juvenile idiopathic arthritis Enthesitis-related

Posted by: Missalicia

juvenile idiopathic arthritis Enthesitis-related - 07/31/20 12:21 AM

Hello. My son has been diagnosed with Juvenile Idiopathic Arthritis - Enthesitis-related (I have AS and have successfully been on the no starch diet for years). However, the no starch diet doesn't seem to be helping him enough. He still has swollen very sore feet (and very painful swollen knees at times, and painful upper inner thigh at times) and cannot walk. He's 12 and he is getting depressed about his inability to participate with his friends in activities he used to do and loves doing. He started taking Naproxen because the diet wasn't helping but he got extremely tired while on it and also started having heart palpitations and nausea so we have stopped that. He is taking an anti-inflammatory and mildly immune-suppressing herbal tincture, and non acidic vitamin c.
Does anybody have any ideas or experience with anything like this? Any help/advice would be so greatly appreciated. Thank you.
Posted by: Janclebro

Re: juvenile idiopathic arthritis Enthesitis-related - 08/16/20 08:26 AM

I had undiagnosed joint pain as a child, a forerunner to my AS diagnosis. Apart from the no starch diet, I found that getting to the bottom of food intolerances was key. Possibly your son has developed certain food intolerances? Also consider whether certain sugars could be implicated. If they're not being correctly digested, they could cause problems similar to those caused by starch.
Posted by: EricaK

Re: juvenile idiopathic arthritis Enthesitis-related - 09/28/20 07:19 AM

I'm sorry to hear your child is suffering. I was diagnosed with JRA (now called JIA) as a child with identical symptoms as your child. Now I have RA & AS and several SLE markers. What helped me most as a child was being in deep water for at least an hour per day. It didn't seem to matter if it was the ocean or a swimming pool, as long as I could move around freely without my feet touching the bottom. To this day 75F water is the best for me because it's cold enough to let me move without increasing the joint swelling. For pain I prefer a low dose of muscle relaxer over everything else. I'm allergic to wheat, almonds, cinnamon, and most salicylates.
Posted by: Missalicia

Re: juvenile idiopathic arthritis Enthesitis-related - 10/21/20 11:59 PM

Wow, I am so grateful to you both for your replies! We will definitely try the things you mentioned. Thank you so much.