trying to chose a doctor

[chase23]

Hi again everyone, sorry just looking for some additional input. I am located in NJ, looking for input regarding scott smith as well as dr B. I am sort of confused about scott smith. Is he someone I would use for primary PANDAS care, or he is more like an additional support person to have in the arsenal. In other words would i see just him or would he be better used in conjuction with one of the four big docs I see mentioned here. My daughter is presently just struggling with pandas, no other conditions. but her recent exacerbation was pretty rough and i'm not sure dr nicholaides is going to do anything by augmentin, not sure we are even at a high enough dose. not to mention the fact that she has never addressed the role that myco p is playing. my daughter has had it twice since this all began 2 years ago. any input would be great

[dcmom]

Hi chase-

 

Sorry you are dealing with this I am in NJ also- where are you, and do you know about the support group that meet in the Menlo Park area once a month (I don't get there often myself)?

 

We don't see Scott Smith or Dr B- so I can't advise you firsthand, but what I would recommend, if finances allow, is to see both. We have a relationship with 2 pandas docs, because I think it is really important to be able to aggressively treat a new flare up immediately. I feel I cannot risk not being able to get a response from a doc within 24 hours, so I don't put all of my eggs in one basket, so to speak. It would probably be helpful for you to have Scott locally. I am not sure of his protocol, have heard he will do IV steroids (low dose) and maybe IVIG. Dr B seems to typically do multiple IVIG's and definite testing for different infections and immune deficiencies. Dr B seems to take most insurance, Scott Smith doesn't take insurance.

 

How old is your daughter? I have two daughters with pandas.....

[chase23]

Hi, I am located in burlington county, I haven't been able to get to any support meetings. My daughter will be 5 in feb. Thanks so much for your feedback, may I ask who you see since you are in NJ? I think I am likely going to make both appointments, curious if anything besides antibiotics will help her. I'm really ready to leave my current doc for multiple reasons, time to see what else we can do!!

 

 

Hi chase-

 

Sorry you are dealing with this I am in NJ also- where are you, and do you know about the support group that meet in the Menlo Park area once a month (I don't get there often myself)?

 

We don't see Scott Smith or Dr B- so I can't advise you firsthand, but what I would recommend, if finances allow, is to see both. We have a relationship with 2 pandas docs, because I think it is really important to be able to aggressively treat a new flare up immediately. I feel I cannot risk not being able to get a response from a doc within 24 hours, so I don't put all of my eggs in one basket, so to speak. It would probably be helpful for you to have Scott locally. I am not sure of his protocol, have heard he will do IV steroids (low dose) and maybe IVIG. Dr B seems to typically do multiple IVIG's and definite testing for different infections and immune deficiencies. Dr B seems to take most insurance, Scott Smith doesn't take insurance.

 

How old is your daughter? I have two daughters with pandas.....