We finally got Darah in to see the rheumatologist to confirm what other specialists have told us she likely has. We LOVED the rheumatologist we saw and she is totally worth the 3 hour drives to see her during this early stage of figuring everything out. We will likely switch to someone closer once we have our clear game plan. There was a lot of good news from this appointment, in that we now have a diagnosis and a treatment plan and Darah's quality of life should drastically improve now that we are beginning treatment. Of course, we are devastated beyond words that she has yet another medical battle ahead of her. Darah has Psoriatic Juvenile Idiopathic Arthritis (PsJIA). Darah has had psoriasis for many years. It's never been crazy out of control, but she has always had patches on her elbows and knees and some areas on her feet that have been scaly. No big deal. We've counted our blessings that her psoriasis has never bothered her and it's never flared or spread to the point where we felt she needed medical attention for it. Apparently, what we did not know is that some people with psoriasis go on to develop arthritis. Typically, though, this happens in people in their middle adult years. Because of her psoriasis, her bloodwork (specifically her ANA), her inflamed joints (which include more than the masses on her hands that we knew about), her loss of mobility in her hands, her incredibly short stature (she's barely on the Down syndrome growth chart for height and is below the 5th% for weight with a very tall mommy and daddy and family), her "sausage digits" (yes, the term I don't know if I'm a fan of often used to describe fingers like hers), and several other factors, it was a pretty cut-and-dry diagnosis. That is wonderful news. It has been two months of uncertainty surrounding these masses on her hands, and a conclusive diagnosis is freeing in so many ways. Although, the more I learn about JIA, the more I learn that it is a very very serious disease. I feel horrible that I have always looked at arthritis as an inconvenience and discomfort, without realizing all that goes into the treatment, the severity of the pain, and the huge decrease in quality of life it can bring with it. I certainly had no idea about the dangers of this disease, either. We were at one point so thankful it wasn't cancer, but to be honest, this isn't all that much better than a cancer diagnosis. JIA is incurable and the goal is pain relief, decreased flares and swelling, and hopefully, remission. Debbie Downer rant over. The wonderful part of all of this, is that we will hopefully be able to increase Darah's quality of life with this treatment. We had no idea that Darah has lived in a constant state of pain for much of her life. What we have thought was a high pain tolerance, was actually because she is almost always in pain. What we have thought was low muscle tone with gross and fine motor tasks has actually been low muscle tone AND pain. What we have thought was an introverted/observer personality has actually been a little bit of personality combined with pain. Even though this is a diagnosis we are devastated about, we are eager that her quality of life will drastically improve as we begin more treatment and manage pain we had no idea existed!! We are already seeing dramatic changes in her personality and her activity levels as she has begun her first stage of treatment.
Her first line of treatment is called a NSAID. We began this medication about a month ago. It has completely helped with pain, but hasn't done anything in regards to her swelling or her masses. Her swelling is pretty severe and her masses continue to grow. The inflammation she has right now has limited her mobility in her fingers and hands quite a bit. Which leads to an additional treatment of joint injections, which she will have in the next couple of weeks. They are going to inject corticosteroids directly into her joints severely affected to hopefully help all of the inflammation and hopefully restore some loss of mobility. From there, we will see what happens. Our doctor prepared us that we will likely begin a medication called Enbrel in a couple of months. This medication is an injection we will have to regularly give her at home. I've cried a few tears over this part. This is a pretty serious drug because it acts by suppressing the immune system. PsJIA is an autoimmune disorder in which her body is basically attacking itself. By suppressing the immune system, Enbrel will hopefully stop the immune response that is causing the arthritis and psoriasis. There are some very-big-deal risks of this medication. I've cried some tears over this part, too. All of this treatment is trickier because she has Down syndrome. Some of the other medications which are typically used before Enbrel are not safe for her because it increases her chances of having leukemia. Kids with Down syndrome carry a higher risk of leukemia as it is, so we don't want to trigger that. Enbrel carries cancer risks, as well. But, we are hopeful that this treatment plan, in combination with some food changes we will be making for her will help her to reach remission quickly. She will have another MRI done the day she does her joint injections which will tell us the extent of swelling in other joints in her body.
So, if we're honest, this is a horrible nightmare. I can put up with so much, but I have a lot of difficulty when it comes to any of my four children having to go through hard stuff. I am terrified of having to give her injections without the ability to communicate to her that they are to make her better. I am so upset she doesn't have speech to communicate with me her level of discomfort. I'm allowing myself to have momentary pity parties, but I'm trying to quickly focus on all that God has blessed our sweet family with. He has proven so many times that He will give us the strength to get through anything that comes our way. I don't doubt that He will be faithful with this new journey. The timing of me going back to work is such a God thing. He knew at this time, we'd need this financial provision for medical costs and trips to Houston and my inability to stick to my budget when I'm stressed. ;)
We have heard so many wonderful and encouraging stories and we look forward to that being Darah's story, as well! I have learned that even though 300,000 children live with JIA in the USA, there is shockingly little funding in the area of research for this disease. That is ridiculous and I hope to see changes in that quickly. Our sweet girl is so brave and has overcome so much. She has a Mommy and Daddy and the best brothers and sister in the world who are all ready to fight with her and for her. Love my girl and ready to get to remission quickly! Thankfully, we've really had some normalcy throughout all of this! I've been taking the boys with us on trips to Houston to have some special time with them and we've been doing lots of summer things. When I look back at the calendar, it is only God's math that explains how we've fit so much in despite all of these medical appointments! With God 2+2 sometimes equals 10. He is so good. All the time.
