Help Need Neurophychiatrist In Maryland or surrounding area

[Joshs_Mom]

I was given Dr. Latimer but she does not take our insurance. Is there anyone else that someone can recommend in the Maryland, VA DE area? I will travel for a respected/recommended doctor. I am just at a loss of where to go. I want someone who knows about PANDA and won't dismiss it. Thanks!

[reactive]

I was given Dr. Latimer but she does not take our insurance. Is there anyone else that someone can recommend in the Maryland, VA DE area? I will travel for a respected/recommended doctor. I am just at a loss of where to go. I want someone who knows about PANDA and won't dismiss it. Thanks!

Hi Josh's mom:

 

I replied to your first post this past weekend. I still stand by what I said before about getting to one of the specialists if you can; even if you need to pay for the visit yourself. If you can verify the diagnosis...and get somewhat of a plan, you could take that information back to your physician who first mentioned PANDAS and collaborate on the follow up care.

 

I know it is easy for me to say, pay over $300 for a visit, but we have dealt with a lot of stuff over the last 5 years and I have really good health insurance, but some of my son's issues have not been covered, as I said in my earlier answer to your first post. Your insurance may not do this, but my insurance will not cover anything related to developmental delay; and if yours is the same, and since your son is 6, you may have some of those issues too since he is in early elementary. That $300 or so visit with one of the big three COULD save you a lot of money in uncovered visits and copays later...trust me.

 

I have not yet seen Dr. K, we are preparing, but this is what I have been doing: I have been securing all old records (you may not have as many since your situation is recent). I have tried to read as many posts on here and info on PANDAS network. Dr. K wanted my ds9 to have antiDNas B titer done as he has never had in the last 5 years, he has only had 3 ASO titers; one elevated and 2 not elevated; so I got the ped to order it and had it drawn. I also have an appt with the neurologist who first told me about PANDAS to let him know what we are doing. Also, after reading all the posts and PANDAS network I am taking my son to see an immunologist this Friday and I found a list on a prior post on what labs to ask for. The immunologist is the only specialty we have not yet seen.

 

I am doing all of this ahead of time before seeing Dr. K so I have everything I need and am doing all this with providers under our insurance and having labs done at our facilities. It should make our visit with Dr. K more complete. Imagine if you do go to see Dr. L and she orders all of this stuff; and then she wants you to come back again for follow up later or a phone consult. It could save you time and money to do a lot of this ahead of time. Can you see the doctor who first told you of PANDAS and ask for some of this testing?

 

Sorry this is so long. But I really think after 5 years of living with this in our family seeing one of the big 3 is the only way to go. My opinion, of course. But, our ped and neurologist believe in PANDAS, but they do not know how to treat it. Plus the neurologist may have drawn our initial ASO titer 5 years ago at the wrong time, I have just now learned. We have not planned on doing the CAM kinase II test, we are not sure about that, I may quickly ask Dr. K his opinion before we go, Dr. K only wanted the antDNas B titer....

[peglem]

We just saw Dr.L in January. Initial appointment is $580. She does not take anybody's insurance, but from what I hear, she does get treatment at Georgetown covered. We returned home for IVIG treatment, so don't personally have experience with treatment at Georgetown.

 

I agree w/ reactive about getting all the labs and stuff before you see a PANDAS expert.

[familyof4]

I can say that we have spent hundreds seeing doctors that do believe in PANDAS but don't have the knowledge or experience to treat it. At this point, even if not covered by insurance, I think we will be money ahead seeing one of the top specialists to get a concrete diagnosis and treatment plan.

 

Additionally, it may work to your advantage to call your insurance company and talk with them. If they can not come up with a suitable doctor within your plan that has experience treating PANDAS you might get them to cover your visits to a doctor not typically covered. It worked for us when we were trying to find a pychiatrist.

[Joshs_Mom]

I was given Dr. Latimer but she does not take our insurance. Is there anyone else that someone can recommend in the Maryland, VA DE area? I will travel for a respected/recommended doctor. I am just at a loss of where to go. I want someone who knows about PANDA and won't dismiss it. Thanks!

Hi Josh's mom:

 

I replied to your first post this past weekend. I still stand by what I said before about getting to one of the specialists if you can; even if you need to pay for the visit yourself. If you can verify the diagnosis...and get somewhat of a plan, you could take that information back to your physician who first mentioned PANDAS and collaborate on the follow up care.

 

I know it is easy for me to say, pay over $300 for a visit, but we have dealt with a lot of stuff over the last 5 years and I have really good health insurance, but some of my son's issues have not been covered, as I said in my earlier answer to your first post. Your insurance may not do this, but my insurance will not cover anything related to developmental delay; and if yours is the same, and since your son is 6, you may have some of those issues too since he is in early elementary. That $300 or so visit with one of the big three COULD save you a lot of money in uncovered visits and copays later...trust me.

 

I have not yet seen Dr. K, we are preparing, but this is what I have been doing: I have been securing all old records (you may not have as many since your situation is recent). I have tried to read as many posts on here and info on PANDAS network. Dr. K wanted my ds9 to have antiDNas B titer done as he has never had in the last 5 years, he has only had 3 ASO titers; one elevated and 2 not elevated; so I got the ped to order it and had it drawn. I also have an appt with the neurologist who first told me about PANDAS to let him know what we are doing. Also, after reading all the posts and PANDAS network I am taking my son to see an immunologist this Friday and I found a list on a prior post on what labs to ask for. The immunologist is the only specialty we have not yet seen.

 

I am doing all of this ahead of time before seeing Dr. K so I have everything I need and am doing all this with providers under our insurance and having labs done at our facilities. It should make our visit with Dr. K more complete. Imagine if you do go to see Dr. L and she orders all of this stuff; and then she wants you to come back again for follow up later or a phone consult. It could save you time and money to do a lot of this ahead of time. Can you see the doctor who first told you of PANDAS and ask for some of this testing?

 

Sorry this is so long. But I really think after 5 years of living with this in our family seeing one of the big 3 is the only way to go. My opinion, of course. But, our ped and neurologist believe in PANDAS, but they do not know how to treat it. Plus the neurologist may have drawn our initial ASO titer 5 years ago at the wrong time, I have just now learned. We have not planned on doing the CAM kinase II test, we are not sure about that, I may quickly ask Dr. K his opinion before we go, Dr. K only wanted the antDNas B titer....

 

Thank you so much for you input. I will do just that. My husband I discussed it and if I didn't get recommendations for another doctor- we feel it is definitely worth the money to see her. So we will stay with her and see where it goes. I am going to call our pediatrician to get blood work done. Thanks so much!!! God bless.

[Joshs_Mom]

I can say that we have spent hundreds seeing doctors that do believe in PANDAS but don't have the knowledge or experience to treat it. At this point, even if not covered by insurance, I think we will be money ahead seeing one of the top specialists to get a concrete diagnosis and treatment plan.

 

Additionally, it may work to your advantage to call your insurance company and talk with them. If they can not come up with a suitable doctor within your plan that has experience treating PANDAS you might get them to cover your visits to a doctor not typically covered. It worked for us when we were trying to find a pychiatrist.

 

 

Thanks I will try that and call the insurance company. Never hurts to try. Thank you!!

[dcmom]

Josh's mom-

 

I know it hurts, but none of the doctors that will help you with pandas take insurance. I am in DC, and none of the good doctors her take insurance. Dr Latimer's office will submit for you, and if you are eligible you will be reimbursed at the out of network rate.

 

I have to tell you it is so worth it to see her. You will have to bite the bullet and pay.

 

I am sorry to be blunt- but you and I are so fortunate to be local- most of the parents on this board fly across the country to see their pandas doc, and pay out of network.

 

Her follow up visits are much less than initial consult- she spends A LOT of time with you, and if it is pandas, will help you to get results. Hopefully you won't need too many appts.

[T_Mom]

We saw over 16 doctors in the DC area in the past two years--Dr. L is the Only one that had a handle on Ps.

DCMom is correct--Dr L will know what you are going through, understands the situation, and will treat according to your individual situation.

 

Be assured, you will spend more money in the end trying to "clean' up the mess Ps leaves if you don't get help in a timely and effective manner from someone that knows what they are doing--