Dr. Sukesh is the new pediatric rheumatologist that joined Dr. Elder and Dr. Modica late this summer at Shands. In September, Dr. Elder and he recommended we increase Jake and Hannah's Actemra, add Methotrexate for Hannah and consider doing joint injections for Jake & Hannah. Well- we agreed to the recommendations, but still didn't see the progress, as we had HOPED to see. Next, we added Toradol for Hannah and added Enbrel back for Hannah (weekly injections). I'm happy to share , we have seen PROGRESS! Hannah is bouncing through the house and not fatiguing nearly as much, joints look much better. Her right knee is still swollen- but she can bend it much better than a month ago. Her fingers and wrists aren't nearly as puffy- however they still hurt daily. Hannah continues to complain a lot about her neck, back,knees, hands and wrists but the pain seems to have decreased! Her labs are better, rashes are fewer and fevers are seldom!! Yea-- now that's a great praise report!! Because we homeschool- she isn't nearly as sick as when she was in a classroom daily even though she's on two biologics (Actemra and Enbrel). Dr. Sukesh shared with me that Shands is the only group who is treating their systemic JRA kids with Actemra and another biologic. There are much more risks involved- but she is being monitored closely! Hannah isn't tolerating Methotrexate very well ( headaches/nauseous/ poor appetite/tired/vomiting). But we have added Zofran and been a little "flexible" with schedule. It was a wonderful "mom-prescribed break" of skipping MTX during the Thanksgiving break. We are trying to get back in the groove. I find it so hard to give Jake and Hannah Methotrexate and then see them the next 2-3 days feel so badly because of the MEDICATION I gave them in hopes that it will help this disease. I have to admit- I am very weak here! Today- we are experiencing the steroid high and tearful moods while being pale, tired, no appetite and nauseous. What a day today has been and on top of that had a very long pediatrician follow up appointment and she was tested by hospital home bound teacher required for upcoming IEP. But at the end of the day, I know we have made progress and I am THRILLED!
Our progress is not just with Hannah, Jake has showed great improvement as well. Jake also had joint injections in both wrists and increased Actemra infusions to the maximum dosage possible. We joke around and say our trip to TN helped our kids feel better. Not sure, but that's when things started to improve. It is so nice to have our Jake back in the evenings without his fevers. Actemra has proven to help reduce his fevers, rashes and improve labs! Fevers do still appear in the late afternoons/ evenings but not as nearly as frequent. Jake continues to have joint pain in most of his joints but the pain level has decreased! He's not nearly as moody and miserable and has tolerance for others much better! Makes the Sloan household much more peaceful! Jake's costochondritis is worse presently. There is nothing more that we know to do.Jake is already on maximum medications to treat pain/inflammation. It's one of those things you just have to wait for it to improve on it's own. . Although- our family has met a great contact through this blog who has offered to help get Jake fitted for a special chest brace to help with his costochondritis. I am exploring options and thinking about a trip to New Jersey-- anything to help ease Jake's daily pain! If you have ever had costochondritis or know much about it......You know it's painful and mimics a heart attack! Right now Jake isn't super conscious about his body.....but I know those days are coming! His chest is very obviously- SWOLLEN and his port sticks out of his skin even seeing the tubing running through his chest! As we celebrate fewer fevers, rashes and better labs......Jake has unfortunately lost more unexpected weight. We are thrilled that he is still growing in height, but he is literally skin and bones. Jake is 91/2 years old and weighs 55 pounds and has slipped down to 21% in weight and 50% in height. He doesn't like that Hannah has passed him in his weight. He continues to deal with frequent diarrhea, abdominal cramps, poor appetite, episodes of throwing up and recent blood in his stool. So.....he will be followed by a pediatric GI to schedule a upper/lower scopes to look for IBD or other related issues in January. Depending upon the outcome, we may have to make medication changes for Jake. Trying not to even think about that-- We finally found the one and only approved drug for Systemic JRA children and it's helping!! We certainly don't want to start all over and go backwards in his treatment.
Our other great news is we have finally found a great, confident, experienced Pediatric Craniomaxillofacial Surgeon for Jake at Arnold Palmer Hospital for children. Dr. Modica recommended Dr. Ruiz and spoke directly to him and confirmed that he was able to treat Jake. We saw Dr. Ruiz last week and came out feeling so relived to find him. I was excited just sitting in the waiting area as I read over his brochure and types of children he treats! Yes- it was printed right there, " Juvenile Rheumatoid Arthritis- Related Jaw Disorders". He was fantastic, thorough and very knowledgeable with JRA/jaw related issues. He has performed many surgeries for children with JRA who had to have rib removed and used for the jaw bone. Jake doesn't need this surgery at this time but explained to us that it is something to be aware of and know the possibility of needing it down the road. We will see him again in January to decide if we want to treat Jake by doing the aristospan injections. I will also be bringing another copy of Jake's jaw MRI. Unfortunately, provider didn't copy jaw MRI adequately for Dr. Ruiz to review. I think we have made the decision to do the Aristospan injections , but deciding on when? His jaws are currently not at his worse, and Dr. Ruiz would rather wait until Jake is at his worse to see the optimal benefits. We are super excited to have finally found a doctor who can treat Jake's jaw issues. For those of you who aren't aware, TMJ can lead to lifelong pain, disability (mouth opening), dysfunction (chewing), and facial dysmorphism. If we can prevent surgeries down the road and ease some pain and improve mouth opening and be able to more foods, I feel this non-invasive injection is worth a try! Yea-- We get to save a trip to Birmingham, Alabama because that was our next stop to find a option to treat Jake's jaw issues.
|Hannah & Jake shared their story. Have you met with your local Congress?|
Merry Christmas to each of you. Hope you are able to "Raise your Hand Against Arthritis" in your community, too.It's going to take your voice to help get more research for better medications and possibly a cure one day! It simply isn't acceptable to live this way- no matter what your age is! Thank you for those of you who have supported our family! Merry Christmas!