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Child with High ASO for 4 years, rash and is on Penicillin

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Old 08-06-2012, 06:52 PM   #1
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Child with High ASO for 4 years, rash and is on Penicillin

I have no clue where to start.

4 years ago my daughter developed a rash on her leg, off to the pediatrician who sends us to the dermatologist, who takes a biopsy of her rash and sends us off to a rhumatologist after biopsy came back no specific rash. Off to the Rheumatologist who does a RA panel blood tests and comes back with a positive ANA 1:40, which is low, but she repeated it to make sure not a false postitive... and again 1:40. So here we are with this positive ANA, a high CRP ( creative protein) a high EOS, extremely high ASO (strep level- Non active) Dnase B titer (active) , EBV (Mono- non active), 4 years of the allergist, Infectious disease, rheumatology visits, cardiology, every 3 months for blood, 1 year and still on, penicillin 2x a day, nobody can tell me what is causing this high ASO in my daughter and why her joints are in pain, or what they could do about anything!

My daughter has not had strep in 2 years until this past May, her levels NEVER in 4 years were normal, 520.. 684... 837...1260..1450..1700 they vary , but when she got strep her CRP jumped to 11, ( normal is .2) her ASO jumped to 1700.. ( normal is under 300) Now I get a phone call Friday they want my daughter to start Penicillin shots instead of the pills because she got the strep in may and we cant have her getting strep again, if so it can develop into rheumatic heart disease. I am at my wits end! I have no clue what to do, I don't want to subject her to painful Dep penicilling shots, so i was going to see if i could see another doctor. But I was curious anybody had this or similar? And what did you do? Did it ever develop into heart disease?

Thank you so much for taking the time to read my post

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Old 08-07-2012, 06:32 AM   #2
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Re: Child with High ASO for 4 years, rash and is on Penicillin

I am not a Doctor, only a patient. But it is my understanding that the ASO blood test is run specifically if there is suspicion that a post infection complication might occur or is present. The antibiotics given are to ward off, hopefully, these complications and to prevent others from contracting strep. My husband was on penicillin for quite a long time as he was a carrier and I and our kid kept getting strep. In any event, post infection complications are relatively rare in the US nowadays, because of these better treatments. However, my boss contracted strep when she was a child and eventually ended up with rheumatic fever which did cause heart damage, that had to be treated for the rest of her life. This, of course, happened before antibiotic treatments were wisely available or used. A second opinion is not a bad thing, but I would have my questions written down before meeting with a doctor. I might want to make an appointment with original Dr with these same questions. Let the scheduling secretary know that you need understanding as to the why's and wherefore's of your daughter's treatment. At the appointment, ask about the reasoning behind the suggested treatment, the benefits and the possible side effects. Remember though, your daughter's Dr thinks that she will benefit from the treatment and that the benefits outweigh the side effects or discomfort. You might also ask how long this course of injection therapy might be expected to last. Ask what the plan is if they don't work. you might ask what the actual goal of the therapy is. You might ask if the joint pain IS a complication of the strep infection that they are treating. You might ask if there is no relationship, what is the plan to treat her pain. A list of 5 or 10 very specific questions that you would like answered, like the ones I used for examples, might be very helpful to you, your daughter and having your daughter's medical team all on the same page and aid in making every one comfortable with any specific treatment plan. Good luck and best wishes for both you and your daughter.

Last edited by luca689; 08-07-2012 at 06:51 AM. Reason: spelling, grammar and added something

Old 08-07-2012, 06:59 AM   #3
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Re: Child with High ASO for 4 years, rash and is on Penicillin

With ASO titers this high, I would consider taking your daughter to a Children's Hospital rheumatology clinic in your area or even the Mayo Clinic if you can. I would also want to make sure her urines are tested periodically for evidence of any effect on kidneys, and a baseline echocardiogram would be helpful to check her heart valves. You might even consider tonsillectomy, as she may be harboring strept in her tonsils that keeps reinfecting her. A consult with ENT in conjunction with the Children's Hospital in your area would be good, as within one institution there tends to be more of a team approach and communication with the various disciplines involved in a child's case. This is a tough problem, and I hope someone is actually treating her with anti-inflammatories or a generous aspirin regimen for her inflammation and pain. Good luck. I think she needs a team comprised of ENT, rheum, infectious disease, all coordinating her care.

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