Please bare with me as I address a post that an anonymous reader left. I (mom of Savannah) have been blessed to come in contact and become friends with other JA (Juvenile Arthritis) moms who deal with huge issues of arthritis in the jaw with their children.
Here is the comment I wish to address :
"Hi my daughter also has Polyarticular Juvenile Arthritis. She has had it for about 6 years but only had a diagnosis 18 months ago. She too has it in her jaw but unfortunately as it was not picked up she now has sever damage to her lower jaw joints and her only option to correct this is surgery. She is 15 and is struggling with comments made about her small chin, She is very beautiful but it is a cruel world out there. She has also had Steroid injections in her jaw and other joints and does not like it, she is on Methotrexate. We are in the painful process of trying to make the right decisions about the surgery that lays ahead, this is such an awful disease! i pray for Savannah and hope that you have caught it in time to save her from the painful surgery, keep up with the Steroids and treatment it is worth it if it works" xx signed, Anonymous
I have two JA moms/friends that are dealing with this exact situation. The arthritis in the jaw has caused permanent damage to both JA girls, but they have found other treatments that have worked without the surgery. One has done Remicade injections to her jaw, every 4 weeks, for a total of three or four injections. This "regrew" the bone in the jaw. This is a cutting edge treatment, and still in experimental stages. It actually caused a little too much bone growth, but they are hoping jaw exercises/therapy will correct this without surgery. Also, TWO sets of steroid injections, at least six months apart, are done to the children in Birmingham with much success...though after two sets, if not better, the Remicade shots to the jaw or surgery is next.
Savannah and I will be praying for you and your daughter and the decisions ahead with her jaw.
I hope this information helps "annonymous" and others in the same boat. Savannah and I created this blog to raise awareness, share information, and encourage others.
|Savannah after second set of streoid jaw injections.|