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."

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.

I ask you to pray Savannah can BEAT THE FEAR!!   Anyone else dealing with the fear factor??  If so, you are not alone.

Update on Life with JIA

I haven't posted in several months, so I decided to post an update on Savannah.  Over all, life is good...yes, it is really good! The sulfasalazine seems to be the wonder drug for Savannah.  They have increased her dose to the max for her weight, and though she is not pain free, the pain is very manageable.




You change up dreams on this Juvenile Arthritis journey, and that is okay. Savannah once wanted to be a soccer star, but she now sings in her middle school chorus.  We are taking lemons and making lemonade!  I do not know what is in store in Savannah's life, I just know each day is a gift and we have to make the most of it.



Lastly, Savannah, her father, and I all walked/ran in the Jingle Bell Run for arthritis this month....and Savannah did not use her wheelchair!!  She and her father might have taken some short cuts...and Savannah might have even been carried on her father's back at points (thank goodness for a strong man), but Savannah made it! Thank you for following Savannah's journey.  There is hope on this journey and we hope this blog blesses you in some way.

                                                                   Happy Holidays!!!

                                                            Jenny, Eric, and Savannah

Did you know?? Facts about this kid with Juvenile Arthritis.

Small facts about Savannah (and many kids with Juvenile Arthritis)
that you may not know:

1. Savannah uses an electric toothbrush when her hands really hurt because it has a bigger grip and easier to use when she is hurting.

2. She rarely complains, but instead quietly slips away to see the school nurse to take motrin to help alleviate pain so she can write with a pencil.  The simple act of holding small items (hairbrush, pen, toothbrush, fork) is very hard for someone who has arthritis in their fingers....true for both young and old!

3. First thing every morning (going on five years), Savannah is pushed in a rolling desk chair from her bed to the couch to avoid the pain of standing on her feet when she first wakes up.

4.  Savannah uses a rolling backpack at school (even as a middle schooler).  This really helps many children with JA. (We like PBteen Gear Up Rolling Backpack.)

5.  When Savannah's hands hurt too badly to write anymore, she will tell me (mom) what to write and where to even punctuate on homework.  For these moments, I am "her hands".

6.  Savannah's working motto: "Do the best you can at the pace you can."  Savannah has been one of the last people to turn in classwork and test work in school for years.  Her hands can only write so fast.

Savannah's pencil grip.  These make grasping the pencil less painful for her.
Pencil grip seen above: Ableware Foam Tubing

Arthritic Hands Doesn't Stop His Girl!

Savannah with her school art teacher.

Savannah may have arthritis in both her hands, but she can still produce some incredible artwork!  As a result of her God given talent and perseverance, Savannah won the Art Award at school today! Prayers and medicine has allowed Savannah to return to doing artwork, and we are so thankful.

Thank you for praying for Savannah.

I feel HAPPY!

 "Life doesn't get to be put on pause until you can feel better                                                                        - time keeps ticking and dreams collect dust."

                                                                                        (wise words of a JA friend)

I often tell Savannah that life here on Earth will always have struggles and problems.  It is how we deal these struggles and problems that makes all the difference.  Savannah still struggles with daily pain, especially in her hands and feet, but she chooses to feel happy!  We are thankful for Sulfasalazine that Savannah takes orally twice a day, for it truly helps keep her head above water.

Three years ago, Savannah seemed to always be looking ahead to a time without pain.  She now realizes that this day may never come...and that is okay ...because Savannah has chosen HAPPINESS!

Thoughts of a JIA Mom and JIA Kid

When I started a blog about Savannah's life with JIA (Juvenile Idipathic Arthritis) about two and a half years ago, it was because one of Savannah's teachers challenged me to put Savannah's journey on paper...to share the trials, her everyday journey...both, good and bad, and what has helped along this journey.  I was apprehensive at first,  everything was so, well,  negative.  Savannah could not walk in the mornings because the pain was so intense.  I would have to carry her to the bathroom and then the sofa.  I would have to brush Savannah's teeth and brush her hair because her hands hurt too badly to hold these objects.  I would cry in secret when I would sneak to Savannah's school to view her at recess...only to see all of her friends running as free as the wind and playing games like tag, while she sat on the sidelines and watched or played with small rocks she found on the ground.  I would try to hold back the tears as Savannah would beat her hands against her legs at night and say, "Please, make the pain go away!"  Medicines, oh... so many medicines. Needles being stuck in her, missing the veins, veins collapsing due to being stuck so many times.  Nausea, headaches, sleepless nights, lots of tears.

But now, well, I still have to assist Savannah a little in the mornings, but not so much.  We have found a medicine that truly helps manage the stiffness and pain, with little side effects, and that can be taken orally.  Savannah runs at recess!!!  At night, she still complains of hurting, but without tears. She sleeps fitfully, waking up three to four times at night to stretch because she is so stiff, but she manages sleep.

I am so thankful for the simple things...brushing hair, running, sleeping...things most take for granted.  Savannah told me in the last few days she still hurts everyday, but she rarely complains about it.  So, I too, choose not to complain!  Life is good, life is wonderful!  The wind is blowing, the sunlight dances amongst the leaves in the trees, the sky is blue, and life is truly beautiful! Behind every grey cloud, the sun still shines!

Savannah still wonders if she will ever know life without pain, but she chooses not to dwell on it anymore.  So, today, choose to be happy, to run through the grass barefoot for no reason at all (ok, it might be too cold for that), and notice God's beauty around you.  Blessings to all the people who have taken this journey with us.  There is light at the end of the tunnel!

-Jenny and Savannah