My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Saturday, February 12, 2011

A Visual Reminder About "Aurthur"

The past two weeks Jake and Hannah have been asked repetitively, "why are you wearing splints"?  I think they have had mixed emotions about wearing their splints.  Initially, it was kinda cool and they could take it on and off, as desired.  But within a few days it became uncool to have splints and only a visual reminder about "Mr. Aurthur". They have talked about and rehearsed as to what they'll tell their friends.  I have done my best to encourage them to tell the truth--- "tell them you have arthritis and this splint is to help with my pain".  Many adults have even questioned me about why Jake and Hannah both are wearing splints with arthritis.  What people may not understand is that splints help keep joints in the correct position and relieve pain.  When Jake and Hannah's joint is becoming deformed (bent in the wrong position) or it is at risk for it, a splint may help position or stretch the joint gradually back to its normal position or try to keep it in a normal position. 

Hannah wearing her wrist splint & ring finger splints
Jake thought it was neat how his splint was costumed made

Jake sporting his day time splints.
Not as comfy as they look!
Night Splints
This month Jake and Hannah both got splints. Jake got 5 new splints, which include bilateral wrist splints for day time usage, and bilateral wrist splints for night usage and a left foot splint.  Hannah got a right wrist splint and ring splints for her two fingers on her right hand. 

Not sure how compliant kids have been wearing their splints as ordered by their rheumatologist.  Jake is now asking "can he wear just one splint at night or can he skip it tonight?"  Hannah has lost a ring splint from last week's dance class.  I have already heard the many excuses as to why they don't want to wear their splints.   Some of these complaints include: it's uncomfortable, sweaty, hot, can't write with them, can't drink with them, can't wash hands with them, the fastners get hooked on clothing, it hurts more.  The biggest complaint is the appearance of the splint generates many comments from people (friends and adults).
This makes Jake and Hannah  feel different from others! 

Another Attempt To Stop" Mr. Aurthur"

 The "Sloan Siblings" did it!  They both got their Remicade together at Shands on February 9th.  I have to admit, I was anxious about having Jake & Hannah both getting their IV's together and trying to figure out how to split myself in half and be there equally for both of them.  They both did great-- I even left them in the infusion room for a Wendy's french fry run. 

As Hannah begins her start of Remicade treatment today. We find out that Jake will be stopping Remicade after today and moving on to another treatment option.   Trying to be hopeful that Remicade will be successful for Hannah without side effects.  Dr. M tried to encourage me to try not to compare Jake and Hannah and be hopeful  for Hannah's treatment.  Jake has failed two out of the three Biologic medications (Enbrel and Remicade).  So the next step is Orencia (abatacept). Orencia is saved to use with patient's who fail TNF medications.  Orencia  has not been on the market for very long and has limited effects of the medication available.  And what I do know from other children's experiences- it SCARES me!  Orencia is not a TNF blocker as Enbrel, Remicade and Humira is. It is a T-cell co-stimulation modulator ( T cells play a prominent role in inflammation).  It blocks the signal in the blood that is necessary for T-cells to do their damage.  I'm not thrilled about putting Jake on Orencia but we don't have many options.  The good news is that Jake can stop taking Enbrel shots and Orencia is a much faster IV medication. He is happy to have 3 less shots a week. He'd like to get rid of Methotrexate shot- but no luck with that! We'll still have to make the drive to Shands for infusions- but less time in the infusion room for Jake. 

Jake's quite as he awaits for the day to finish!

Overall, Jake has not made any improvement and has immune system is simply not fighting any simple infections. His SED Rate has doubled in the past 4 weeks and his joints are inflamed and hot head to toes!    We are discontinuing  Jake's Clinoril because of increased abdominal pain. We will add Celebrex (100mg -2x daily) and Prevacid (30mg-1x daily). Jake currently gets physical therapy, occupational therapy and aquatics each once a week.  He has got 5 new splints in the past month ( left foot splint, bilateral wrist splints).   We have invested a TENS unit and para-fan wax machine for home use. He continues to do his best to go to school most everyday- but that is about it for the day. Fevers are getting common for Jake in the late afternoon and evenings.  We struggle to keep up with homework, studying, therapy, and doing the basics that need to be done.  It doesn't help that Jake is getting sick often and then always seems to get a post-sinus infections. Dr. M also discussed that Jake and Hannah are also hypermobile.   She emphasized the concern of them both doing too much at school (carrying backpacks, playground- free time, PE class) and then having increased joint pain later in the day.  Because Jake and Hannah have excessive joint laxity it can easily lead to wear and tear to the joint surfaces and strains or fatigues the soft tissue surrounding these joints.   We are trying to focus on a lifestyle modification, altering our exercise regimen, protecting our joints better and proper body mechanics.  Dr. M is working on a letter for LCS to explain their JRA a bit more and some other considerations for Jake and Hannah to be more successful at school.  As always......things never stay the same with battling an auto immune disease.  So back at the Swamp in 2 weeks for Jake's first Orencia infusion. 

So......I had one child receiving his last Remicade infusion while my other child gets her first Remicade infusion.  Staying hopeful and positive that Remicade will be successful for Hannah.
Hannah was a big girl and luckily didn't have any infusion reactions today!  She did have big tears as the nurses tried to get her IV's started - but after a few minutes she was fine.  A very nice lady  in the infusion room came over to talk with Hannah( while I helped Jake get his other IV pre-med's) and got her mind re-directed.  She was a bit mad at me for a few minutes, even put her blanket over her head. She simply didn't want her IV and I don't blame her! This is not the way a 6 and 8 year old should spend their days!  Within a few minutes of adjusting - she came out from under her blanket and was fine!  It helped having our friend (Gavin) and his mom there next to us!  Gavin even made us laugh. He says to Hannah, " where is your boyfriend, Hannah".  {Gavin was talking about Jake} Love it when kids say the funniest things and we needed a good laugh! Thanks, Gavin!

Hannah also got the good news of stopping her Enbrel shot, too.  Yes-- that is 6 less shots in the Sloan house a week!! Yea--  we are all very happy about that!  Not happy that Enbrel failed, but happy to stop  Jake & Hannah's Enbrel shots.  Dr. M was not pleased with Hannah's swelling and limited range of motion in her hands (wrists, fingers) and noticed a lot of fluid in her right knee and heard clicking in her jaw.   Hannah's worse complaints are always her TUMMY, knees, hands, and NECK!  Hannah is also in physical therapy, occupational therapy and aquatics each once a week.  She  wears a splint for her right wrist and has ring splints for her fingers.  We are hoping that Remicade does it's job to help Hannah feel better not only in her joints but also her "TUMMY".   We are pleased to rule out Crohn's (for now) but am frustrated to not understand exactly what is causing Hannah significant abdominal pain.  Hannah's GI doctor just put her on Levsin (125mg) to help with tummy pain.  So Hannah will also be returning to the Swamp in 2 weeks for her next Remicade infusion.  I was told if Hannah fails Remicade- the next step is Anakinra (Kineret).  I do NOT want this for Hannah-- DAILY shots that HURT!

Jake & Hannah did it! Now if these medications would just help my children to simply feel better!
We will continue to do our best and do everything we know what to do and pray for good outcomes as Jake and Hannah both start a new treatment in battling their JRA.  A special thank you to my parents and those friends who have been a support for Bobby and I.  I trust God will touch Jake and Hannah one day and this will be just a chapter in their lives!