PANDAS Dose Question

[emma1]

My daughter is 16 and has a PANDAS-like disorder. Antibiotics dramatically help, as I have written. We have tried amoxicillan (75 percent better) and augmentin (99 percent better). Both of these were full dose, not low dose.

 

We are now on Pen VK 250 mg twice a day, and I am seeing symptoms again. I am unsure whether she is on the wrong antibiotic OR whether the dose is too low OR whether I am expecting too much for all symptoms to be gone. She takes an adult dose for most meds.

 

Our doctor does not have a clear recommendation at this time.

 

When I see symptoms, I worry about the attack on her system/brain, and I seriously, seriously worry about permanent damage.

 

Any advice would be so appreciated. I have been able to hold it together until now, but right now I feel just miserable. I am a little afraid to keep calling our doctor all the time because he has been supportive, and based on some stories here, I am afraid he is going to refer me to another doctor who decides antibiotics are not the way to go, which would be just devastating. (Sorry for the whining)

 

I know zithromax seems the way to go, but that is the one drug my doctor seems opposed to giving us.