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I know many/most of you have been dealing w/ these things longer than me but here's the aggravation. Took DS to his ped on Sept 15 to talk to her about my suspicions of PANDAS and get her to run titers. She agreed to do the ASO titer and some general bloodwork like liver, kidney, thyroid function, plus some other more routine stuff. I was told I would receive the results. I assumed (you know what happens when you assume?) it would be mailed to me. I waited two wks, then called. Informed they will not mail anything do to HIPPA laws. I would have to come and get it. OK. Well, what does it say? Everything is normal. A letdown for us in pursuing the diagnosis. I picked it up today. Imagine my surprise to see that the strep ASO titer was not done. An elaborate EBV (Epstein Barr-mono) testing of three or four subtests was done instead. ARGHHHHHHHHHHHHHHHHHH.

 

I had my DS6 stuck w/ a needle for nothing. The only good news is (if you call it that) we still don't know if he has antibodies to strep or not.

 

We are leaving Friday for suburban DC for a two day neuropsychological evaluation. When we return, I am contacting Dr K in Chicago and requesting the kit from Dr C. We have no insurance coverage for any of this since we have an HMO but we are going to find a way in order to help our son.

 

In the meantime, DS6 is have a flair up of symptoms this past week. We took him to Urgent Care on Sunday w/ a headache, off and on sore throat, low grade fever. Was told he has a virus, its going around, they've swabbed 20 kids, no strep so they aren't going to swab him either. It never ends.

 

Cindy

Edited by nicklemama
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I know many/most of you have been dealing w/ these things longer than me but here's the aggravation. Took DS to his ped on Sept 15 to talk to her about my suspicions of PANDAS and get her to run titers. She agreed to do the ASO titer and some general bloodwork like liver, kidney, thyroid function, plus some other more routine stuff. I was told I would receive the results. I assumed (you know what happens when you assume?) it would be mailed to me. I waited two wks, then called. Informed they will not mail anything do to HIPPA laws. I would have to come and get it. OK. Well, what does it say? Everything is normal. A letdown for us in pursuing the diagnosis. I picked it up today. Imagine my surprise to see that the strep ASO titer was not done. An elaborate EBV (Epstein Barr-mono) testing of three or four subtests was done instead. ARGHHHHHHHHHHHHHHHHHH.

 

I had my DS6 stuck w/ a needle for nothing. The only good news is (if you call it that) we still don't know if he has antibodies to strep or not.

 

We are leaving Friday for suburban DC for a two day neuropsychological evaluation. When we return, I am contacting Dr K in Chicago and requesting the kit from Dr C. We have no insurance coverage for any of this since we have an HMO but we are going to find a way in order to help our son.

 

In the meantime, DS6 is have a flair up of symptoms this past week. We took him to Urgent Care on Sunday w/ a headache, off and on sore throat, low grade fever. Was told he has a virus, its going around, they've swabbed 20 kids, no strep so they aren't going to swab him either. It never ends.

 

Cindy

 

 

 

Something similar happened to me - the lab ran the wrong test on my son. Call the lab to confirm which test they were supposed to run and/or call the Dr. to order the test...usually labs will keep blood for about 2 weeks or longer and can add a test.

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I feel your anger/frustration. Yeah, just because those other kids tested negative on rapids means no one else in the area could possibly have strep. Did they run cultures on those other kids? Bet not.

 

As for the ped....well, luckily you read the results in detail. Contact them and tell them they messed up and then take him there for strep tests that the Urgent Care didn't do over the weekend.

Edited by Vickie
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I want to urge you to get copies of the blood results yourself and take them to other docs if you have questions. My pediatrician told me everything was "fine" last February - that was her interpretation. In reality, elevated IGG for mycoplasma, elevated DNASE B, and low s. pneumonia titers really meant something was brewing... and it turned out to be a sinus problem that necessitated surgery. The pediatrician really, truly believed everything was "fine". She just did not see the same patterns that the PANDAS docs saw. My son is doing much better now, post-infection.

 

Also, regarding HIPAA - you may need to sign a HIPAA note to release records to yourself. Once you do that, you should have access to all your child's records, though the doctor office can charge you to make copies of the records.

 

Best wishes!

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