One of the things I am contacted most about is information on jaw involvement with Juvenile Arthritis. Let's face it, there is not a lot of information out there. After one of my readers contacted me seeking more information, I looked to a couple of my fellow JIA moms for wisdom. The following is from a mom who has a daughter with extreme jaw involvement. Dr. Cron and Dr. Waite, mentioned in her writings, are located in Birmingham, AL. They are believed to be some of the experts of this field. I asked permission to share my friend's information in hoping it might help another family looking for any information concerning inflammation in the jaw with JIA. My prayer is that it helps someone. -Jenny Nelson
"My 17-year-old daughter was diagnosed at 14 with TMJ involvement, and Dr. Cron is her pediatric rheumatologist. She has had three aristospan (steroid) injections in her left side, and one aristospan injection in her right side. The injections helped, but the pain, inflammation and deterioration always return at some point.
Dr. Cron sent us to Dr. Waite for Remicade injections after my daughter's last MRI. Because my daughter has had several friends who had negative results from Remicade injections, she told Dr. Waite that she was not comfortable with that option at this time. Dr. Waite understood, and in fact, said he wouldn't suggest Remicade injections just yet because she is able to eat and the pain in her jaw is manageable. He recommended not doing anything at all until she has significant pain and/or is unable to open and close her jaw. When she gets to that point, he said he would do a procedure to "clean out" the joint, which he has found to be helpful in a lot of patients. He told her that she has several options besides Remicade, and that he is willing to work through those options with her.
I see that you mentioned that the latest results of this procedure do not match the positive/potential beneficial outcomes that were portrayed in 2013. It is my understanding that injecting Remicade into the TMJ began as an experimental treatment, and as such, the long-term effects of this treatment were unknown. Of course, every patient is different, and every patient reacts differently to medications, so some people have had positive results, while some have had negative results. If you have any doubts at all about the Remicade injections, I would suggest that you discuss them with Dr. Waite. He is very open-minded and willing to listen to your concerns and answer your questions."
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I have been reading your blog and see some of the same things in my son. He has had his diagnosis for a year now. He is 11 with spondyloarthritis. We have already been on two biologics. He has had his first steroid injection in his jaw back in March. On Tuesday he had to get his first injection into his knee. We are struggling right now with pain and how to feel better. I feel at such a loss of what to do next. He has missed a lot of school due to the pain and swelling lately and it feels as though there is no end. I am so thankful we found your blog its great to see that we are not the only ones that have had to go through this. We are also from Alabama.
ReplyDeleteCrystal,
ReplyDeleteI am sorry to hear your son is having a tough time of it right now. It is a difficult journey, with potholes along the way. Please let him know he is not alone on this journey and I will be praying for him. May I make a suggestion...though feel free to take it or leave it. Encourage him to go to school with pain and swelling and all. Here is how my daughter and I look at it. She can sit on the couch in pain, or she can be at her desk at school with pain. Savannah admits that going to school was tough on those days, but the distraction from the pain with having to do schoolwork was good...forced her to concentrate on something other than the pain. Plus, Savannah easily got behind with her school work due to the arthritis in her hands and writing slower because of it. Missing school just compounded this. So, I would give her naproxen, carry her into school if I had to, and she pushed through. Our motto is, "Do the best you can at the pace you can." She is much stronger now because of this choice we made early on. However, you know your child best and what they can handle. I use to tell Savannah...if you stayed home every time you hurt you never would go to school. (: She would not admit it then, but now (at age 13) she is so glad I encouraged her to go. I will be praying for your boy.
Blessings,
Jenny, Savannah's mom
Hi ,this amazing article i am reading blog and i am researching this information and i got some information.
ReplyDeleteHi. I was diagnosed with juvenile polyarticular arthritis when I was 13 years old. Now I'm 18 years old. Arthritis is almost in all of my joints: wrists, elbows, shoulders, ankles, knees, hips and in JAW. I'm also diagnosed with TMJ dysfunction. I've tried a lot of medications but most of them failed: sulfasalazine, methotrexate, leflunomide, enbrel. Now I get Remicade infusions but this medication don't work at all. Next medication will be Actemra... I hope it will be work.
ReplyDeleteI saw Savannah's video on youtube and now find this blog. Thank you for the information.
P.s. sorry, there can be some mistakes because english is not my first language (I'm from Europe).