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.
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.
- 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.
-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!)
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.