Questions about ASO test

[pandakid11]

Hi

Back in November, my son got very ill with throwing up, fever etc...this migrated to uncontrollable movements, shaking etc...scared us to death. We went to his PCP and emergency room. It never got better, so we admitted him to hospital, who ran MRIs, EEGs etc...after all this, they said it was conversion disorder. We brought him home

and it never improved. They tried tenex, but this made it worse and through him into a stupor. After tracking down a doctor that deals with unusual cases, we have found he has severely high ASO test, thus diagnostic for Rheumatic Fever.

He has had shakes (uncontrollable movements), fevers, feels awful, severe pain (especially in joints), fatigue and looks like he has the worst flu. Also, he is very emotional, either crying or has periodic anger. He has already been on multiple antibiotics so we are plugging along praying for a miracle.

My questions are this:

1) How did hospital miss this? I realize it was never in his throat, but still, the symptoms!!!

2) How do you get over Rheumatic Fever? If Prednisone does nothing, does this rule out PANDAS? He is on day 5, the final day, and so far, not better.

 

Thanks for your help. 2 Wiped out parents.

[peglem]

Rheumatic fever happens when a the antibodies to a strep infection attack tissue in the heart valves. Is there evidence of heart involvement?

 

Elevated ASO is just a marker for antibodies to a strep exotoxin- it indicates a recent bout of strep. A single measure of ASO cannot even tell you if there is a current strep infection- if you see a rise in ASO over time, that would indicate an unresolved infection.

 

Poor response to prednisone does not rule out PANDAS.

[colleenrn]

Based on his symptoms, they should have cultured him and run strep titers. Did the dr who ran the ASO diagnose him with rheumatic fever? What antibiotic is he being treated with right now? That would be my main concern right now- that the strep is being treated aggressively with the correct antibiotic. here are the AHA rheuamtic fever guidelines (also endorsed by AAP)

 

http://www.aafp.org/afp/2010/0201/p346.html

 

Colleen

[EAMom]

Hi

Back in November, my son got very ill with throwing up, fever etc...this migrated to uncontrollable movements, shaking etc...scared us to death. We went to his PCP and emergency room. It never got better, so we admitted him to hospital, who ran MRIs, EEGs etc...after all this, they said it was conversion disorder. We brought him home

and it never improved. They tried tenex, but this made it worse and through him into a stupor. After tracking down a doctor that deals with unusual cases, we have found he has severely high ASO test, thus diagnostic for Rheumatic Fever.

He has had shakes (uncontrollable movements), fevers, feels awful, severe pain (especially in joints), fatigue and looks like he has the worst flu. Also, he is very emotional, either crying or has periodic anger. He has already been on multiple antibiotics so we are plugging along praying for a miracle.

My questions are this:

1) How did hospital miss this? I realize it was never in his throat, but still, the symptoms!!!

2) How do you get over Rheumatic Fever? If Prednisone does nothing, does this rule out PANDAS? He is on day 5, the final day, and so far, not better.

 

Thanks for your help. 2 Wiped out parents.

 

Oh how I hate the Conversion Disorder diagnosis...an excuse for arrogant doctors to NOT look for a true cause of a patient's symptoms. I also kills me that these docs spend thousands running MRI's and EEG's but don't run a $30 throat culture (or strep titers) when kids some in with these motor symptoms.

 

Did they ever run throat cultures? My PANDAS dd had no red sore throat, yet we demanded a throat culture and it was positive for strep. Her assymptomatic sister was also positive on the rapid.

 

Is your son on antibiotics? Which one and what dose and how much does he weigh?

 

Do you have a hx of rheumatic fever in your family?

 

Where do you live? You may need to see a PANDAS doc.

 

I would also throat culture family members to check for carriers.

 

Hang in there, you've found a great place to post questions!!

Edited April 2, 2012 by EAMom

[pandakid11]

Hi

They did the swab test but he never had a sore throat. It was not positive for strep but he must have had it in his body. The doctor he is seeing now ran the ASO test and it is sky high AFTER anti-biotics. He was suspecting strep or some sort of infection, thus the reason he quickly jumped to anti-biotics (but this was 3 months after initial infection). I think the hospital BLEW it. He never showed any history of conversion disorder, nor does conversion disorder cause fevers (he had plenty). If they would have given him anti-biotics then, maybe we wouldn't be in such sorry shape now. He has been on zithromax for 3 weeks, followed by vancomycin (thought to help

stomach infection of mycoplasma that came up and possible c-diff), then now he had a penicillan shot and is on Rifumpin (sp?). Plus, he is taking apo-hepat for liver help, noni and monolaurin. He also is using baclofen for the shakes (it helps unless he is really bad). He is finishing a 5 day run of prednisone. What a mess. He just feels horrible.

I think we should probably get him to a pediatric rheumy per our doctor. We are in Denver. Thanks

 

 

 

 

Hi

Back in November, my son got very ill with throwing up, fever etc...this migrated to uncontrollable movements, shaking etc...scared us to death. We went to his PCP and emergency room. It never got better, so we admitted him to hospital, who ran MRIs, EEGs etc...after all this, they said it was conversion disorder. We brought him home

and it never improved. They tried tenex, but this made it worse and through him into a stupor. After tracking down a doctor that deals with unusual cases, we have found he has severely high ASO test, thus diagnostic for Rheumatic Fever.

He has had shakes (uncontrollable movements), fevers, feels awful, severe pain (especially in joints), fatigue and looks like he has the worst flu. Also, he is very emotional, either crying or has periodic anger. He has already been on multiple antibiotics so we are plugging along praying for a miracle.

My questions are this:

1) How did hospital miss this? I realize it was never in his throat, but still, the symptoms!!!

2) How do you get over Rheumatic Fever? If Prednisone does nothing, does this rule out PANDAS? He is on day 5, the final day, and so far, not better.

 

Thanks for your help. 2 Wiped out parents.

 

Oh how I hate the Conversion Disorder diagnosis...an excuse for arrogant doctors to NOT look for a true cause of a patient's symptoms. I also kills me that these docs spend thousands running MRI's and EEG's but don't run a $30 throat culture (or strep titers) when kids some in with these motor symptoms.

 

Did they ever run throat cultures? My PANDAS dd had no red sore throat, yet we demanded a throat culture and it was positive for strep. Her assymptomatic sister was also positive on the rapid.

 

Is your son on antibiotics? Which one and what dose and how much does he weigh?

 

Do you have a hx of rheumatic fever in your family?

 

Where do you live? You may need to see a PANDAS doc.

 

I would also throat culture family members to check for carriers.

 

Hang in there, you've found a great place to post questions!!

[Dedee]

You mentioned Mycoplasma. Were his Mycoplasma titers elevated?

[bulldog24]

Hmmm something seems odd. They dont give antibiotics for conversion disorder?

 

Thats some heavy duty stuff...

 

I am confused

[911RN]

Hi

Back in November, my son got very ill with throwing up, fever etc...this migrated to uncontrollable movements, shaking etc...scared us to death. We went to his PCP and emergency room. It never got better, so we admitted him to hospital, who ran MRIs, EEGs etc...after all this, they said it was conversion disorder. We brought him home

and it never improved. They tried tenex, but this made it worse and through him into a stupor. After tracking down a doctor that deals with unusual cases, we have found he has severely high ASO test, thus diagnostic for Rheumatic Fever.

He has had shakes (uncontrollable movements), fevers, feels awful, severe pain (especially in joints), fatigue and looks like he has the worst flu. Also, he is very emotional, either crying or has periodic anger. He has already been on multiple antibiotics so we are plugging along praying for a miracle.

My questions are this:

1) How did hospital miss this? I realize it was never in his throat, but still, the symptoms!!!

2) How do you get over Rheumatic Fever? If Prednisone does nothing, does this rule out PANDAS? He is on day 5, the final day, and so far, not better.

 

Thanks for your help. 2 Wiped out parents.

 

From my experience, if really diagnosed with Rheumatic fever- he should see a pediatric cardiologist and have an Echo (like ultrasound) of the heart at the very minimum. RF effects the heart valves and they would see this on Echo....good luck! Infectious Disease doc would be good idea also.

[tpotter]

Based on his symptoms, they should have cultured him and run strep titers. Did the dr who ran the ASO diagnose him with rheumatic fever? What antibiotic is he being treated with right now? That would be my main concern right now- that the strep is being treated aggressively with the correct antibiotic. here are the AHA rheuamtic fever guidelines (also endorsed by AAP)

 

http://www.aafp.org/afp/2010/0201/p346.html

 

Colleen

 

 

They should have tested him for strep, but look at the LeRoy teens...positive for strep, mycoplasma pneumonia and 2 CDC positive for Lyme (and of course, we all know they, too were diagnosed with conversion disorder.) Heck, my guy was also diagnosed with conversion disorder in the hospital, with positive rapid strep, scarlet fever, 104 degree fever, chorea, and all the neuropsych symptoms. And, I had already told them that DS was diagnosed with PANDAS (I was quickly informed that "PANDAS is voodoo!")

 

Basically, there are doctors who, I truly have to say, just don't care, and/or are so egotistical, that they can't see their heads from their *.X***!

 

Now that I got that off my chest, I totally agree with Colleen. You need to put the "how could it happen?" on the back burner (you can always revisit it later if necessary, but truly pick your battles.) 5 days is not enough abx for ARF, and additional tx may be necessary, too. I would find a good rheumatologist or doctor in general who SPECIALIZES IN RHEUMATIC FEVER! Make sure you check his heart. Make sure it truly is ARF (could be PANS). Oh, and ARF does not necessarily affect the heart. Basically, it affects the joints and muscles, and can also cause rheumatic heart disease (so there is hope that you caught it in time.) It can also cause sydenham's chorea.

 

If it turn out that DS does not have ARF (which my DS turned out not to have...instead he has PANDAS, PITANDS, and later we found out Lyme, too), I would highly recommend that you call the NIMH, and see if he qualifies for the IVIG study (in fact, I would probably call them today...he may qualify anyway.) They will do all the testing, pay all your expenses, and get treatment for free if he qualifies! You can check it out here: http://www.clinicaltrials.gov/ct2/show/NCT01281969?term=Pediatric+Autoimmune+Neuropsychiatric+Disorders+Associated+with+Streptococcal+Infections+%28PANDAS%29+Research+Study+for+Children&rank=1

 

And, it helps all of us, as well, because the study can be finished up, and we will all benefit from being able to get IVIG paid for by insurance, if needed for our own kids.

[EAMom]

 

They should have tested him for strep, but look at the LeRoy teens...positive for strep, mycoplasma pneumonia and 2 CDC positive for Lyme (and of course, we all know they, too were diagnosed with conversion disorder.) Heck, my guy was also diagnosed with conversion disorder in the hospital, with positive rapid strep, scarlet fever, 104 degree fever, chorea, and all the neuropsych symptoms. And, I had already told them that DS was diagnosed with PANDAS (I was quickly informed that "PANDAS is voodoo!")

 

Basically, there are doctors who, I truly have to say, just don't care, and/or are so egotistical, that they can't see their heads from their *.X***!

 

 

It kills me how the same docs that say "PANDAS is voodoo" believe in Conversion Disorder.

[fightingmom]

To that, I say "Conversion disorder is PooPoo!"

[pandakid11]

Hi

Doctor he is seeing now put him on Abx, not the hospital (conversion disorder dx). Hospital knew strep was rampant in his school. He had every symptom including the shaking. Lousy. We are worried because his heart races

alot, sometimes really bad. His ASO is very high.

Ugh!

 

 

 

Hmmm something seems odd. They dont give antibiotics for conversion disorder?

 

Thats some heavy duty stuff...

 

I am confused