Hi, My son who is 13 was recently diagnosed with having a gene for SA but Rheumy said it does not mean that he will get it. However, he has been experiencing RA symptons in his hands and feet along with back pain and weakeness in his legs. It appears that it maybe the onset of AS? From what I have read it's difficult to diagnose RA in children. the tests come back negative. He has complained of backpain since he was about 5 years old and doctors said there was nothing wrong as he got older he was sent for physical therapy. It seems that now as he is going thru puberty and the hormonal change may have set it off? Also he is lactose intolerant and when he has certain foods that have dairy products or processed foods/junk food it sets it off and he has flare ups. Can anyone share their experience with having AS and what it was like as the onset of it?
Thank you Blessings Rita
I am shocked and saddened that doctors can just dismiss back pain in a child that young. That's just not a common complaint - there is such a thing as juvenile arthritis too - my nephew had it (mostly in his knee/s) but fortunately outgrew it (doesn't always happen).
They've tested his genes? Did they already do blood tests? One would think that would happen first. But the hands and feet - that sure does sound like some kind of inflammatory arthritis.
Let us know how things go - and don't give up advocating for him, sounds like he needs you to keep after them!
Thank you for your comments. Yes they took several blood test even for lupus which the ANA test came back minorly positive but when they did more in depth blood test they did not find anything except for the gene for SA. Yes I will keep advocating for him. I do not want him on any heavy meds like the ones that I take. So for now it's lots of prayer, ibuprofen when he needs it, rest and eating healthy. Blessings Rita
ANA can be positive for other things besides lupus, including RA but it's not required for the diagnosis. When I was diagnosed with RA, my ANA was negative. It is now barely positive. My sister,on the other hand, who has polymyalgia rheumatica (and she's in her early 50s, which is young for PMR) had a rather high ANA, but doesn't have lupus. Very contradictory - I'm not sure she's really properly diagnosed, but a low dose of prednisone put her back on her feet. She's always been active and was finding it difficult to even get up out of a chair.
You have a point about not getting on heavy meds if possible. My nephew who had JRA was on just ibuprofen, I think. But ibuprofen in larger doses can cause stomach problems, it did for me. I switched to Celebrex and took that for years (even before I had RA, for other things). And now I can't take that either. I went for a couple of months with just Enbrel - which was great but does not take away all pain and can sometimes cause some for me. I followed what a friend of mine did years ago, took Yucca AR (it's actually a mix, not just yucca). I've also just added turmeric (yeah, the spice! I put about a 1/4 tsp on a small bowl of raisin bran at night, sounds weird, but it's antiinflammatory, acts as a Cox2 inhibitor like Celebrex, and I sleep better!
I have a friend whose daughter (mosaic Downs Syndrome, i.e., only partially is Downs in her genes, who takes Celebrex and Enbrel for her PA - psoriatic arthritis. She had hip problems, is in her mid-twenties. Seems to work well for her.
Thank you for the note about your son. I often wonder about my grandson. He has had back pain since he was very young, perhaps 5, and he is now almost 8, and does tell his parents that his back hurts him, but they seem to ignore this. The pain has become worse as he goes through puberty, and he has had quite a growth spurt in the past year. He even tells his mother that his legs hurt at night and he does cry when this happens. He doesn't complain about anything else, just the general pain in his back and legs. We have RA in my family, I have very bad osteoarthritis, and his grandparents also had RA. My daughter, who is my grandson's mother, has arthritis, which has become worse in the past 2 years and she is 34. If anyone has a suggestion, or could lead me in a direction to help my grandson, I would truly appreciate it, and good luck with your son.
It could be what used to be called growing pains, which is when the bones grow faster than the muscles. When this happens in the spine, it can be really bad. We have a friend (adult now) who was in the hospital for 6 months in 8th grade because of this. It was a real crisis. It is not trivial.
Thank you for your comment. Yes. My son complained the other day about a stomach ache after taking 3 Ibuprofen at night. Thank you for the info on Tumeric. I tried taking it as a supplement for a few weeks and I did not notice anything. Maybe I need to give it some more time? I have noticed that fish oil has helped me not wake up so stiff in the morning -I take it twice a day. Blessings, Rita
Hi, I forgot to ask what is the brand that sells "Yucca AR" and where can I get it?
Thank you Rita
The brand I have is Nature's Way. There are other versions that have just yucca and not the mix. I get it in a local health food store but I see that it's available online from several places...Just a caution, there is no guarantee that what works for one will work for someone else, and this is one of those 'not evaluated by the FDA' because there is not a standard. Also, I am not a medical professional but do feel that I am benefiting from this particular supplement. I wish you well!