PANDAS Parents

[Anonymous]

My DD is seeing Dr. Latimer, who suspects Pandas or Pans. Although the initial blood tests did not show strep ( perhaps she had strep long ago and that's why it doesn't show up in the blood test) , the Cunningham Panel did show high levels of the antibodies they test. We've tried Antibiotics ( didn't seem to help), and 2 weeks on Stimulants, which we need to repeat. If your child was treated for Pandas, with IVIG or other, how helpful was the treatment? Did it help not only with the OCD symptoms or did it help in other areas? MY child is considered a mild case. Please share as much as you can about your experience.

Thank you!

[Anonymous]

You really should be talking to your doctor regarding the results.

I would seriously consider getting a second opinion if the antibiotics did nothing regarding the OCD behaviors. Maybe it is OCD and not PANS? Have you consulted with a behavioral therapist.

[Anonymous]

Our child had mild case as well. Eye twitching. We saw dr latimer. Our DD had her tonsils and Adnoids removed at Georgetown and never had another episode of the eye twitching and that was 4 years ago. So grateful to Elizabeth Latimer!

[Anonymous]

Did you see improvements in other areas, or did she just have eye twitching? Thank you.

[Anonymous]

Anonymous wrote:Did you see improvements in other areas, or did she just have eye twitching? Thank you.

NP here. Did Dr. Latimer explain the connection between the tics and the removal of adenoids and tonsils? I had heard this before.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Did you see improvements in other areas, or did she just have eye twitching? Thank you.

NP here. Did Dr. Latimer explain the connection between the tics and the removal of adenoids and tonsils? I hadn't heard this before.

[Anonymous]

The idea is that strep, which can cause neurological problems, colonized in the tonsils and aednoids..

[Anonymous]

Parents, there is a 2-day MedStar conference in Georgetown on October 15-16 for physicians as well as PANDAS/PANS parents. Latimer is one of the course directors. I'm not sure how much space is left to register, though, as I know there was a lot of interest when registration opened. Here's the course description and the link to view agenda/speakers and to register:

The diagnosis and treatment of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) remain important challenges in pediatric medicine as children continue to suffer from the debilitating symptoms of both disorders. These challenges are met with radiologic imaging and streptococcus surveillance for early diagnosis, both reviewed at this conference. Medical and surgical therapies discussed at this conference will include deep brain stimulation, tonsillectomy, and behavioral therapy. Additionally, continuing and novel research will be presented, including a review of tonsil culture, cytokine, and animal model studies.

This conference strives to present these topics in an organized, concise, and complete manner to educate physicians who may encounter children suffering from PANDAS/PANS.

http://www.medstarhealth.org/education/continuing-medical-education/medstar-washington-hospital-center/upcoming-cme-meetings/pandaspans-2016-an-update-on-current-management-and-new-treatment-strategies/#q={}

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Did you see improvements in other areas, or did she just have eye twitching? Thank you.

NP here. Did Dr. Latimer explain the connection between the tics and the removal of adenoids and tonsils? I hadn't heard this before.

NP here. Latimer has her own study going on the connection between colonized tonsils and strep/PANDAS. My DS had his tonsils and adenoids removed at her recommendation.