Why there are not more Doctors Treating Pandas

[H Mom]

My DD12 was diagnosed with Pandas by Dr. K in February (after several years of misdiagnosis). She had IVIG with Dr. K in April. I also believe my son has it, but in a milder different form than my daughter. Although I respect Dr. K and believe he is the expert, it would be so nice to have a local Dr. who treats Pandas. I live in Houston with a top notch medical center, yet have not been able to find a Houston doctor to help us. Today I was at the allergist/immunologist with my son (for sinus infection) and asked him about Pandas. He was not familiar with it and spent some time on a medical website reading about it while I waited. When he finished, his first response was that it is very interesting but that because there is not a diagnosis code for insurance coverage that many doctors will not want to take the time to learn about it and treat it. I believe this is a good explanation for why there are not more doctors. What can we do to change this? I think of all the children who are being mis-diagnosed or untreated because insurance companies are not willing to recognize this is a real disease.

[Phasmid]

It is largely due to the position taken by the American Academy of Pediatrics. In their publication, The Official Journal of the American Academy of Pediatrics, PEDIATRICS Vol. 113 No. 4 April 2004, pp. 883-886, investigators published the following:

 

"Clinicians have been faced with much publicity and contradictoryscientific evidence regarding a recently described conditiontermed pediatric autoimmune neuropsychiatric disorders associatedwith streptococcal infection (PANDAS). It has been proposedthat children with PANDAS experience tics, obsessive-compulsivebehavior, and perhaps other neuropsychiatric symptoms as anautoimmune response to streptococcal infection. We review currentscientific information and conclude that PANDAS remains a yet-unprovenhypothesis. Until more definitive scientific proof is forthcoming,there seems to be insufficient evidence to support 1) routinemicrobiologic or serologic testing for group A streptococcusin children who present with neuropsychiatric symptoms or 2)the clinical use of antibiotic or immune-modifying therapiesin such patients. The optimum diagnostic and therapeutic approachawaits the results of additional research studies. ^"

 

^{And so, we await the official position to be changed, based on experimental research data. My son's pediatrician is data-driven in his approach to treatment. Until he sees an official statement by AAP, he's not budging. I am fortunate, however, to have a relationship with him such that I am able to "talk him into" trying things as long as they are not likely to cause harm. As far as IVIG, or other heavy therapies, he just won't do it.}

[peglem]

My DD12 was diagnosed with Pandas by Dr. K in February (after several years of misdiagnosis). She had IVIG with Dr. K in April. I also believe my son has it, but in a milder different form than my daughter. Although I respect Dr. K and believe he is the expert, it would be so nice to have a local Dr. who treats Pandas. I live in Houston with a top notch medical center, yet have not been able to find a Houston doctor to help us. Today I was at the allergist/immunologist with my son (for sinus infection) and asked him about Pandas. He was not familiar with it and spent some time on a medical website reading about it while I waited. When he finished, his first response was that it is very interesting but that because there is not a diagnosis code for insurance coverage that many doctors will not want to take the time to learn about it and treat it. I believe this is a good explanation for why there are not more doctors. What can we do to change this? I think of all the children who are being mis-diagnosed or untreated because insurance companies are not willing to recognize this is a real disease.

Well, If Dr. Cunningham is able to come up with a diagnostic test from her research, I would think that would go a long way towards changing the situation! Right now I think it can be billed under other insurance categories- post infectious encephalitis (what Dr. L uses), auto immune...there are threads about this somewhere!

[EAMom]

Have you seen this list? It has 3 Texas docs. http://www.latitudes.org/forums/index.php?showtopic=6428

 

Here is a 2nd list (from Beth Maloney's FB site---I don't know if anyone on this forum can vouch for these docs? I know there are folks on this forum that haven't liked certain other docs she recommends).

 

Dr. Charles Goebel (diagnoses but doesn’t treat)

Pediatric Specialists of Plano

3405 Midway Road Suite 650

Plano, TX 75093

(972) 473-7777

http://www.facebook.com/l/582dc;www.psopkids.com

 

 

 

Roger Skiles MD

http://www.stonebriarent.com/

Stonebriar Ear, Nose & Throat

5575 Warren Parkway

Suite 104

Frisco, Texas 75034

(469) 633 - 9595

Fax: (469) 633 - 9460

 

 

 

Debra Phelan, Ph.D.

Clinical Psychologist

12820 Hillcrest Road, Suite C218

Dallas, Texas 75230

(214) 848-2686

 

 

 

Dr. Bambi Hoefner

3275 West Alabama Street SUITE B

Houston, TX 77098

(713) 524-4477

 

 

Dr. David Owen, M.D.

Pediatric Neurologist

Medical City Dallas

7777 Forest Lane, Suite A307

Dallas, TX 75230-2507

972-566-8600

 

 

Dr. Seshagiri Rao, MD

Allergy, Asthma and Immune Disorders

3016 Communication Parkway, Suite 100

Plano, TX 75093-8906

972-964-7373

Edited May 11, 2010 by EAMom

[H Mom]

Thank you for your responses. Yes, there are other insurance codes than can be used to try to get coverage, but in my experience, they do not always work. Our IVIG was declined by Humana. I believe the Dr's are hesitant to research and diagnose until there is a specific code for Pandas. I am hopeful the Cunningham test will provide a definitive test and a actual diagnosis code for pandas.

 

I did speak yesterday with Quentin Collard, who is on the forum list of Texas Pandas Doctors (Houston). She was extremely nice to take time out of her day to talk with me. She said she believes in Pandas but does not really understand Pandas well enough to hold herself out as a Pandas Dr. She has one patient she is treating with antibiotics and seeing improvement. She said that the parents of the patient put her name on the forum and she receives many calls, but does not hold herself out as being able to treat Pandas patients.

[Laurensmom]

It is largely due to the position taken by the American Academy of Pediatrics. In their publication, The Official Journal of the American Academy of Pediatrics, PEDIATRICS Vol. 113 No. 4 April 2004, pp. 883-886, investigators published the following:

 

"Clinicians have been faced with much publicity and contradictoryscientific evidence regarding a recently described conditiontermed pediatric autoimmune neuropsychiatric disorders associatedwith streptococcal infection (PANDAS). It has been proposedthat children with PANDAS experience tics, obsessive-compulsivebehavior, and perhaps other neuropsychiatric symptoms as anautoimmune response to streptococcal infection. We review currentscientific information and conclude that PANDAS remains a yet-unprovenhypothesis. Until more definitive scientific proof is forthcoming,there seems to be insufficient evidence to support 1) routinemicrobiologic or serologic testing for group A streptococcusin children who present with neuropsychiatric symptoms or 2)the clinical use of antibiotic or immune-modifying therapiesin such patients. The optimum diagnostic and therapeutic approachawaits the results of additional research studies. ^"

 

^{And so, we await the official position to be changed, based on experimental research data. My son's pediatrician is data-driven in his approach to treatment. Until he sees an official statement by AAP, he's not budging. I am fortunate, however, to have a relationship with him such that I am able to "talk him into" trying things as long as they are not likely to cause harm. As far as IVIG, or other heavy therapies, he just won't do it.}

 

Very disheartening. My daughters ped mentioned this study recently when I inquired various testing. She was very open to the PANDAS theory at one time.

[7upMom]

My DD12 was diagnosed with Pandas by Dr. K in February (after several years of misdiagnosis). She had IVIG with Dr. K in April. I also believe my son has it, but in a milder different form than my daughter. Although I respect Dr. K and believe he is the expert, it would be so nice to have a local Dr. who treats Pandas. I live in Houston with a top notch medical center, yet have not been able to find a Houston doctor to help us. Today I was at the allergist/immunologist with my son (for sinus infection) and asked him about Pandas. He was not familiar with it and spent some time on a medical website reading about it while I waited. When he finished, his first response was that it is very interesting but that because there is not a diagnosis code for insurance coverage that many doctors will not want to take the time to learn about it and treat it. I believe this is a good explanation for why there are not more doctors. What can we do to change this? I think of all the children who are being mis-diagnosed or untreated because insurance companies are not willing to recognize this is a real disease.

 

Personally I have had the hardest time with allergist/immunologist depts here with even talking about Pandas and then with a correct treatment of Pandas. I am not sure if it has just been coincidence or if others are finding this but we have found the doctors most willing to be open, research and help us are young ( exception Dr K who I will just call very young at heart ( : )

My son also had IVIG in April - how are the results you are seeing for your daughter from IVIG?

[justinekno]

I read in a magazine once that it's actually better to see a younger dr even though we tend to think an older one would be wiser and more experienced. The article went on to say that younger dr's are more open to new research and ideas. Hmmm.

 

Personally I have had the hardest time with allergist/immunologist depts here with even talking about Pandas and then with a correct treatment of Pandas. I am not sure if it has just been coincidence or if others are finding this but we have found the doctors most willing to be open, research and help us are young ( exception Dr K who I will just call very young at heart ( : )

My son also had IVIG in April - how are the results you are seeing for your daughter from IVIG?