bones will be measured and he may need a lift in his shoe.  Let’s see how that goes since we still can’t get his shoe orthotic inserts, post-surgery, approved.
• He is having blood pressure and temperature issues after showers and doc wants him to go back to cardiologist, which is two hours away.
• We need to remove his port in the near future because he has grown out of it and it is pulling.
• He needs to go back to his regular ophthalmologist because his eyes keep getting really red.
• He has a swollen area on the side of his neck.  So, we have an ultrasound scheduled, since it is near lymph nodes and thyroid.
• Doc is trying to get a new med and a new biologic approved.
• We took him to orthodontist and he needs invisaline and botox injections in his jaw.  Cha-ching…  Doc had others come over and feel his jaw joints because he said they were tighter than anyone’s he has ever felt.
•  We took him to GI doc (actually Michel did…thank you dear God for this man in my life) due to blood in stools and it is likely due to fissures…whew.  Easy solution.
• He is having some pulmonary issues again, so back to pulmonologist and needs to also schedule another sleep study.
• And finally, doc is trying to get him in to NIH with a doc doing genetic studies on kids with multiple autoimmune issues.

Needless to say, this is a lot for a kid to process.  He is doing the best he can with the extreme fatigue in his body.  And for all those people who unknowingly ask about school…to make conversation…oh my word…it breaks my heart every time.  He has various answers for this based on who is asking, but there is always a major pause…The medical stuff seems to consume us. We know and he knows he must get his GED finished, but oh my word, sometimes it just feels like it is the least of our worries.  But he will get there one day.  When it happens we will have a party.

So friends and family, please be patient with us.  We know we don’t connect much and our interactions have been minimal.  We wish we had more time to visit, chat, and go out.  But please also know, you are all in our hearts each and every day.

Do You Know What I Want? What I Really Really Want?

I rarely say what I want…I am more about helping and doing for others.  So, yesterday I was debating on if I should dare to really ask all my friends and family what I really “want”.  As I was thinking about if I should, Michael changed the station on the radio and the music blared out “I’ll tell you what I want, what I really really want…”  I am taking that as a sign.


What I really really want is for the world to know that kids can get arthritis (not like Grandma’s osteoarthritis…you know, the really bad auto inflammatory kind) and I wish there was a public service announcement, so everyone was really aware.  But since there is no PSA…maybe Parker’s PhRma Research and Hope Award video could act as a PSA if everyone got on board and helped it go viral.  He said what many families who are enduring juvenile arthritis want the world to know.  So…what I really really want is for all of you to share with everyone you know this short YouTube video in hopes that it will go viral and JA will finally have a voice. 

Video link:   https://www.youtube.com/watch?feature=share&v=7QEPfzlFwIg&app=desktop

With a grateful heart,

Rochelle (Parker’s mom)

A Day at the Doctor’s Office, by Parker

So we went to the doctor Tuesday and well it didn't go well. First, I saw the doctor and she told me that there isn't one drug out there that will do what we need it to do for me. She said in order for me to feel better, I need to be on two biologics. The preferred ones being Ilaris and Cosentyx. The main problem now is insurance. One, they won't approve more than one biologic for me even if that makes me better. Two, I'm currently on Simponi and the insurance usually won't switch drugs until I get 2 more doses of Simponi.

This creates even more problems. One being that this drug is taken every other month, meaning it would be 4 months before I can stop taking it. Another problem with this is that the Simponi just straight up doesn't work for me. Also my doctor told the two month span between infusions is tough on many kids. She said she could try to get the insurance to move my dosing to once a month so I can be done sooner, but that’s still 2 months before I would stop taking it. So she is likely going to take me off of it all together since my systemic issues are returning and those issues are more dangerous.

I was also told that my SI joints are doing very bad. She said that even if the nerve ablations work and the SI joints don’t hurt, they are very inflamed. Now normally I don’t care what my joints look like as long as they feel good, but this time is different. My nurse told me that if we don’t treat it soon (meaning switch to a med that WORKS) they could be permanently fused and I would walk hunched over for the rest of my life. I know my doctors are doing the best they can but I can’t help but feel hopeless.

We even talked about the NIH (national institute for health) and my doc is willing to try to get me in.  But she felt that because I am such a rare situation and there aren't many like me with these overlapping conditions that there isn't enough of a sample size to do a study.  That was hard to hear.

My doc told me she prefers to take me off the Simponi and fight to get back on Ilaris. Ilaris is an IL-1 blocker and that is what is needed for my systemic issues with fevers, rashes, and internal organs.  However, I really also need a TNF blocker due to my ankylosing spondylitis, which is inflaming my SI joints and causing my back and neck issues.  I just hate insurance right now and I feel hopeless. And I was finally feeling like I was #strongerthanja.

I Did What I Thought was Impossible with Much Gratitude in My Heart...by Parker

On May 7^th 2016 I did what I thought was impossible. I walked the full mile at this year’s Walk To Cure Arthritis. But it wasn’t just me; it was US! Whether you were at the walk or not all of you were there walking with me in spirit. This year our team raised more money than we ever had before; we raised over $27,000. And I couldn’t of done it without each and every one of you. But there are a couple of special people that helped me do the impossible, and those people know who they are. Through out that walk these people stayed with me walking at “Parker speed”. And it was their and all of you guys’ support that got me through that. Thanks, all of you, for supporting me.

Enjoy Pictures and Video Below...

Video Crossing Finish Line

Time Lapse of Entire Walk with GoPro

Speech I Gave About Belle, the Local Youth Honoree

Have Fun Scrolling through Walk Pics

Taking a Leap of Faith, One Step at a Time

Parker is working on a blog post to share with everyone about how he “walked the entire walk” and how thankful we are to all of you…but in the meantime, we wanted to share that he is going through some pretty big stuff right now.  Recently his rheumy shared that she believes that he has an additional overlap disease of ankylosing spondylitis.  As we shared previously, his SI joints are complete inflamed and huge on his MRI.  For the last couple of months, his doc has been trying to get a new biologic shot approved (stelara).  Unfortunately, even with an override request it still wasn’t approved.  So, the next step was to get approval for another biologic (simponi).  The bummer is that this med is an infusion which means we will be traveling back again to the infusion room for treatment. 

Parker is really in some considerable pain from the SI joints, and although we tried the nerve stimulator, it didn’t work and had to be removed.  We are going to stay hopeful that the new biologic will be helpful for his SI joints, along with helping his jaw, shoulders, back, hip, neck, knees, ankles and feet.  But we are seriously taking a huge leap of faith with this new step forward.

The biologic that Parker is currently taking targets his systemic JA issues and this included his rashes, fevers, and internal organs.  This switch is pretty scary for us.  His doc has checked his heart and it is good right now, of course that is our biggest concern.  So concerning that Michael spoke up and asked the doc about it.  And instead of saying “what about his pericardia effusion” he asked “what about his periodic confusion”…I wish you all could have seen her face, the hesitation as she tried to comprehend what he said was hilarious (oh what stress can do to one’s communication)…and she replied, “I don’t know what to do about your periodic confusion, but we can check for pericardia effusion and keep a close eye on him.”  I tell you, there are so many moments that Michael makes me laugh, but boy the moment was priceless…we all started laughing.  And oh how we needed to laugh.

So, as we take this new leap of faith, we will be travelling back to the infusion room starting this week.  Please keep our kiddo in your prayers and thoughts.  Much thanks.

Our Strong Kid is WALKING!

We are a little overdue for an update.  There has just been so much going on.  I finally have a brief moment to share.  We have INCREDIBLE news for those of you who have not heard yet.  Parker's right foot is stable and he doesn't need the fusion surgery on that side too.  Everything that the docs at the other hospital had concerns about were related to his previous reconstructive surgery.  The heal concern was where the surgeon had rebuilt his heal structure and the place they thought was disintegrating was where a pin had been removed and left an open space (still healing).  This is a huge relief to all of us and especially Parker.

Our Jiffy Popcorn head going into surgery.

Also, last Wednesday, Parker had the spinal nerve stimulator trial surgery.  The surgery went well.  Unfortunately, it doesn't seem to be helping his pain, so we will continue onward.   The doc will remove it this week.  We know that Parker is completely disappointed, as he had hoped that this would be his ticket to get off narcotics.  But patience has definitely become a virtue he possesses and is applying once again.  We will continue to hunt for a pain solution.

Working hard at PT.

In the meantime, we are revving up for the big walk.  Parker is planning on "walking the walk"...this is huge.  He has worked so hard to get those feet, ankles, and legs working again.  He is going to stand tall as the National Walk Honoree this year!  His focus and determination has been remarkable to witness.  And we cannot wait to see all of you who can join us on May 7th and walk beside our kiddo.  There is still time to sign up for our team:  Click here to link to our walk page

And thank you to all who have donated to our team!  We are blown away by the support and it is heartwarming to see such love surrounding us.

Finally, we are counting down the days until Logan comes home for the summer.  He has completed his first year at UF and we are so very proud of his accomplishment.  His JA was a little mean to him in the beginning and with a little med adjustment and balancing of physical activity, he has been doing great!   We can't wait to have both our boys home for the summer.

Parker left this little bit of HOPE in my garden to surprise me!