Is 600 high for ASO titer?

[tylermom]

my nephew is 11 and he had kawasaki disease 3 years ago this month. he has had many strange symptoms since the kawasaki like unexplained rashes, his eyes still get red when he gets sick or even when he doesn't appear to be sick. he also will get strep throat about twice a year. his parents do not take him to a special dr. for the kawasaki or take him to get yearly heart check ups. they were using a quack for a pedi. they finally switched him this past month to their family dr. last week he had a low grade fever which is not uncommon for this child he runs fevers sometimes and has rashes with them. this particular rash was really red and his cheeks were bright red and his arms, torso, etc were blotchy and itching. the school sent him home so he went to the dr. my mom took him and i told her to ask the dr. to test his ASO titer level. i figured it would be high. i really think all of our strep and PANDAS symptoms comes from my nephew because he is with my kids all the time. the dr. thought his rash was possibly fifths disease. a few days later his ASO level came back being 600 so the dr. now has him on amoxicillian. the nurse said that the rash could have been scarlet fever??? his fevers were not high, he was just really tired and his joints were hurting. his joints seem to hurt all the time and his parents think nothing of it. so is 600 really bad??? my kids were around him however, my kids PANDAS symptoms seem to be going away....moods are good, tics have gone away for now.

 

jennifer

[Worried_Dad]

Unfortunately, there's a lot of disagreement between docs and labs about what constitutes "positive" for ASO for kids. Some labs consider anything above 160 to be positive; some 200; some will say that school-age kids can go as high as 330 and still not be "unambiguously positive." But - no matter how you slice it - I think 600 would be considered well above the normal range for anyone, adult or child.

 

Although I do recall "doubting doc horror stories" on this forum where PANDAS kids had ASO's come back in the 500's and the doc dismissed it, just saying "he/she just runs high titers." Arrrgggghhhh!

[MomWithOCDSon]

Unfortunately, there's a lot of disagreement between docs and labs about what constitutes "positive" for ASO for kids. Some labs consider anything above 160 to be positive; some 200; some will say that school-age kids can go as high as 330 and still not be "unambiguously positive." But - no matter how you slice it - I think 600 would be considered well above the normal range for anyone, adult or child.

 

Although I do recall "doubting doc horror stories" on this forum where PANDAS kids had ASO's come back in the 500's and the doc dismissed it, just saying "he/she just runs high titers." Arrrgggghhhh!

I agree with Dad; our lab's top end of the "normal" range is 170, so at 600, this boy is well into the "high" level, one would think.

[sf_mom]

Our children were exposed to a child who had ARF 'Acute Rheumatic Fever' in 2007 at a playdate. Shortly thereafter two of our children became very ill, one who looked like he had Kawasaki's and one formally diagnosed with Kawasaki's. Unfortunately, while in the hospital with our younger son who had Kawasaki's we were told it wasn't contagious and very unlikely our older son had Kawasaki's at the time. Our older son seemed to recover on his own but developed his first TIC six months later after what appeared to be a strep related illness (not cultured at the time). ALL FIVE CHILDREN that attended playdate in 2007 now have elevated CaM Kinase indicative of PANDAS... two are currently being treated by Dr. K with IVIG. Kawasaki's shares 93 symptoms in common with RF and believed by some researchers to be caused by one of the S. pyogenes strains of strep. Which is the same strains that cause RF.

 

Our younger son, has had a similar rash. Actually, feels like sandpaper if you run your hand across it..... I highly recommend your nephew see someone who specializes in Kawasaki's, oftentimes more than one IVIG treatment is required to resolve symptoms and it definitely sounds like your nephew has had lingering issues. Typical IVIG dosage is 2 m.g./kilogram over two days. He will continue to have issues if not addressed and I am highly suspicious as to why your child(ren) might have PANDAS.

 

-Wendy

Edited April 7, 2010 by SF Mom

[tylermom]

thanks wendy for you info on kawasaki. my nephew has had one IVIG and that was at the hospital during his illness. my nephew, neice and 3 of my 4 children have all had strep several times. my dd being the one that has had it the most. my dd does not have PANDAS symptoms at this time but has had OCD issues in the past during which time she was keeping strep throat. she has had her tonsils out and has not had strep that we know of since the tonsils came out. my oldest ds started having tics at 18 months along with OCD and very bad behaviors. he was dx'd with tourette's but now i'm thinking it's actually PANDAS. my youngest ds is 4 and now having all the PANDAS symptoms, tics, OCD, bad behaviors, etc, etc. i am really wondering if all this came from my nephew. when my nephew had kawasaki the dr. said that his blood test showed EBV in his blood. my dd had a blood test 2 years ago and it also showed EBV. during all the times that my dd was having lots of strep throat infections she slept all the time. she would spike a fever of 103 or 104 for 1 or 2 days and sleep, sleep, sleep, then the fever would go away after a day or so and she'd still be tired but no fever. i quit taking her to the dr. for this because everytime i was told it's just a viral infection. i'm wondering if all that came from the strep in her body. i cannot find a dr. in my area that believes in PANDAS. they have heard of it and actually believe that it exist but they only think that the symptoms occur right after strep then go away with antibiotics. i told the dr. that both my ds's who suffer with PANDAS like symptoms have had lots of strep throat infections but the dr. says that if the strep throat is treated and the symptoms still occur then it's most likely tourette's and not PANDAS. the dr. doesn't think it's necessary to check my dc ASO levels since they are not showing symptoms of strep. i'm tempted to bring them in and lie and say they're complaining of a sore throat and headache and see if maybe he would test them.

 

jennifer

[sf_mom]

Jennifer,

 

You really need to find a new Dr. Minimally, I recommend you consult with a PANDAS specialist via the telephone to give you a better perspective with what is going on with your children and relationship to nephew. Dr. K is very familiar with the Kawasaki's link and the potential impact if untreated. There are some very basic test you can do in advance of the phone consult ASO, Anti-DNAse-B, CBC panel, Mycoplasma Pneumonia and Lyme disease. Possibility of co-infection does exist. EBV is present in about 85% of the population and for many it does not impact them BUT if the immune system has been TAXED it can present a huge problem.

 

There is a lot of hope if treated correctly so please don't waste your time trying to educate Dr.'s.

 

-Wendy

 

 

 

 

Its very easy to miss certain illnesses or confuse them with others. Its very possible your children had

 

thanks wendy for you info on kawasaki. my nephew has had one IVIG and that was at the hospital during his illness. my nephew, neice and 3 of my 4 children have all had strep several times. my dd being the one that has had it the most. my dd does not have PANDAS symptoms at this time but has had OCD issues in the past during which time she was keeping strep throat. she has had her tonsils out and has not had strep that we know of since the tonsils came out. my oldest ds started having tics at 18 months along with OCD and very bad behaviors. he was dx'd with tourette's but now i'm thinking it's actually PANDAS. my youngest ds is 4 and now having all the PANDAS symptoms, tics, OCD, bad behaviors, etc, etc. i am really wondering if all this came from my nephew. when my nephew had kawasaki the dr. said that his blood test showed EBV in his blood. my dd had a blood test 2 years ago and it also showed EBV. during all the times that my dd was having lots of strep throat infections she slept all the time. she would spike a fever of 103 or 104 for 1 or 2 days and sleep, sleep, sleep, then the fever would go away after a day or so and she'd still be tired but no fever. i quit taking her to the dr. for this because everytime i was told it's just a viral infection. i'm wondering if all that came from the strep in her body. i cannot find a dr. in my area that believes in PANDAS. they have heard of it and actually believe that it exist but they only think that the symptoms occur right after strep then go away with antibiotics. i told the dr. that both my ds's who suffer with PANDAS like symptoms have had lots of strep throat infections but the dr. says that if the strep throat is treated and the symptoms still occur then it's most likely tourette's and not PANDAS. the dr. doesn't think it's necessary to check my dc ASO levels since they are not showing symptoms of strep. i'm tempted to bring them in and lie and say they're complaining of a sore throat and headache and see if maybe he would test them.

 

jennifer