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OCD program at Rothman


mdmom
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Looks like we are headed to All Children's in FL this fall for the intensive OCD program. My DS15 seems pretty positive about it, but I have my doubts that he will buy into it. We have done years of CBT and he hasn't responded.

 

Anyone care to share their experience with this program, particularly with their teens?

 

TIA.

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We have done the program with all three of our PANS children. So obviously I think it is a wonderful program. The only one that we did not get the best results with was my oldest. He was 15. He was not really on board going into the program but started it because we insisted. He didn't make it through the first week. After the first few sessions he refused to go back. He is in denial that his eating issue is OCD and feels like he could "fix it" on his own if he wanted too. So, really that isn't a reflection of the program. My other two kids did great. My other son was 13 and my daughter 7 when they attended. We had great experiences with them both. It's all about being open to the ideas going in. I think we just waited too long with my oldest. Something I will always regret. I encourage anyone to do the program if possible. It is a huge help.

 

Dedee

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our 13 yo responded positively. we are so happy with how she has been since then.

we went this march. while we were there we had a psychiatry consult with one of the neuropsychiatry fellows. that was worth its weight in gold, too.

we have a pandas doc, but a fresh set of eyes is always good! they got her on augmentin 1000xr BID & increased her zithro. what a huge improvement that was!

great choice in going to Fl! best wishes to you and your son.

it was difficult, we also came from DC area, but again, totally worth it.

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MD mom-

 

Concur with Dedee. I think I was there right after her with my two daughters. They just have a handle on ocd that is unreal. I found our therapist and Dr Storch to be unflappable! Nothing surprised him- he has seen everything. He was tough- which is one of the ingredients that had been missing in our other therapists, and my kids weren't able to outsmart him :) The program was not only a HUGE help to my kids, but it was an amazing experience for me, gave me my power back as a parent (after losing it slowly with two years of pandas in two kids).

 

I cannot say enough about the program. I do think the kiddo has to be "somewhat" ready to do some work, however....

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Thanks everyone for the feedback. It is really helpful! I am more hopeful now that I've heard others' stories. I spoke with Dr. Storch on the phone myself a few times - he has a wonderful demeanor and nothing seemed to surprise him about my son's obsesssions.

 

Can anyone give me advice on where to rent a home? I know we can stay at the Ronald McDonald house, but I think we need more privacy than that would provide; also, we are counting our trip as our big vacation (we haven't taken one in 3 years). My kids are both on IV therapy (20+ infusions/week each) so we need room to spread out and relax.

 

I found a rental in St. Pete Beach that looks good and affordable. Where did you all stay during your visits?

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We stayed at the RMH and loved it.

 

However, St Pete's Beach is beautiful and not too far. We were there in August and there was no traffic at all (I am from the NE and used to lots of traffic). It was very easy to get around.

 

The drive to the Disney area is easy- so there is lots to do!

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Thanks everyone for the feedback. It is really helpful! I am more hopeful now that I've heard others' stories. I spoke with Dr. Storch on the phone myself a few times - he has a wonderful demeanor and nothing seemed to surprise him about my son's obsesssions.

 

Can anyone give me advice on where to rent a home? I know we can stay at the Ronald McDonald house, but I think we need more privacy than that would provide; also, we are counting our trip as our big vacation (we haven't taken one in 3 years). My kids are both on IV therapy (20+ infusions/week each) so we need room to spread out and relax.

 

I found a rental in St. Pete Beach that looks good and affordable. Where did you all stay during your visits?

can you tell me what tests you used to get Lyme and babesia diagnosis.? We used IGENIX. Western Blot was neg. for LYME. So we worked with a Lyme doc and my son was on Mepron and Augmentin XR and had such herxing he refused to continue. he got huge cyst on his body and warts. he also has an immune def and no protection to strep so gets low dose IVIG monthly. Are your children getting IV antibiotics for Lyme?

 

Thanks

 

Bordercollie

 

Looking forward to hearing from you.

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DS went a few years ago, 3 different times. It was helpful until the PANDAS got worse and needed to be treated medically more before more ERP. They are very good. I think you will see progress after. When my son turned 16 he was so severe that after 6 IVIG's and long term abx, he went to the OCD Institute for 5 weeks (you have to be 16 to go there) and they were excellent too.

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We were there for 3 weeks last summer. The therapy basis down to forcing the obsessive behavior trigger to be seen and then resisted. So the child must resist doing the compulsions.

The 1st day the Docs ask alot of questions. do you (talking to the child) do this, or that specific behavior, like toilet issues, eating issues etc. for an hour. Well several of the questions asked actually placed NEW compulsive ides and behaviors into our daughter's head. So we went to deal with issues A,B and C and left with B, C, and D. Had they never asked about the very detailed compulsive behaviors she was NOT doing, then our child would NOt have picked them up.

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