Joan Pandas Mom

Hi Ellie, Same situation with my 15 year old son. He is having his tonsills out on Tuesday. How is your daughter doing?

Hi Sarah, i am new to this. My son has had PANDAS for the last 6 years. Up until 2 months ago, we didn't know for sure. I know this is an old posting but what happened with the scan? How is your child doing now? Best Wishes, Joan

Hello, My name is Joan and my 15 year old son was diagnosed with OCD and PANDAS in 2005. Our pedi had just recently heard of PANDAS and felt that although Jared wasn't exhibiting any strept sysmtoms he would do a culture and ASO titer. His culture was positive and ASO 471. Over the last 6 years we have had horrible times of waxing and waining. We saw Dr. Geller in 2006. He recommended having his titer checked in times of exacerbation. We did. Once it was 257 and another time 221. I was told the titer wasn't really elevated enough to warrant an antibiotic. We now know this wasn't the case. We had gone to 4 intensive OCD treatments. Twice they worked for about 1 - 2 months then the symptoms were back. In October of this year I saw the symptoms exacerbating. I had to withdraw Jared from School 7 weeks ago because his symptoms were so severe. A friend told me about Beth Maloney on the Today Show. I took Jared in to have his ASO taken. It was 1,014. He has been on Augmenting 2,000 XR for 7 weeks now without any improvement. He is having his tonsills out Tuesday, thinking maybe that his the host for the strept. He also had a concussion about 10 weeks ago in football. We are having a MRI today. Have any of your children had MRI's. Have any of you had any luck with Azithromicin? Good luck to all of you.

Hi Faith, I will try to figure out how to start another thread. I will let you know what happens. My son is 15 and has had PANDAS and OCD for the past 6 years. I didn't know to recheck his ASO titer until 2006. During 2006 we checked it twice. It was once 257 and anther time 225. I was told it wasn't elevated high enough to warrant an antibiotic. I now know that wasn't correct. I had kind of given up on the PANDAS theory because of the doctors' response to the ASO titer being only slightly elevated. 7 weeks ago a friend told me about the segment on the Today Show with Beth Maloney. I took Jared in to Pedi and that's when we found out his titer was 1,014.

Thanks for responding Alex. I wasn't sure how this worked. How do I start my own thread? We were at UCLA last week for 2 weeks. CBT has worked with him in the past so I thought it might help. We had his ASO titer checked there and it is some # above 800 still. Their lab only goes as high as 800. The norm there is under 150, where is is under 200 here in New Hampshire where we live. I'm wondering if it is still up around 1,014 or higher. Jared's pedi is willing to switch to azithromycin but he isn't sure of the dosage. He didn't know if where it is a 5 day and then stays in the system for 5 days is it on 5 days then off 5 days? Thanks again for responding. He is so sick with this. I'm new to this and not sure I am doing this correctly. My son has been on 2,000 mg augmentin for 7 weeks without any results. His ASO was 1,014, 7 weeks ago. We are having his tonsils out on Tuesday. Has anyone tried Augmentin then switched to Azithromax? If so, How do you dose it? Has anyone taken more than 7 weeks to see results with Augmentin? I just discovered my son has a slightly elevated Billirubin. I have been told that it probably doesn't mean anything.

I'm new to this and not sure I am doing this correctly. My son has been on 2,000 mg augmentin for 7 weeks without any results. His ASO was 1,014, 7 weeks ago. We are having his tonsils out on Tuesday. Has anyone tried Augmentin then switched to Azithromax? If so, How do you dose it? Has anyone taken more than 7 weeks to see results with Augmentin? I just discovered my son has a slightly elevated Billirubin. I have been told that it probably doesn't mean anything.

I did. Beth is doing such a great job. She has help my son and me so much.