PANDAS

[Anonymous]

Have not been impressed with Dr Latimer. Spent 15-20 mins with my child and the charge was $900. And the outcome was antibiotics and steroids-nothing earth shattering. Follow up appointments are $475! And her office said she is gone for the next month plus and have no update on when she will be back. They were offering follow up appointments with the nurse, whom I am sure is very capable, but at $475 a visit, I really would like to see a dr.

[Anonymous]

Echoing above; posterr above is probably accurate in assessment of the Latimer situation. She can be a tremendous help for some, but there are issues with that office.

[Anonymous]

Agree there are issues with the office. If you just see the nurse, would they really charge the same as seeing the doctor? You could go in, and she likely will communicate with Dr. Latimer and perhaps change the meds.

I'd also consider Duke--have heard good things about their program.

[Anonymous]

Anonymous wrote:Have not been impressed with Dr Latimer. Spent 15-20 mins with my child and the charge was $900. And the outcome was antibiotics and steroids-nothing earth shattering. Follow up appointments are $475! And her office said she is gone for the next month plus and have no update on when she will be back. They were offering follow up appointments with the nurse, whom I am sure is very capable, but at $475 a visit, I really would like to see a dr.

This is what happens when you seek out a practioner with a cult following who is the "only one who treats this condition properly" according to reputation. You should take it as a strong signal to broaden your support system of medical professionals. Not saying that your kid doesn't have PANDAS, or that Dr. Latimer isn't an expert. Just that you should also be seeking the care of mainstream practitioners, like the neurologists at Childrens or KKI, as well as your pediatrician.

[Anonymous]

I wouldn't say she has a cult following, but she is really the only doctor in this area outside of the NIH who deals with PANDAS. You will not get anything out of KKI or Children's on this. Most pediatricians know little about PANDAS or know about but just refer you on to her (as, for example, our pediatrician did).

Latimer is definitely very mainstream--pediatric neurologist at Walter Reed and Georgetown for years before going into private practice.

One thing PP might try is calling the NIH PANDAS program to see if they can give her some advice. I also suggest she join latitudes.org and ask posters on there from this area their suggestions for further help.

[Anonymous]

I don't think its accurate to say Dr. Latimer has a cult following. She has people who love her but also very strong critics. Not dissimilar to others in the special needs world, like Dr. Shapiro etc...

[Anonymous]

Anonymous wrote:I don't think its accurate to say Dr. Latimer has a cult following. She has people who love her but also very strong critics. Not dissimilar to others in the special needs world, like Dr. Shapiro etc...

Right, "cult" was too strong a word, sorry. What I meant is that when people say "there is just the ONE person who you have to see!" I think that can cause problems. Same with placing all your hopes in Dr. Shapiro.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I don't think its accurate to say Dr. Latimer has a cult following. She has people who love her but also very strong critics. Not dissimilar to others in the special needs world, like Dr. Shapiro etc...

Right, "cult" was too strong a word, sorry. What I meant is that when people say "there is just the ONE person who you have to see!" I think that can cause problems. Same with placing all your hopes in Dr. Shapiro.

Well, she is the one conventional doctor in the area who deals with PANDAS (excepting of course the NIH). I know from experience you definitely can get her on an on day or on an off day. If ENT issues are involved there is Dr. Harley at Georgetown but beyond that I know of no one in the immediate area. I suppose there are unconventional medical sources but know nothing about them, and not everyone is willing to go down that path.

[Anonymous]

I'm with the PP who stated that it's bad when one dr gets the rep for being the 'go-to' and end all. am always wary of drs that cost an arm and a leg and don't take insurance. I feel they are preying upon my hope. her treatments are pretty standard (except for the intravenous treatment, which is intense) and other drs can prescribe antibiotics and steroids for $40 as opposed to almost $2000 after the lab work that is also out of pocket and costs more than $900. She and Dr Harley work closely, and they had discussions of taking our child's tonsils out before even examining DC! We are just looking for someone who doesn't jump to conclusions, performs an exam on our child and is knowledgeable. Still searching for that person.

[Anonymous]

The problem is that most PANDAS cases are mild and pretty garden variety but peds either don't know how or refuse to treat. These mild cases could be cleared up with six weeks of antibiotics rather than the two weeks most peds are willing to give.

And because the peds won't do that in most cases, people are left with the Dr, Latimers, who should be handling just the really tough cases.

It is amazing to me that there are people out there who argue against the extra month of antibiotics and believe it's better to put the child on SSRIs or heavier duty drugs and have them wait for four to six months to be able to get into an opening at a CBT place and once you are in to schlep them back and forth from there twice a week and do homework that requires the parent to confront their child with what he fears most.

[Anonymous]

Anonymous wrote:Have not been impressed with Dr Latimer. Spent 15-20 mins with my child and the charge was $900. And the outcome was antibiotics and steroids-nothing earth shattering. Follow up appointments are $475! And her office said she is gone for the next month plus and have no update on when she will be back. They were offering follow up appointments with the nurse, whom I am sure is very capable, but at $475 a visit, I really would like to see a dr.

She was in a very serious car accident last month

[Anonymous]

Had not heard about her car accident--so sorry to hear that. Her family has had its share of tragedy.

[Anonymous]

Anonymous wrote:The problem is that most PANDAS cases are mild and pretty garden variety but peds either don't know how or refuse to treat. These mild cases could be cleared up with six weeks of antibiotics rather than the two weeks most peds are willing to give.

And because the peds won't do that in most cases, people are left with the Dr, Latimers, who should be handling just the really tough cases.

It is amazing to me that there are people out there who argue against the extra month of antibiotics and believe it's better to put the child on SSRIs or heavier duty drugs and have them wait for four to six months to be able to get into an opening at a CBT place and once you are in to schlep them back and forth from there twice a week and do homework that requires the parent to confront their child with what he fears most.

Well, I can only assume that if there were a solid evidence base for six weeks of antibiotics, then more pediatricians would be open to prescribing it. As it is, it seems like it's not a fully accepted course of treatment or theory, so that's why pediatricians won't prescribe it. Antibiotics have their own set of risks!