OBDad

Hello-- I can concur that it takes time. Our son was diagnosed by Dr. Latimer last May and received IVIG in early June. She warned us that it might take as long as 6 months for the IVIG to take effect. He has been on Augmentin since May and will continue it through the school year. His primary symptom was OCD and attachment anxiety. We couldn't take him to school because of his panic attacks. So we chilled last Summer after the treatment, and then to help him with re-entry to school in the Fall we started him on a low dose of an SSRI. We were reluctant but felt we needed to help him any way we could, and school is the best place for a 7 year old. It worked. The first few months were challenging, but I think the combination of the SSRI helping him build his confidence by making it through each school day, and the 6 months it took for the IVIG to kick in, led to him being able to go to school all day, alone, happily starting in December. Every child is different, but I can attest to the truth in that it takes time. Although dealing with Dr. Latimer can be frustrating, I believe in her judgement. Hope this helps. Don't stop looking and trying. All the best to you-- OBDad

I am so sorry to hear about your son's condition. We are going through a similar experience with our 6 year old son. Pediatricians were not helpful. We found Dr. Elizabeth Latimer in Bethesda, MD and she diagnosed him with PANDAS. He was treated 3 weeks ago with IVIG and is on Augmentin. There has been no improvement yet, but we remain optimistic. Also, the NIH is conducting an IVIG study this summer in Bethesda. You may qualify. Best of luck! OBDad

Hello-- My son, OB, was diagnosed on May 7 by Dr. Latimer in Bethesda with PANDAS. His seems to have stemmed from a Strep infection 8 weeks earlier. OB is 6 and his behavior changed overnight. The most dominate issue is severe separation anxiety. He simply couldn't stay at school. His anxiety grew to major panic attacks and after 6 weeks we finally withdrew him from school and all extracurricular activities. We were so relieved to meet Dr. Latimer and finally receive the diagnosis after weeks of doctor appointments with pediatricians and other practitioners that hadn't heard of PANDAS and questioned us. Living in Baltimore, many health practitioners are connected to Hopkins, and it turns out that Hopkins does not acknowledge PANDAS as a legitimate condition. Hmm. That was painful to learn. Dr. Latimer is impressive. Though our experience so far in dealing with her staff and trying to schedule OB's IVIG has been frustrating. They won't or can't seem to commit to a date in advance. They've called us twice in 10 days offering the very next day for treatment. We jumped at the second opportunity, which was yesterday, packed up the kids with supplies for a two day treatment in her office, and were pulling into the parking lot when the office called to tell us they hadn't received all the labs that were ordered and had to cancel. Then they promised to call by the end of the day with a new date, and they didn't. I'm still optimistic and believe in Dr. Latimer. But has anyone else experienced difficulty with her operation? Is it odd to not be able to schedule a procedure such as IVIG in advance? If there are any other recommendations for specialists in the Bethesda area or even practitioners that may complement the treatment, we'd be grateful. Thanks! OBDad