My 13 year old son Nicholas has been diagnosed with severe OCD possibly caused by PANDAS. I initially found out about PANDAS at a Psychiatrist's office. He asked my wife and I if our son had Strep throat recently. It was June 2015 but we mentioned that he had a very bad sore throat in December 2014. We said maybe. The doctor told us that in certain circumstances, Strep could lead to PANDAS caused OCD. Possible we thought but he needed to get us contact info so then he put our son on Lexapro (2.5 mg to start and then slowly bumped up to 15 mg). It became intolerable to him after about 6 weeks of build-up.
In the meantime, we received the contact info for PANDAS research at UCLA. We contacted them and they helped get our primary physician to test for Strep A. The test came back positive and we started a 10 day Amoxicillin routine (10 ml of 250 mg, twice a day) as directed by UCLA.Thus began an eventful 10 days.
We noticed a slightly better attitude for the first 2-3 days but then we hit the ER on the 6th day. My wife took him there after acting very erratic. They wanted to put him into a psych ward for 72 hours under the 5150 rule because he mentioned wanting to die. The psych ward is not where he wanted to go nor did we think it was in his best interest at this time. However, because in California, a non-psych hospital has the right to try to find someone to evaluate him and keep him in the hospital for 24 hours. If they don't get a psych evaluation in 24 hours, he is free to go. But if they find someone, chances are very good they will take and hold him.The OCD/PANDAS are very strong forces but we kept him under watch and his thoughts of hurting himself receded within a short time. Before going to ER, make sure you give enough time for the spells to subside, if they do not, head there ASAP.
One more dose of antibiotics and then switching to a new SSRI (Zoloft) shoudl help things. We will also start a prophylactic antibiotic and get tested again for Strep in a month.
We are having ups and downs like many of you are enduring or have endured. We try to keep things calm but he particularly wants my wife and I to be part of his rituals no matter how long or strange they can be. And sometimes standing painfully for 20-25 minutes without rest does not help things. We get angry, he gets angrier and louder with lots of profanity thrown in for good measure. I know he loves us but it is hard, really, really hard at times.
Anyone in Long Beach or Los Angeles area with good results for getting through this and coming out the other side whole again, please let me know.