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
Dear 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.
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| Savannah after second set of streoid jaw injections. |
We have some minor jaw issues with my son. The doctor that spoke at the JA Conference in Philly & DC spoke about this treatment. It is supposed to be the only real treatment to touch it.
ReplyDeleteThe DC conference was where I sat in on this session. The doctor said that 83-85% of kids with arthritis start with the jaw. He also said that since jaw issues are silent, most kids don't know that they have a problem until it starts to hurt. By that time there is damage.
The next month my (at the time non-JA) son told me that his jaw was clicking and it hurt.
I am a JA victim and I have been doing some research and came along this blog. OMG! I am so happy I found you guys! I was told I had arthristis in my jaw about 4 months after i was diagnosed and to know that I am not alone helps alot!
DeleteHey there, my son is 14 and was diagnosed only when he was 13. He does have jaw involvement, but currently his TMJ joints are not actively inflamed. We have been told that the jaw injections are to reduce inflammation to decrease the likelihood of more inflammation/damage, so he is really not a candidate. I was of course excited to see your comment about possible bone growth!! Have you seen any improvement? Thanks!! Mollie
ReplyDeleteI need to check on the latest with my JA Mom who has the daughter that had the multiple Remicade injections to the jaw. Last I knew (about a month ago) She was doing her jaw exercises/therapy to reduce the excessive jaw bone growth and that they were hopeful this would take care of it without surgery. They are overall pleased with the results.
DeleteThe doctors saw minor inflammation with my daughter, Savannah's, jaw with both her MRI's. She has had two sets of steroid injections, and so far, all is pretty well. My email address is jennydnelson@hotmail.com if you have any future questions. I get so much out of conversing with other JA moms. It is both emotional and mental support for me.
How is your son doing? -Jenny
Hi! I see that your daughter has had steroid injections to her jaw. My daughter had them done in November and now the side of her face that was injected has atrophied and even her skin and hair has changed, the skin is red and scaly and her hair is brittle around her ear. The oral surgeon is baffled at what has caused it. He is leaning toward a reaction, but her face is now slightly disfigured. I was just wondering if you or anyone else had experienced this.
ReplyDeleteHi, Jennifer. No, I have never heard of anything like this happening. I have talked with several other moms whose children have had this procedure done, too. With your permission, I would like to bring this information to the Oral Surgeon who handles ALL the jaw steroid injections at Birmingham Children's Hospital. Please email me if it is all right I share your comment with him. I will see what I can find out and let you know.
Delete-Jenny
Any help would be great! Lilly is 7 years old and I'm worried about this damage being permanent. The injections helped her arthritis so much but it doesn't look like this will be an option again. Thank you!!
ReplyDeletelillysmama@gmail.com
Let me see what I can find out. I will get back with you.
DeleteJenny
I received one reply about your situation fro a very reputable doctor...though, he did not have much to offer:
Delete"Hello Ms. Nelson, I have not heard of such a reaction.There has been description of subcutaneous atrophy which usually fills in - around a year or so after. It usually does not affect the hair so I would be also baffled, I think. It could be a reaction, sure.
Sorry, not too much help here.
Dr.W "
I am still checking on other information.
Thank you so much! They say that a worried mother does better research than the FBI, I have been researching and found an article about reactions and similair situations. I still just want to know how far this will progress because it has gotten worse in the last week. Thanks again for your help! God brings us mothers together!
ReplyDeleteHi Jenny! We already briefly connected through Facebook, but I'd like to know more about Remicade infusions and bone regrowth in the jaw. My daughter also has jaw involvement and has had the steroid injections. Her jaw doc told us that she would need reconstructive surgery after she goes through puberty. But if we can avoid it I would be thrilled! Thanks for your help!
ReplyDeleteChristine,
DeleteI am passing your comment along to the mom of the child who had this done. Can you please send me your email address to: jennydnelson@hotmail.com
This JIA mom is great, and I will get you some answers.
-Jenny
Hi, My name is Tina my 16yr old son Justin was diagnose with pauciarticular JIAvwhen he was 3. His right knee and right ankle. They did injections and he was fine. We then took him to an Ophthalmologist and discovered he also had it in his eyes. It seemed to have gone into remission after a year in his leg but we continue to struggle with his eyes.
ReplyDeleteHe is going through so much they now think he might have crohns disease and is going in for a colonoscopy and endoscopy on 10/29/14.
While going through all this I was looking at him and thought his Jaw looked very "OFF" like almost distorted. I have now found out its from the JIA. He is going to get an MRI with contrast on Saturday. This is just breaking my heart after all these years I thought he was in remission and now his Jaw looks so bad. The doctors talk about injections but first we need to see if its active arthritis or if the damage is old! Can anyone tell me what do the injections entail? Is it done in the office? Doc mentioned something about surgery if its old another Doctor would do it not him (the Rhuematologist) Sorry I'm Probably rambling I have so much to ask and say forgive me.
thank you
tina
Tina,
DeleteI am sorry it has taken me so long to get you this reply.
First off, Tina, I am so sorry for all you are going through with your son. You are not alone on this journey. As far as the jaw, the juvenile rheumatologists of Children's Hospital Birmingham usually prescribe a set of steroid injections into the jaw...on one or both sides depending on if is only one side effected or both. The medicines our kids take for JIA cannot reach into the jaw area like it can to other parts of the body...hence the need for the steroid injections. Sometimes once is all is needed. In worse cases (which sounds like your son), a second set of injections will be done six months apart. The injections are done as an outpatient procedure...the injection itself only taking a few minutes, the child is put under for this procedure. You are in an out of the office/hospital within a few hours. My child was back at school the next day. The procedure is not done by the rheumatologist, but by an oral surgeon....one your rheumatologist will more than likely recommend.
The MRI with contrast is probably something your son has done before on other joints. It is pretty easy, just uncomfortable to lay still so long.
The injections may be done in the oral surgeon's office or at the hospital as an outpatient procedure...just depends on the set up of the oral surgeon.
I hope this information helps. The two sets of injections my daughter had did help. However, she did not have previous damage...just present inflammation at the time of the procedure. If you have any more questions, feel free to write, again. Mean while, we are all in this together.
Jenny Nelson (Savannah's mom)
I wrote it wrong his colonoscopy is 10/29/13
ReplyDeleteHi ladies I stumbled upon this site as I was trying to find any answers to what decisions to make regarding my child's care. She began complaining of jaw and ear pain about 2 years ago age 12 we thought it was from her allergies something she has struggles with since 6 months old. Our physician referred us to a TMJ guy who gave us a night guard and muscle relaxant. 6 months later it only got worse and wouldn't open a couple fingers apart. I decided to go for a second opinion this TMJ specialist says major damage to the joint soft tissue is almost eroded away and some delayed skeletal growth which he had no answer as to why and suggested replacing the disc and braces and future jaw corrective surgeries. I didn't feel comfortable with not knowing why this was happening so I decided I have her tested for any other joint damage ( trust your mothers instincts ladies) sure enough came back she has arthritis something no one looked for in almost 2 years of suffering. I'm happy I didn't move forward with surgery or give up on answers. Now we have been prescribed a steroid that has helped tremendously with pain and swelling and some movement. Our next step is my biggest fear. I have completely changed her diet (she is 14 can you say junk food!!) lots of fruit veggies fish tart cherry juice fish oil multivitamins the works. I am afraid of methotrexate and the steroid injections because she is allergic to everything!!! So far only joint effected is the jaw. Anyone having success with diet or supplements? Any advice on what works what doesn't. I can use any support or help I can get I am soo lost. If you have a teen daughter who has the same issue she really needs a friend to share her illness with ;)
ReplyDeleteI am so sorry your daughter is going through this, but you are not alone on this journey. My daughter, Savannah, has had jaw injections to both sides of her jaw twice. It helped and she was in and out in a couple of hours.
ReplyDeleteSavannah (age 11) takes Omega 3, L-Glutamine, and probiotics in addition to a multivitamin and Sulfasalazine. The sulfa is taken instead of methotrexate because she has spody arthritis and patients with spondy tend to respond better to sulfasazaline.
Diet change (gluten and dairy free) did not help Savannah's inflamationa and pain, but I know that diet change has helped many other JA kids....everyone responds differently to different things. What may help one, may not help another. But, I am glad you are trying the diet!
As far as allergies to medicines...I would discuss that with your rheumy for sure. It is good she was able to tolerate oral steroids...but, try not to be on them for long term (can have harmful side effects long term). I have a JA mom with a 16 year old daughter with jaw involvement (hers also started in the jaw). I can forward her your email if you like. Just let me know. I hope some of my info. helped. Others....feel free to comment.
-Jenny (Savannah's mom)
Jenny you are the sweetest strongest mom. Thank you I would love for you to give her my email ruchelelv@aol.com and I am keeping your family in my prayers I will be checking in to see how you all are doing and how your beautiful little girl is growing and reaching out to the arthritis community.
DeleteCan I ask if the sulfasalazine has less side effects so far just the jaw joint has been damaged no other signs of arthritis anywhere else fingers crossed it doesn't progress elsewhere so this is why I am having such a hard time using the methotrexate strong medicine to start with. She has been on prednisone for one month and now is being weaned down off it and that is why the doctor wants me to start methotrexate or steroid injections maybe your friend has some advice for me thank you so much. I looked up l glutamine is that helpful with arthritis? Iam going to add gelatin to our daily supplements I've heard is good to rebuild the damage done. Again thank you for your advice.
ReplyDeleteThis comment has been removed by the author.
DeleteI will try my best to answer each question. First, sulfasalazine is a drug that has been around a long time. It was the drug of choice for rheumys before methotrexate. I know of people that have been on sulfasalazine for 60 years and are still going strong...so the long term side effects are known and appear to be minimal. This is a definite plus for sulfasalazine. With that said, the reason the rheumys switched to methotrexate is because it IS stronger and appears to have better results with many JA patients as well as adults with RA. With Savannah, she was on Methotrexate for 1 1/2 years along with biologic infusions. She seems to be doing as well on just the sulfasalazine, now, than when she was on methotrexate and Remicade/Orencia. Again, every cild responds differently. I also know that spondy JA kids (also known as Juvenile Spondyloarthropathy) tend to respond better to the sulfasalazine. It is taken orally twice a day vs. shot in which methotrexate is usually given.
DeleteL-Glutamine: It can be taken to reduce arthritis symptoms and if you are taking anti-inflammatories, L-glutamine can help soothe gastrointestinal irritation....at least this is what I have read and researched.
Predisone can be really helpful to a lot of JA kids, and results are seen quickly...this may be why your daughter is doing so well at the moment. However, long term use can have negative side effects (weight gain, brittle bones, severe mood swings)...so, definitely try to wean her off if you can. Some children have to stay on long term just to function...especially those with systematic JA. The two children I know of that have been on it long term are very delayed on growth (height) and bodies are swollen with increased weight. It is tough...and for these two systematic kids, this is their best option. Always weigh out the pros and cons. I gave my friend your email (Kristi, and her daughter Leyden). I look for her to write you soon, hopefully.
I hope this information has helped! We are all in this together!
Blessings to you,
Jenny
Hello, my daughter is 12 and just had her first round of injections for her jaws.....at children's in Birmingham. Small world that I came across your blog.
ReplyDeleteI hope the injections helped your daughter's jaw. It did help Savannah's, and her last MRI a couple of months ago showed her jaw in good shape. I hope the blog helped you with your journey with juvenile arthritis. Please write if you have any questions or just need encouragement.
DeleteWe are doing her 2nd MRI in May to evaluate. Im glad your daughter is doing well after the 2nd injection. I am assuming our daughters see the same oral surgeon at Kirkland clinic UAB, as he is the only Dr in the birmingham area that deals with jra in the tmj. From what I was told he is only 1 of 2 Doctors in the USA that uses remicade as a joint injection. I am trying to find information on the use of remicade as a joint injection. Have you came across any articles? Glad that we have this as an option if needed, but would like to look into it more.
DeleteNo, I don't know of other articles out there concerning jaw injections and Remicade. I just know things have worked out well for Savannah. Feel free to share if you come across any good articles, though. Knowledge is power. I hope your daughter sees good results with her second set of ijections, too. -Jenny
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteHi,
ReplyDeleteI came across this site in search of answers for my son who has polyarticular JIA. He now has it in his jaw and his doctor wants to do injections. I am concerned because he is not putting him under, as it seems most kids are. He plans to do it in his office using ultrasound. I have heard that this is a painful procedure and he should be put under but my doctor seems to think there is more risk in putting him under and that it is a quick procedure. My son has had both knees and his ankle drained/injected in the office. I would like to know if anyone has ever had this done without anesthesia.
Dear Anonymous, No, I have not heard of jaw injections being done without putting the child under...but, not to say it is not done. An Oral Surgeon does the majority of jaw injections in Birmingham, AL. The Juvenile Rheumatologists all use basically the same one...Dr. Peter D. Waite. The procedure (which my daughter has done twice to both sides) takes only a few minutes and is an outpatient procedure. I hope this information helps.
DeleteTHANK YOU for this website. My son was diagnosed with Oligoarticular JIA, ANA positive, when he was almost 8, and now he's 10. He's on Humira, methotrexate, and Indomethacin, plus a host of other stuff to combat the side effects of the arthritis drugs!
ReplyDeleteThe main joint that was affected in Henry was his big toe, so before we went on methotrexate, we had a steroid injection in the toe, guided by ultrasound. Now it seems his jaw may also be affected, and they are recommending similar steroid injections there. I have to say the stories shared here frighten me! Our doctor hasn't shared any information about facial changes, or bone deterioration. I just thought this was a step to reduce inflammation. What is recovery like after a jaw injection? Henry got some "happy medicine" they called it when he had his toe injected... I imagine it would be the same for his jaw? Sigh.
Again - thanks for this website and I would be very interested to hear about any of your experiences. Best, -Gail in DC (mom of Henry)
Gail,
DeleteI am so glad the blog is helpful to you and others. There is definitely not enough information out there concerning jaw injections...and the ones who have been there are the best source of information in my opinion.
Savannah had very little trouble after both sets of jaw injections...some mild swelling in which an ice pack was applied, and drowsy for a day. That is about it. I will be praying for you and your son and that God leads you on this journey.
Blessings,
Jenny
(Savannah's mom)
Thank you, Jenny - for your insight having been down this road before, and your reminder that all of this is in God's hands... Hard to remember some time, but like you I believe that it is!
ReplyDeleteHenry likes to play soccer like Savannah - isn't it great that they can play at all? Henry was never as sick as your daughter, I know, but because his toes and ankles and knees were affected, we thought it would be out of the question. It was for a while, last spring was hard, but he has been able to play this fall without pain, and for that we're so grateful.
All the best, and thanks again for your blog! -Gail
Gail,
DeleteThank you for sharing about your son...and that he has been able to return to playing soccer. That gives me more hope for Savannah as she begins conditioning soon for soccer (as it is a spring sport in Alabama at our school). We will stay with the motto, "Do the best you can at the pace you can" and pray it will be enough. The coaches know her struggles, but saw how determined and aggressive she was in tryouts. It takes a lot of heart to walk tis journey. Again, thank you for sharing HOPE!!! (: -Jenny