World Autoimmune Arthritis Day is coming!

Are you looking for more information on forms of Autoimmune Arthritis?  Are you wondering what the heck it is?  Are you or a loved one affected?  Well, if so, you have found this post at the right time!  www.worldautoimmunearthritisday.org is hosting this FREE event for a total of 47 hours so that it will span across the world!  It's coming your way on May 20!  If you would like to register click here to head over to the registration page.

I'm changing my format a bit tonight.  This post is intended to be a "take away" from this event.  This is to go along with my presentation.  I will be speaking about how to cope with having a child with autoimmune arthritis.  I touch briefly on what juvenile autoimmune arthritis is, some things to watch out for, how to find a doctor... that type of thing.

There are some things that I have found important that I did not cover in my presentation, and one that I just can't stress enough.  Having one autoimmune disease opens a person up to developing more.  I was so blind at first with my daughter.  I truly think that she had JA from a very, very young age, but we didn't figure out what it was until she was 5.  It took months to get into a pediatric rheumatologist, and another year for her to start to feel good.  Once she was on the right medicine combination she did so well that many days it was almost like she wasn't ill.  I naively thought "my child will never flare.  We're past that now."  I have since learned through making friends with a few hundred parents of JA children that most kids don't outgrow this.  I'm sure that there are some, but not many.  Eventually medicines will stop working.  You will be on a quest to find a new medicine.  That is terribly frightening... making decisions that may alter your child's health.  You look at the warnings and you are terrified.  Such decisions have to be weighed carefully.  Do I let him or her suffer and risk more severe damage or try something that may cause other problems?

Hopefully your child will be a "simple" case.  Maybe a nice oligo (less than 4 joints) with no eye problems.  However, JA can look like simple arthritis but actually just be the first signs of other diseases.  In my case, my daughter has Mixed Connective Tissue Disease.  It started with the arthritis but within about six months of treatment we noticed that she started turning blue.  Yes- blue.  The pictures below are actually a Raynaud's Phenomenon episode.  The blood vessels overreact to the cold.  True Raynaud's has a 3 phase color show.  Blue as the hands start to get really cold, white as the blood stops flowing and red as the blood starts flowing again.  Raynaud's can be its own disease but it is actually worse as a secondary.  It is associated with MCTD, Lupus and Scleroderma.   It takes almost nothing to trigger a flare.  My daughter developed frostbite inside of the school cafeteria!  That's when you start to make life-altering changes.  She wasn't allowed to wear shorts or skirts, she had to keep jackets, mittens and hand warmers with her at all times and she had to wear 2 undershirts under her clothes until she was finally started on medicine for it.

We had a very hard time researching MCTD.  It is basically overlap.  There is a long list of symptoms that it can include, and every affected person has a slightly different case.  What did we learn from this?  With an autoimmune disease, crazy things can happen.   Weird rashes can be a sign of an unrecognized disease.  The blue hands can mean Raynaud's.  Watch your child carefully, chart pain, stiffness, and any unusual symptoms.  My favorite thing to do is take pictures!  Yes, I have taken pictures of just about every strange occurance that we've had.  Maybe your doctor won't see how big your child's knee can swell in person, but they have to appreciate the picture!  And bring up anything that seems unusual to you.  Sometimes it's the little things that don't make any sense that can change a diagnosis.  For instance, pain in the heels or toes can be attributed to Spondyilitis. 

They say that usually siblings don't get diagnosed but I personally believe that their figures are flawed.  I am on several JA boards and between those and my couple hundred parents on my Facebook, we see many siblings becoming affected.  I would try hard not to get paranoid but always be on the lookout for symptoms.

As for helpful hints, these are some things that we do.

-For injections, ask your doctor to prescribe numbing cream.  This numbs the area so your child doesn’t feel the sting.  This has been a miracle for us.  You may try to use it for lab work also, but it can make the veins roll or "hide".

-Welts or itching after injections: always consult doctor but often a small dose of allergy medicine will help lessen the itch.  My kids like to use ice after an injection, also.  We make sure to warm the medicine up with body heat first before injecting, but have an ice pack nearby for after.

-A heated mattress pad can take away much of the morning stiffness.  This can be used year-round.  This was another huge miracle for us.  (NOTE: Do not sleep with a heating pad for safety purposes.) 

-A heating pad will help a lot, but if you can’t take one with you, make a sock filled with rice.  This can be heated in the microwave for a minute and placed in lieu of a heating pad.  There are also small hand warming pads that are disposable that can be used as a heating pad.  They don't get as hot but they are much more portable!

-A nice hot bath can do wonders for stiffness and pain.  There are some bath additives out there labeled to help with pain!

- We had a friend that told us about magnet therapy.  Emily swears by magnet therapy.  She always keeps an anklet with magnets on for her ankle and knee.  She swears that it works.  I couldn't tell you how, but she's convinced.

-Peppermint can help with nausea

-Sleep disturbances- We haven't really figured out anything good for this yet.  Emily does pretty well just settling herself back down now.  In the past before she was on a prescribed NSAID (non- steroidal anti-inflammatory) we used to give her a little pain relief on the bad nights.

-Relaxing the jaw-  We only just started dealing with jaw issues in the past few months.  Thankfully, so far so good with that.  I was told in the Juvenile Arthritis Conference session on jaw JA that up to 83% of the kids actually have jaw arthritis but it's silent (painless) until it becomes very bad.  I was extremely grateful to hear that, because when my son told me two months later that his jaw hurt, I got the ball rolling!  (He currently has the Juvenile Psoriatic Arthritis diagnosis.) 

-Research everything as much as you can!!!  Knowledge is power, and the more you know that more of a help you can be to your child.  The doctors are human- they will not always be correct.  Doing your own research can make your family less of a victim and more empowered.  

-Get copies of any tests and add them to a thumb drive or disk.  This makes it easier if you are hospitalized or if you have to see another doctor.  Also, look over your labwork reports.  Just because a doctor orders blood work to be done doesn't mean that they are seeing it!  If you see something that doesn't look right, bring it up to your doctor.  

-Talk to your child, and tell them as much as you can to help them to understand what is happening to them.  Put yourself in their position.  If you were 5, 10, 15 and just starting to go through something like arthritis, how scared would you be?  They need to understand some of what is happening.  Also, help them to know what medicines they are taking.  If they are hospitalized and you are not in the room when they get their meds, they may be over or under medicated.  (Yes, that has happened to us, but thankfully Emily knows what to take and she stopped it!)

-Your child should be pretty free to do whatever sport he or she would like to do as long as they can.  If it hurts they should stop or slow down, but moving the joints will help to lubricate them.  They should be free to set their own limits within reason.

-If your child has arthritis in the hands have them take little tiny toys (like the kind you find in gumball machines) in their pockets to play with all day. Play Doh and squishy balls are also good for hand exercises.

-If they can stand the heat, get a paraffin bath.   That can really help the hands a lot.  

 And if you have any questions that I haven't covered, please feel free to ask them!  Here are some links that I have used to get better information.

The Arthritis Foundation's Juvenile Arthritis page 

American College of Rheumatology 

Spondylitis Association of America 

Childhood Arthritis & Rheumatology Research Alliance 

Raynauds Association 

National Heart, Lung and Blood Institute (Raynaud's explanation) 

Kidz Occupational Therapy.com 

Kids Health from Nemours 

Cincinnati Childrens page for Lupus