My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Thursday, January 13, 2011

So much not understood.......But we do know it's all a autoimmune disorder!

I often ask myself, "why is there so much not understood about JRA". All that doctor's and scientists know is that it is a autoimmune disease. And just about everything falls under the "autoimmune disease" umbrella. Even though we know there are no right answers, no right treatments and no cure. It is still frustrating that we just don't have so many answers and so often we hear  " because it is a auto immune disease".                            
For family & friends who are following Jake & Hannah. Here's the latest scope with the Sloan Siblings....

Jake and Hannah both had their rheumatologist appointment at Shands on Wednesday, January 12, 2011. Jake IV's (Remicade/Solumedrol/ Zofran/Benedryl) got started very smoothly this morning. He got a higher dosage of Remicade today. We are hoping since this is his fourth infusion of Remicade and giving a higher dosage that this is the month that we will see the difference in Jake.

Jake's current medications include:
Methotrexate .06ml weekly injection
Leucouorin 7.5mg 1x/weekly
Clinoril 150mg 1/2 tablet 2x/daily
Zofran 4mg every 8 hours/prn
Enbrel 25mg 1-3 shots weekly (depending on how he feels)
Tylenol 3 with codeine 120mg 5ml every 8-12 hours/prn
Melatonin 1.5mg 1x/daily
Cyproheptadine 4mg 1/2 tablet 2x/daily

Infusions (every 3-4 weeks):

Zofran/ Benedryl/Toradol

Hannah shares the infusion chair with Jake.  Not sure if Jake enjoyed the company, but Hannah tried to be kind and help her brother in anyway. Next month- Jake & Hannah are both scheduled for Remicade infusions together!!  O my....Is mom ready for that?? I'm hoping Hannah will be brave like Jake , and Hannah's smiles will rub off on Jake.

Jake puts on a fake smile for Mom. Smiles are very few on infusion days!

  During the Christmas break, Jake got the H1N1 flu and was put on Tamiflu for 5 days.  Jake recovered fine from the H1N1 flu then simply wasn't feeling well again. He then had a sinus infection/fevers/ increased joint pain  and started Augmentin XR for 10 days. So it was hard to tell in December if the Remicade is starting to work with his joint pain/inflammation. Typically, a cold or virus will put kids in a JRA flare up and they struggle to fight a common cold.  It's hard to tell what doesn't hurt during these times.

Dr. E gave Jake a prescription for Tylenol 3 for school. When he is not feeling well- he can take Tylenol 3 to help him get through the school day. Hoping Jake's attitude towards school won't ever change- He LOVES school and doesn't ever want to miss school or have to be checked out for any reason! She also gave him new orders for Physical Therapy/Aquatics and Occupational Therapy. He will need bilateral wrist splints. In wearing these wrist splints we hope to decrease chances of joint deformity for Jake in his wrists. Not sure how Jake will handle wearing these new splints.  His first question was, "do I have to wear them to school, because everyone will want to know why I have them on".

We are still searching for a TMJ doctor who actually treats children with JRA and are able to treat by using the aristospan (steroid) injection into the temporomandibular joint (TMJ) . Had another eye opening experience..... Jake went to a new doctor recommended by his dentist and he encouraged Jake to chew gum and thought it was a muscle issue. Yes- he did hear Jake's jaw pop, grind and shift. I walked out of that office wondering who was crazy? Me or the dentist? Another waste of $100, Jake's time out of school and mental distress!!  Dr. E at Shands reassured me that it is arthritis in his jaw causing these problems and not a muscle. So the search is on....again! We may just have to take a trip to Alabama where we know of a doctor who knows what he is treating and does it right!
Not a fun experience!

Hannah..... today was the day we were to hear from her GI doctor about her biopsy results from colonoscopy and EGD she had last Thursday. Still waiting for results & answers- as we sit in the swamp- no results yet! Dr. E wants Hannah on Remicade despite what the biopsy shows (Crohn's or not). So if the biopsy is normal- Hannah will come to the Swamp with her big brother and get her first dose of Remicade on February 9th. If biopsy results are positive- we will stop Enbrel immediately and start Remicade in a few days. Hannah also got Physical and Occupational Therapy orders. Hannah's knees, hands were swollen and especially her fingers on right hand. OT will hopefully determine a good pencil grip to help Hannah and evaluate for other accommodations. Am thankful that Lakeland  {LRMC} has a wonderful rehab center with a therapeutic pool. {Actually 2 pools- one for pediatrics only} It's one of our few appointments that we aren't driving out of town for treatment. surprises or shocking news at the swamp today. I am staying positive that Jake will finally get some relief this month from his Remicade infusion. Hoping to get my happy kid back! The grumps gets very old,  very quickly! Poor Hannah and mom gets the worse of Jake's crankiness! Not looking forward to having both my babies lined up in the infusion room getting Remicade! But if this is the best option we have- I'll give it a try and trust God to protect my children from all the other possible risks involved!
Hannah was amazing- so BRAVE! Not something a 6 year old should ever have to endure!
Thank you to the family and friends who are such a great support to Bobby and I.   I do understand that the bits of information we share with you- may not make sense. No worries- we don't ever understand the entire picture ourselves, and it changes from day to day.  Like I said, "there is so much not understood and the only thing we do know is JRA is a auto immune disease and with that- anything can happen." 
More information about Remicade for those of you who are not familiar with it.


  1. I was so hoping that you would find out some results by today. Is Hannah still having a hard time? I'm hoping that they at least gave her some temporary meds to help the ulcers and such? Is she able to eat a little better?

    They decided to up Emily's Remicade, too. She has far different issues than Jake, but it's worked for her mostly so far. I hope that it works for Jake.. and fast!

    Your poor kids :( God love them!!!

  2. I think of you and your family daily. Thanks for updating us and I really appreciate you sharing the link on remicade...that's a good one. You continue to inspire me and I appreciate that more than words could ever express.

    On a side note, can you share with me how you format these blogs wo that text wraps around text. When I insert pics they seem to have a mind of their own :)