JIA- Part 4

July 8- the first Rheumatologist

On Monday, Cooper had an MRI done on his left knee.

On Wednesday, we are meeting with a rheumatologist. On the way to this appointment, I had furiously chatted online with a woman that has two daughters with Down syndrome and arthritis. She had given me so much information going into this appointment, questions to ask, things to avoid, things to watch for in the exam. She armored me with some confidence, and that is absolutely invaluable when you're dealing with specialists.

This doctor decides, based on the MRI findings and also the history of limping (I believe diagnostic criteria calls for at least six weeks of prolonged joint issues), that Cooper has JIA. I ask her about Down syndrome associated arthritis, a newer term in the rheumatology world. She says that it might be classified as that, but not yet. Down syndrome associated arthritis tends to affects more joints and be more aggressive. She says it is likely to progress to other joints. She says that without help, the joints can be permanently damaged. She says that sometimes kids will go into remission on medication, and then be able to get off the medications, but with Down syndrome being at play, too, unmedicated remission is very unlikely. I am relieved to talk to someone that might have an answer for us, grateful that I don't have to keep chasing what is going on with his knee. But I'm gutted at the options for treatment. I had looked into them a little bit prior to being here. They are hardcore immunosuppressants, the first of which is actually a chemo medication. The side effects are horrendous.

Thankfully, Cooper's left knee appears to be the only joint affected, and this makes his treatment a lot more conservative. So, the plan is to put a steroid into the knee, put him on naproxen (an anti-inflammatory medication- that I knew had caused ulcers in some kids, and was known for causing kidney damage), and wait to see if it improves. "Some kids will get the injection and be good for months or up to a year. Others, it won't help at all. We'll have to wait and see," the doctor says. She doesn't want to do the systemic immuno-suppressing medications yet, with only one joint affected. I don't like the idea of Cooper being on naproxen long term, and I tell her so. "We have plenty of kids on it long term, with no issues," she says. I don't love that response, but I do like her.

The interim- diet, functional medicine, and research

A couple years prior to all this, my big kid had issues with her tonsils. They were ginormous. She snored while asleep, and even while awake. I hated the idea of having her tonsils taken out, so I researched what I could do. I landed on an anti-inflammatory diet, among other things. So I had some experience with what that type of diet could look like. As soon as I learn that "synovitis" = "inflammation" after the MRI, I immediately begin taking out inflammatory foods. We already ate pretty clean, and gluten had been off the table for several months due to stool issues Cooper was having, so now I cut dairy and sugar. Still today, he is not eating gluten, dairy, or sugar. I opt for as much whole food over processed food whenever possible. I make fresh smoothies every day, and I weigh him weekly to make sure his weight is staying stable.

In researching diet, someone told me about the Paddison Program. This man out of Australia has this program built around whole foods that he created when he, himself, overcame rheumatoid arthritis. It's a very strict, six month long program, and though they do provide access to doctors, therapists, and nutritionists, the cost is quite high. It's a lot of money for my toddler to maybe not even participate in the diet portion. I ask them if they will cut the program time in half, therefore cutting our financial commitment in half. They won't.

Another path I choose to pursue is functional medicine. I knew about the Peirson Center from hearing about it online over the years. I had looked into it a little bit, and knew it was quite expensive. Dr. Erica Peirson started this functional medicine clinic, and she has a son with Down syndrome. They are specialists in helping people with Down syndrome, and we can meet with them virtually, which is a bonus for me. No travel and/or having to find a babysitter for my other kids. But the price is still hard to swallow. We've already spent so much on medical bills in the last couple months. Someone mentions the Selah Foundation to me, a nonprofit that exists specifically to help families afford functional medicine care. With their help, I get Cooper in with the Peirson Center and we begin their process of helping Cooper feel his best. Because why wouldn't I try looking at his health from every angle? I send in the ordered stool and urine tests, as well as obtain ordered bloodwork. We are aiming to lower inflammation throughout Cooper's body through diet and supplementation. Our doctor with The Peirson Center wants me to find a local doctor who will aspirate the knee and test the fluid. I will try to get that done. For now, I wait to see what comes of these functional tests.

I'm not afraid to read research, either, and I spend hours and hours diving headfirst into anything and everything I can find on JIA and Down syndrome. I learn that a child with DS usually does not get a diagnosis of JIA for 2-3 years, versus a typical child who will get the diagnosis in about 3 months. The difference in diagnosing time is crazy! The studies say that kids with DS often have a speech delay that interferes with diagnosing. They also tend to experience pain differently, and with hyper-mobility/ low muscle tone on top of that, diagnosing a joint issue is very difficult in a child with DS. I personally believe that most providers in a specialty setting have very little exposure and/or training specific to Down syndrome, and most of the issues with the time it takes to diagnose JIA in a child with DS are due to diagnostic overshadowing, which basically means the doctor sees the child has Down syndrome and uses characteristics of DS to push the patient away from treatment. Example: "Oh, (x) symptom is just because of Down syndrome." No, it's not. If a doctor tells me that, I run.

Thankfully, that is not something I've heard very often to this point.

July 14- the steroid injection

We drive the three hours again to have Cooper's knee injected with a steroid. I ask about aspirating the knee fluid- shouldn't we test for infection in it? As we sit in the pre-op room and discuss this with the doctor, she says she doesn't think it seems necessary, and it's a harder recovery. It feels like I'm trying to talk her into it. She says she will if I really want her to, but honestly makes me feel like it's bad decision. I cave, and agree with her. After all, she's the doctor. "Well, I guess I just want to do it and hopefully find something else to blame this on," I chuckle, trying to hide my emotion. Her face is serious. "This is pretty classic JIA," she says.

Fine. I just don't want it to be that. I do not.

Post steroid injection