Remaining Steady

There is a lot to post on regarding both Mia and JJ. So, bear with me as I bounce around a bit... 

I took the kids to see their rheumatologist the first week of April for a follow-up appointment. She took a look at Mia first, who had just had her left knee drained on March 16, 2012. After examining her joints, she told me she was very happy with how Mia looked and suggested seeing what happened if we skipped a dose of Indocin here or there because we may be able to start weaning her off of the medicine. She also ordered lab work to be done on Mia, whose results came back normal except for a slightly elevated thyroid.

Then she took a look at JJ's joints. During the exam, he had much pain and resistance in his left elbow and in both hips. She looked over a t me and said, "I am NOT happy with how he looks." She then ordered a bunch of lab work to be done in preparation for starting JJ on methotrexate (DMARD - disease-modifying anti-rheumatic drug) . She also set up another ultrasound appointment to have JJ's elbows, hips, knees and ankle checked again. 

I then spoke to JJ's gastrointestinal doctor and updated him on everything. He agreed with the rheum's decision to put JJ on methotrexate (MTX). He thinks that all the tummy issues JJ has been having for the last year have been caused by the NSAIDs he's been on, specifically Meloxicam (Mobic). He said putting him on MTX would help with all the stomach pain he's been having. He, too, ordered some lab work to be done on JJ. 

I also spoke to his pediatrician and told him what was going on. He agreed with the rheum and gastro doctors that JJ would benefit from being on methotrexate.

So, I took my boy in, once again, to be "stuck" so we could figure out what is going on with his body. They also did a urinalysis, which had to be repeated because the first urinalysis came back showing that JJ had white blood cells in his urine. 

Then, this past Friday (4/20/12), we took JJ to Tufts again for his scheduled ultrasound appointment. The ultrasound confirmed he has fluid on his left elbow, on the right hip but a more significant amount of fluid and inflammation on the left hip, and on both knees. 

In the meantime, we are getting JJ's tonsils checked again by the ENT he saw this past fall. Two doctors have commented in the last month that his tonsils look larger than normal. After complaining that food has been getting stuck and he can't swallow it, I made another appointment with the ENT for tomorrow (4/24/12). They said tonsils don't usually peak with kids until age 5. Mia had hers out last summer (she was 5yo) because she had several episodes of sleep apnea due to enlarged tonsils. JJ has had problems eating and has started snoring loudly....heading down the same road as his sister. So, we'll see what the doctor says tomorrow.

Back to Mia..........

So, my girl starts to complain of joint pain in the RIGHT knee last week, a joint she has never had problems with...ever. By Saturday, her knee is so swollen you can no longer see her kneecap. She laid on the couch all day and iced it off and on throughout the day. I finally paged the pedi rheum on-call late Saturday afternoon because her knee looked like this:

I spoke to Dr. Davis, who works with Mia's doctor, and he asked if Mia has had any infections or illnesses lately. I told him she had a little gastro bug last week that only last two days - no vomiting, just diarrhea. He thinks this bug may have set off her immune system to attack her joints and agreed we should continue with her medicine because weaning her at this point would not be a good idea.

So, they want her to come in tomorrow to be examined when her brother goes into to meet with the ENT. If the swelling does not go down, he mentioned having her right knee drained and injected with steroid this Friday. This will be her fourth joint drain and injection since she was diagnosed at 22 months of age. We stayed home all day Sunday and iced her knee, but the swelling has not gone down. We'll know tomorrow about what they want to do for Mia.

In the meantime, we have gone back to having both kids on a strict gluten-free, dairy-free diet because we know it works. We have seen results from this diet in the past. The first time we did this with Mia we saw drastic results within a month. It's all about getting to the root of the problem - their immune systems. Also, both kids are taking their cod liver oil (1 tsp a day), which is also a great inflammation reducer and joint lubricator. We are back to doing pomegranate juice every day and avoiding nightshade veggies again. Might sound a bit extreme eliminating McDonald's and pizza and ice cream and having them eat more fruits and veggies and foods that help reduce inflammation in their bodies. But, wouldn't you do whatever you possible could if it was your child?? Makes sense to me!!

And, despite all this craziness, we know God has everything under control. He is in their tomorrows. He loves them more than my husband and I ever could and is taking care of our kiddos. He guides us and directs us in the way we should go for our children. Even during their most challenging, most painful, most tearful moments (and ours), we remain steady.

People with their minds set on you, you keep completely whole, steady on their feet, because they keep at it and don't quit. - Isaiah 26:3 (MSG)