Need Advice!

[Bio and adopt]

I live in VA and have a 15YO and 20YO with PANDAS. Back in Aug we began working with a very knowledgeable PANDAS Dr. out of State by phone. They agreed kids had PANDAs and started running bloodwork and prescribed antibiotics. We paid this Doc several hundred dollars to help with their treatment. The Doctor was quick to accept them as patients but since has become almost none existent . I have talked to them on the phone about five times three of which were very short. Each time they would schedule a call time and if they called it would be hours late or rescheduled. I always made sure to have all information they needed ready for phone consults to use as little of their time as possible. I am very conscious of the fact that their time is very expensive and have not used nearly their time I have paid for. I have sent many emails and left many messages with no returns. I am not sending emails or leaving messages about anything other than trying to reschedule a phone consult appt. the doctor set and never called that was Sept 20. The one email they did respond to I had summarized all of my attempts to contact them with no response and offered if they did not want to continue to treat my kids to just let me know. They did reply to that email with an apology and said they were busy and did want to continue to treat my children. They said they were trying to do better with communication. Unfortunately nothing has changed. (Sorry for long explanation)

 

My question is what do I do? We have spent a lot of money with this doctor and cant afford to pay to start with new doctor. Because docs are out of state my insurance will not pay and I have been unable to find anyone local to help. FRUSTRATED!!!!!!

[dcmom]

I am sorry for your frustration- and will be interested to see what advice you get.

 

Was your payment for the initial consult? In reality a few hundred dollars probably covers one phone consult.

 

While it is not fair that you paid money, and are not getting what you seek, I am going to give you some "tough love".

 

Unfortunately, most of our pandas docs are fabulous at diagnosis and treatment- some (I think) take on more than they can handle (with good intentions). This is just a fact, that probably won't change.

 

I do think that probably the docs should not take on patients that are phone consults. There are a few hard realities: it is a REALLY hard illness to clearly diagnose, and treat successfully- I just do not think it can be done properly only on the phone. Even as a parent, if the doc was willing- nothing can replace an exam, and a face to face meeting. The other reality of their day is that they run late- and a patient with parents sitting in front of them in the office will always take precedence to a phone call.

 

I think, if there is ANY possibility, you should try to seek a pandas doc in person.

 

I am not trying to be harsh- I just hate to see you waste time being frustrated with the doc, when you need all of your energy for your kids.

 

Where do you live in VA? Maybe someone could suggest a local doc?

[Phasmid]

I know that doctor of whom you speak and it would be in your/your children's best interest to find a doc closer to home.