Parker’s Medical Marathon

As we started our week, Parker and I began to joke that we were ready to take on “Parker’s Medical Marathon”….He had 7 medical appointments at Shands UF Health.  Last week was totally exhausting with some good news and some not so good news.  We are processing everything and Parker has a lot more appointments in the future.  The glorious news is there is no tethering on his spinal cord; so there's no urgent surgery needed, and he can go to the JA Conference.   We really needed this small miracle.  He does have some spinal damage (35% curvature with scoliosis), swelling with ligaments/tendons, and herniation in thoracic spine (that was a surprise because he has pain in lower spine and neck, not this area). 

Next steps, we must deal with his scoliosis, the numbness in his limbs, his disfunctioning bladder and his bowel issues (pain in left quadrant and a bit of again).  All these issue could be related.  So the docs collectively feel we need to see the head of pediatric orthopedics, since she is a scoliosis specialist and scoliosis is a pediatric issue.  We have also been referred to neurology and they will team together to try and figure things out.  

In addition, we have scheduled a colonoscopy to see if Parker's motility issues have progressed and to hopefully figure out the source of the lower left belly pain. There are also issues with his bladder/urine...but still need more info.

Rheumatology was an intense visit. His biggest complaints are his neck and shoulders.  He is going to try massage therapy in this area.  His newest biologic shot doesn't seem to be working.  We are giving it 2 more months, but then she doesn't know what to put him on because he has exhausted all the biologics, except one (and not so sure that it will work with what is going on).  They also scheduled an ultrasound of multiple joints.  When scanning his left ankle and foot, there was a gasp...it does not look normal at all and bones could be crumbling; and there is something else going on because it looks like there is blood flow on the ultrasound where blood flow shouldn't be happening.  This could indicate inflammation.  So, now we are scheduling an MRI of that foot and ankle, too.  And then, we discovered his papilledema (swelling behind eyes) is back.  I cannot even begin to tell you how my heart sank in that moment.  His vision is blacking out again with change is positions.  So we go back to neuro-ophthalmology at Bascom Palmer.

His tibia breaks are healing but not fully healed yet.  He is pretty ticked off that the doc is making him use the wheelchair at conference, to get to and from locations, but then he can get up and walk, no more than 1,000 steps this week and then 2,000 next.  Each week he can add 1,000, until he hits 5,000, when we go back to doc.  He will start PT in 2 weeks.  He is excited about getting back to PT and hopefully ditching the wheelchair.

We are all trying hard to focus on the good...that his spinal cord is ok...but Parker and I are really exhausted and feel so defeated with all the other news.  We know that Parker’s Medical Marathon is not done and we are pacing ourselves.  I guess this is why they call it “chronic illness”.  This morning I saw a quote that spoke to me…”The only impossible journey is the one you never begin.”  This journey has been really difficult this summer. Although the path is not one we would have chosen, we are hopeful it is taking us where we need to go.

Happy JA Awareness Month

 

Juvenile Arthritis Awareness month has officially begun…The years seem to loop back around quickly and I feel a little bit like a broken record; but we desperately need a cure.  We have been a little quiet lately, not knowing what the future holds, trying to make big decisions, and wishing there was really big progress around the corner.  Parker has been in, what feels like, a holding pattern.  Every month, when we refill his cosentyx (now on for nearly 6 months), they ask if symptoms are improving, getting worse, or staying the same…I say staying the same.  They say great.  And then I say but same is not great…it doesn’t seem to have helped him yet.  He is also on Rasuvo (auto inject methotrexate)…but that darn med makes his leg go numb, so we don’t know how much longer he is going to use it.  Docs, nurses, and pharmacists all say that is not one of the side effects…I beg to differ because, at least for Parker, it is. (And by the way, he tried the other auto inject of otrexup and the numbness was even worse).

I am a little more worried these days, wondering what the internal organs are doing.  He has had many issues since my last blog post.  Gastrointestinal issues (possible crohns, but meds might be masking it), Kidney stone that had to be blasted out, many flares with fevers and rashes, the never ending battle of pain, adrenal crisis twice, possible dysautonomia flares, and the need for a re-do on this right foot/ankle/tibia.  He now has surgery scheduled for August 28.  The surgeon will be fusing that foot like his left, with 3 bolts.

Through it all, Parker fights with his driven spirit and is balancing these not-so-fun medical issues with real fun.  He is part of a large campaign that will launch later this month (yes, that’s a little teaser); he was selected to be a “Leader in Training” (LIT) at Camp Boggy Creek for cancer week; and he is gearing up for his first year at the JA Conference as a “young adult”…Yes folks, he is turning 18 on August 5.  I still can’t believe my kids are now both adults.

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.

 

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.