Since August of last year, my 6 year old son started having sporadic leg pain which over the months became worse. He would have swelling of the ankles & knees, low grade fevers, stomach upset, a rash on his body (one raised and one not), fatigue, and most recently, nightmares waking him up at night.
We were finally able to get him into a pediatric rheumatologist and his ANA came back barely elevated and everything else was normal except a ASO titer of 1418. She said he has post strep reactive arthritis. The pedi rheumatologist office is in another town so the results went to our pedi who had us come in so he could send us a referall for a pedi cardiologist. While there, he because concerned because our pedi rheumatologist was not treating with antibiotics & the ASO was so high. He did a strep swab and it came back normal but my son's tonsils and lymph nodes were swollen. He repeated the ASO titer and it was 1416. He put my son on penicillin for 10 days but our pedi rheumatologist does not seem that concerned unless his EKG & echo come back abnormal. If it is normal, they said to followup in July?! My son is in a lot of pain and I don't understand why were are not attacking this with serious antibiotics.
Has anyone else had an ASO as high as 1418 without a current strep infection??
What can be worse than when our kids get sick??? I am with you, mom.
My daughter now is 35, but when she was 4 she got same exact symptoms, and had her arthritic pain for couple of years. They had to remove her tonsils (which find out later it was a mistake, they don't do it so fast anymore b/c it didn't decide her problem) thinking by doing this it will resolve her issues.
Nobody could help us, but I remember children cardiologist told me I will have to be on top of things to check her heart every year. We did and at age 17 we discovered she has heart problem. She had to get permission from her Dr to get pregnant. Thank God everything went OK for her, but she is under his care for the rest of her life.
Unfortunately I don't remember exactly all her tests results, but what I remember very well it was post strep complications: active arthritis and inflammation of the heart muscle.
I have to say I still remember our sleepless nights where I massaged this tiny body all night b/c she complained about pain in her arms and hands, legs and back... No matter what I did, she was in pain.
Not much they could do - same Penicillin treatments and working on strengthening her immune system. I bought juice maker and made her fresh organic juices every single day using a lot of anti-inflammatory fruits, veggies and flax seeds, etc.
Thank you for sharing with us and hope your child will get 100% better
My son had titters above 1,000. I mentioned P.A.N.D.A.S. to our pediatrician and he blew me off. He did not connect rash, leg pains and a strep infection. My son does not have compulsions like you would see in OCD. After a long journey we went to a neurologist and now we have one that specializes in P.A.N.D.A.S. - he refers to my son's titers as being extremely elevated so yours would fit in that category too. They should test for the exact microbe so they can get the right fit for antibiotic- it will be a long haul on antibiotics not just a 10 day course. You need to be vigilant because so many doctors are misinformed about PANDAS but our sons improvement has been miraculous. They will test blood work to see if titer levels come down after a while on antibiotics. Don't dismiss PANDAS if you think it is only presents as OCD - it doesn't only look like this.
The ASO titer reflects a current or PAST, usually recent, infection with strept. The symptoms of joint pain, etc, are due to immune complexes. A 10 day course of PCN should eradicate any current strept infection, but this sounds like rheumatic fever, and your son should be seen by a pediatric rheumatologist, in my opinion, for control of these symptoms. Urine should be checked periodically, as well as the cardiology consult suggested by your son's Dr.
My son had an ASO titer level of 1960 with no active strep infection - the highest his specialist had ever seen. He was diagnosed with PANDAS and has since been treated with a tonsiletomy, high doses of Augmentin for over 18 months, steroids and finally three courses of IVIG. After three years of barely functioning, he is almost symptom free but his ASO titer levels remain at 760.