Robinhubb Posted July 2, 2019 Report Share Posted July 2, 2019 So blood work is normal. The doctor told me my baby needs a psychiatrist..im going to one today. But how does a honors student hide intrusive thoughts for 3 years and then suddenly get sick and have dental work and can no longer hide it and they get worse. Im nervous, and frustrated. If anyone has any advice please please let me know. I do not want her on meds.. even the couselor advised me to do everything as hollistic as possible. Link to comment Share on other sites More sharing options...
MaryAngela Posted July 2, 2019 Report Share Posted July 2, 2019 After suffering with OCD and intrusive thoughts for over 3 1/2 years, we finally were able to get a rheumatologist to prescribe a high dose of Augmentin for 30 days for our DS in 2016. During the 3 1/2 years we tried unsuccessfully to treat his symptoms with pharmaceutical meds. The doctor let us start the abx before his bloodwork came back, which ultimately showed normal Strep titers. She said we may continue the abx for the 30 days if we chose to. He had no response for the first ten days, but on day 11 or so his symptoms began to rapidly improve. Again, his bloodwork had come back normal. I think if the infection was too far in the past it doesn’t show up on the bloodwork, although the misfired antibodies continue to attack the brain. The Cunningham Panel is what got the PANS diagnosis for my DS. With PANS, there are 3 things to address: the infection, the inflammation and the immune response. Robinhubb 1 Link to comment Share on other sites More sharing options...
ejh Posted July 3, 2019 Report Share Posted July 3, 2019 Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist? Robinhubb 1 Link to comment Share on other sites More sharing options...
Robinhubb Posted July 3, 2019 Author Report Share Posted July 3, 2019 26 minutes ago, ejh said: Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist? There is only 1 near me, he wants you to write him a reccomendation letter on why he should take you and 1st appt is over 1000 if he thinks your a good candidate. Im waiting to here froma nuerologist in katy . Dr doan. Link to comment Share on other sites More sharing options...
SuzanneR Posted July 3, 2019 Report Share Posted July 3, 2019 Are you located in Houston? I ask because I saw you mention Katy and I live in Houston. I have a 22-year-old daughter with PANDAS. It took me 12 years to get her diagnosed. Have you heard of the Cunningham Panel? Look it up on google. That’s how we finally got a diagnosis. wisdom_seeker 1 Link to comment Share on other sites More sharing options...
PandasDad Posted September 2, 2019 Report Share Posted September 2, 2019 Hi Maryangela, when you say high dose augmentin, what is the dose exactly? Link to comment Share on other sites More sharing options...
MaryAngela Posted September 3, 2019 Report Share Posted September 3, 2019 I don’t recall the dose because it was the liquid form. He took it 3x a day for 30 days. I believe it was the equivalent of 500mg 3x a day. DS was 11 at the time. When it was lowered to 2x a day, it stopped working. Link to comment Share on other sites More sharing options...
PandasDad Posted September 3, 2019 Report Share Posted September 3, 2019 thank you Link to comment Share on other sites More sharing options...
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