Joan Pandas Mom

The OCD Institute at McLean's in Belmont, MA is opening a Children's and Adolescent program in the Fall. The OCI Institute is amazing. As most of you know, Dr. Jenike and Diane Davey run it. I waited years until my son turned 16 to get him into the adult program. They were the final piece of the puzzle to my son's recovery. I wish they had a child/adolescent program when DS was younger.

My son has been taking 10 mg of Namenda for 3 years now, but he was 16 when he started. It seems to have helped. He was starting to get better when he started taking it. I don't know if it contributed or not. I think it works in conjunction with the SSRI's--not sure about that though. I know there is alot of controversy about SSRI's and PANDAS. DS is on a very low dose of Zoloft too. I think what helped him the most was the T&A, long term abx, 7 ivig's, 5 weeks thereapy at the OCDI and low dose zoloft, namenda and zyprexa. Again, he was older when he started it. If he were younger I think I would have exhausted all the medical treatments first. It's a tough decision.

Are the Western Blot tests ordered by PCP a complete waste of time?

Thanks so much for your posts and your well wishes. The info is very helpful. We ended up being exempt for Religious reasons. I am a little worried about him getting the chicken pox as an adult. Last week, I showed my son a video of when he was really sick with PANDAS 3 years ago. His face dropped as he watched it-- almost in disbelief. He asked me to send it to his e-mail too so he could look at it as a reminder when he starts to feel anxious. PANDAS kids forget how sick they were.

Does anyone have a Lyme Lit. doc in NE that treat adults? I live in NH and would travel to a few other states too. Thanks

Hi. My son had incapacitating PANDAS/OCD, SC for many years. Sadly, like most of the kids on here, he was very, very sick. We worked so hard for many years to get him well. Travelled all over the country many times, 7 ivig's, T&A, long term ABX, and 5 weeks at the OCDI. He is 98% cured now! Thank God! He is attending college in the fall and they are requesting a 2nd varicella vaccine or a doctor's note. We haven't seen a PANDAS doc in a few years and it would probably take a few months to get in. Anyone have any suggestions? He had a febrile seizure at about 10 months after his MMR vaccine. I really don't want to risk giving him the vaccine and having a reaction. Thanks for any help.

My son had 7 IVIG's total. Back in 2010 & 2011 he was incapacitated with PANDAS. He couldn't attend school, couldn't talk, barely ate,Lost 40 lbs in 3 months, took hours to get out of the house, etc. It took a long time for the IVIG's to work. He did get ALOT worse before he got better. I'm so grateful for all the Dr.'s that treat PANDAS and PANS. They are all truly amazing. When Dr. L prescribed HD IVIG every 4 weeks is when we started to see really good results. He also did 5 weeks at the OCD Institute at McLean's--great, great place. Dr. Jenike and his staff are amazing. He is 100% back and graduating from High School this May. He got High Honors last year. He is going to college in the Fall. Hang in there. IVIG's do work.

The OCDI in Belmont, MA is an amazing place. It is a residential program. My son had long term abx, 7 ivig's and 5 weeks at the OCDI. He is 95+% recovered. You will get there--don't give up hope.

I would STRONGLY recommend the OCDI. My son had 5 of the total 7 IVIG's before going there for 5 weeks. He was still extremely ill when he went. I think the IVIGs and long term abx set the stage for successful treatment. Dr. Jenike and the staff there are amazing. My son was put on Zyprexa and Zoloft too. Also, lots and lots of prayers! I'll have to check the website out. Thanks. He is an athlete but not baseball. He probably was one of the youngest. They are an amazing facility.

That is a great idea. She is wonderful.

I'm in NH. When I called Sen. Lovely's office, they said I still could speak at the hearing. Could you write an e-mail to her office with your story? Are you close enough to attend? Thank you so much.

Hi. There will be two upcoming proposed legislation relevant to PANDAS brought to Senator Lovely's Office regarding PANDAS. Bill Title:An Act designating PANDAS/PANS Awareness Day Bill:#H2882 Committee Assignment: Joint Committee on State Administration and Regulatory Oversight Contact Number: 617-722-2140 And An Act relative to insurance coverage for PANDAS/PANS, Bill #H984, Joint Committee on Financial Services, contact # 617-722-2220. I called the office to see when the public hearing is set. It wasn't set as of 4/8/13. I am going to try to go and share our story. If you can, PLEASE write or call Senator Lovely with your story. If you can, please attend the hearing. Maybe someone can get on the floor and speak. Imagine if these pass and more families will have coverage for PANDAS. WOW!

Hi my son had 7 total IVIG's 1 every 4-6 weeks is what did the trick with long term abx and treatment at the OCDI in Belmont, MA. He was 16 at the time and had had untreated PANDAS for 6 years prior. He is 95% back and doing great now. Was completely incapacitated for over a year. He could not leave the kitchen most of the day. He missed his entire Sophomore year. He is a Junior now and made High Honors last semester! Thank God.

Does anyone know what has been happening with Elizabeth Wray?

Hi Ds Mom. I think all of them are so great and I am so grateful for them, but I found Dr. L's approach of High Dose IVIG's every 4 weeks for 6 months to be the most effective for my son who suffered from severe PANDAS. I think you are right, she doesn't do phone consults. I remember that wait for the IVIG to "kick in". IVIG's made my son MUCH worse, but eventually they worked. I think the PANDAS system responds to IVIG in the same way it responds to strep or other infections entering the body. Eventually, IVIG wins. DS also needed long term Augmentin and 5 weeks of intensive ERP treatment at the OCD Institute. I know it is very, very difficult right now but try not to get discouraged. PANDAS kids do get better. You will persevere.