Monday, August 31, 2015

Juvenile Artritis (JIA/JRA) - Jaw Involvement - Helpful Information

To my readers of this blog:

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."


Monday, August 17, 2015

FEAR FACTOR

"Once upon a time, there was a young girl named Savannah who LOVED to play soccer!  She would play five days a week for two teams at the same time when she could. Then, a monster named J.A. (Juvenile Arthritis) came along and swiped the girl's love for soccer away by causing tremendous pain in her feet and ankles.  The girl pretended it did not matter, but the girl's mother knew better. Years later, as the girl approached 7th grade, the girl pondered if she should play soccer again.  But, a new monster named FEAR tormented her."




Yes, Savannah has started the 7th grade and she loves school!  Her pain is still well managed with Sulfasalazine. It has not taken away all the daily pain...but enough.





FEAR is Savannah's greatest enemy right now.  After awakening in the morning, I have pushed Savannah from her bed, to the bathroom, then the couch in a rolling desk chair for going on five years.  I encourage her to get up and walk, but she is FEARful her feet will hurt too badly (morning stiffness) like they did years ago before her diagnosis and medicine.




Savannah has the chance to try out for her school soccer team this year, but FEAR is calling her name...just like it does each morning when she wakes up.