Two Kids. SAME Diagnosis.

"Are you sure??"

(Deep breaths)

"Two kids? BOTH with arthritis?"

(Deep breaths)

"How can this be? How did this happen to BOTH of my babies?"

(Deep breaths)

We took JJ in to see Mia's rheumatologist yesterday afternoon and, after he examined him and checked the ultrasound results, he confirmed that JJ has juvenile rheumatoid arthritis.

I am in shock. Complete shock. And, for the second time in the last four years, time stood still for me as I listened to the doctor's report...

Your heart breaks when the nurse holds up a piece of paper with a series of smiley faces to sad faces (series of 1-10) on it and asks your child, "When you are in pain in your knee, which face are you?" And, when your child immediately points to the saddest face (10) on the page you feel just awful. No child should have pain in their body and be that sad. No child should get an old person's disease. No child should be diagnosed with arthritis at 3 (almost 4) years old.

Dr. Lopez took a look at his joints and could see what the PT saw last week - an enlarged left knee. I did not tell him what Mary (PT) saw because I wanted to see if he saw the same thing. He did. He also thought the right knee had some fluid on it, but the ultrasound showed that the fluid was all on the left. When he raised JJ's left hand up to touch his left shoulder, JJ yelled and quickly pulled his arm away. So, he asked him if that bothered him and JJ said, "Yes!" He tested the right arm and did the same thing - right hand to right shoulder. No pain on the right. Just pain on the left. So, he checked the left again and JJ had the same response (this time with a bit of anger because he did not understand why the doctor kept hurting him.) The doctor then apologized and told him he would not do that again.

"So, what is the plan? What do we do to alleviate the pain?"
(more deep breaths)

Dr. Lopez is starting him on Naproxen (5mls, 2x a day). He also wants him to get his eyes checked for uveitis. He sent JJ to the lab for blood work to check to see if he is ANA positive and to check to see if he has the HLA-B27 antigen in his body. He wants him to hold off on PT for now and wants to see him in four weeks.

He did say that while it is possible to have more than one child in a family with arthritis, it is rare. There are nearly 300,000 children in the United States have some sort of arthritis. A study done in 2002 showed that of those 300,00 children, only 300 of them are siblings with arthritis. He also told me that at some point he wants us to have James tested, as well.

So, we are researching, digging deep and looking into how this could have happened. It is not so much as "How did they both get arthritis?" as it is "Why are both of their immune systems compromised??" JRA is an autoimmune disorder. We have to remember this. I have to remember this. There is something deeper going on than what we see on the outside. The inflamed joints are a result of the immune system attacking itself.

Time to go back to the beginning and look at everything...with both kids. Time to pray and pray hard! Time to ask God again, "Lord, show me what it is! All hidden things revealed!" Time to give extra hugs and extra kisses. Time for extra understanding when they are miserable and crabby because it might be something more than just "being moody." Time to fight, once again.


In other news...better news...

Mia got a GOOD report yesterday. This is the second time since her initial diagnosis that Dr. Lopez has said, "I don't see any arthritis in her body." He wants her to continue taking Indocin (3mls, 2x a day) for the next three months and then he wants her to come back in to see how she is doing. If all remains the same, we we attempt to wean her off of meds again. This will be our second attempt at getting her off of meds.

He said he does want her to start back up with PT, though. Because the arthritis' damage to her joints, she now needs to have those joints and muscles around the joints strengthened. The good news is our insurance company JUST sent me in letter in the mail two days ago saying they will cover her again. YES!!

Diet decisions:
We are putting both kids on a GF, DF diet. Mia already eats that way, but we have let a few things slide here and there because she has been doing so well. But, right now is not the time to slip up with anything. We will be slowly putting JJ onto the diet, as well. We saw immediate results with Mia after her initial diagnosis when she was 22 months old - within a month her sed rate dropped from 60 to below 20. And, both kids will be taking cod liver oil (1 tsp, 1x a day) to help reduce inflammation in the body and lubricate the joints to protect them.

I will be back to updating this blog more often as it is one of the only ways for me to "dump" everything out of my head and "journal" it to look back on when things occurred. I ask that you pray and agree with us for our children and for our family for complete health and wholeness to their bodies. God perfects those things that concern us, especially when it concerns our children.

Thank you so much to everyone for your love and prayers yesterday. We love each and every one of you and thank God for you! And, a huge "thank you" to all of my arthritis friends who were so very encouraging yesterday with your prayers and support and kind words. We are all in this together. And, I am holding tightly onto hope that, one day, will WILL get to the bottom of this!