Intensive treatment programs for CBT?

[lmkmip67]

I have heard mention of a few intensive CBT programs around the country. I know in FL there is a 3 week one. But I saw mention of a 1 week one in MN? Does anyone have any info on that program? Also any other programs around the country, say in New England/Boston area? I think this could be of great help to Ian at this stage...

 

Thanks so much!

 

Lisa

[MomWithOCDSon]

Sorry, not aware of one in Minnesota. Could it be the Rogers Memorial Hospital program in Oconomowoc, Wisconsin you're thinking of?

 

Yes, the one at USF in Florida is supposed to be excellent, too.

 

I don't know of a specific program in New England, but with both Drs. Jenike and Geller being at Mass General and their new focus on PANDAS there, you would think they might have a program or be starting one up soon?

 

You can check the IOCDF web site for therapy of all ilks: local CBT therapists, intensive programs, outpatient clinics, etc.

 

IOCDF - Find Help Page

 

Good luck!

[lmkmip67]

I found it! This one would work so great because I could stay with my BF or my Aunt for the week with Ian. It talks about a week long, 10 hours a day, program.

 

http://www.ocfoundation.org/uploadedFiles/Intensive_Treatment_Programs/Minnesota%20-%20Stephen%20Whiteside.pdf

[MomWithOCDSon]

I found it! This one would work so great because I could stay with my BF or my Aunt for the week with Ian. It talks about a week long, 10 hours a day, program.

 

http://www.ocfoundation.org/uploadedFiles/Intensive_Treatment_Programs/Minnesota%20-%20Stephen%20Whiteside.pdf

 

Ah, at Mayo! Guess that makes sense, given their depth of expertise and treatment on so many health issues. I haven't ever spoken with or met anyone who's attended that program, but perhaps someone else here has and can chime in.

[lmkmip67]

Yes, my BF is has worked there since she graduated nursing school, some 2o+ years ago. So I am not surprised. I have been in contact with the man that runs it and am going to keep the program on the back burner. I am currently looking for options locally, but I don't think there are any intensive treatment options for kids like that around here. We are on the waiting list with a child psychologist that treats OCD, our last one really seemed useless to me. It sounds like some stuff is going on at Mass General so I am going to try and figure that out. With all of our medical around here in Boston I would think we should be a hub of PANDAS treatment. I will be keeping the MN program in mind though, maybe for later next year. Ian may not be quite old enough for it, as he is very impulsive and has trouble focusing.

[minimaxwell]

Dr. Geller suggested the OCDI last spring for my daughter who was 16 at the time. (before we knew it was PANS) Dr. Jeninke was her Dr for 7 weeks. At the time Dateline NBC/Dr. Nancy Snyderman was going to be doing a one hour medical documentary on Drew and the OCDI. ( I think this is why Dr. Jenike was assigned to her.) We started filming but then the earthquake in Japan happened and all of Dateline's resources went to Japan. They asked us if we would postpone her treatment but we said no. Sooo.. off she went to OCDI. There was a time there where she got much worse, looking back it all makes sense. There were 6 people on her unit that were sick -- they were making her flare. She left OCDI in May2011. We got a PANS dx 1/2012 from Dr. T. So i have circled back with Dr. Geller and Dr. Jenike and shared our DD's progress. (70% better from lvlG). I am now working with them to build a PANDAS team at MGH. I think the OCDI is a fantastic program BUT it is an adult program. Minimum age is 16, most there were in there 20's,30's and 40's. The only intense program I know of in the Boston area is C.A.R.D at Boston University (yep,we did that too before we knew what we were dealing with) They do not accept ANY insurance,although if you qualify for a study you go for free.

IMHO intense exposure therapy/CBT is not effective if the PANDAS is raging---but great to kick the remaining 10-15% that lingers.

[NancyD]

Lisa, I forget how old your child is. The OCD Institute at MacLean is fabulous!! They use ERP. Very impressive program. My DD is there now. But the minimum age is 16. Email if you'd like to know more.

 

I just now saw Tiffani's post. There are many more teenagers now (over the summer). My DD has made friends with several. I agree about her comment re if the child is in exacerbation it may not be the best place. My DD's PANDAS is in remission -- her severe anxiety/OCD and impulsivity are the only remaining symptoms and most likely caused by either Bartonella or methylation issues. She is getting a tremendous amount of help at OCDI and she really likes it there!

Edited July 5, 2012 by NancyD

[lmkmip67]

Lisa, I forget how old your child is. The OCD Institute at MacLean is fabulous!! They use ERP. Very impressive program. My DD is there now. But the minimum age is 16. Email if you'd like to know more.

 

I just now saw Tiffani's post. There are many more teenagers now (over the summer). My DD has made friends with several. I agree about her comment re if the child is in exacerbation it may not be the best place. My DD's PANDAS is in remission -- her severe anxiety/OCD and impulsivity are the only remaining symptoms and most likely caused by either Bartonella or methylation issues. She is getting a tremendous amount of help at OCDI and she really likes it there!

 

Thanks, Nancy. Yes, Ian is only 9, so he doesn't qualify. I am looking into a few things locally, and we are on a waiting list for a good therapist. I have stopped the old one, she just wasn't helpful. I can do more for Ian at home, and do. I am totally thinking about one of the intensive programs eventually once we get Ian to a stable place. he isn't flaring right now, but we can't afford to fly anywhere for anything this year, too many trips for IVIG so far. But it is totally doable for next year if I think he is in a decent place. We are still waiting for the last dosage increase of Prozac to take full effect (it is helping him) so I think once we iron out a few things, it could be very helpful to him. I want to wait a few months after his last IVIG (in two weeks) and see how that settles, see how the prozac helps and then we may be able to do it.

[lmkmip67]

Dr. Geller suggested the OCDI last spring for my daughter who was 16 at the time. (before we knew it was PANS) Dr. Jeninke was her Dr for 7 weeks. At the time Dateline NBC/Dr. Nancy Snyderman was going to be doing a one hour medical documentary on Drew and the OCDI. ( I think this is why Dr. Jenike was assigned to her.) We started filming but then the earthquake in Japan happened and all of Dateline's resources went to Japan. They asked us if we would postpone her treatment but we said no. Sooo.. off she went to OCDI. There was a time there where she got much worse, looking back it all makes sense. There were 6 people on her unit that were sick -- they were making her flare. She left OCDI in May2011. We got a PANS dx 1/2012 from Dr. Trifiletti. So i have circled back with Dr. Geller and Dr. Jenike and shared our DD's progress. (70% better from lvlG). I am now working with them to build a PANDAS team at MGH. I think the OCDI is a fantastic program BUT it is an adult program. Minimum age is 16, most there were in there 20's,30's and 40's. The only intense program I know of in the Boston area is C.A.R.D at Boston University (yep,we did that too before we knew what we were dealing with) They do not accept ANY insurance,although if you qualify for a study you go for free.

 

IMHO intense exposure therapy/CBT is not effective if the PANDAS is raging---but great to kick the remaining 10-15% that lingers.

 

Thanks, Mimi. I got your reply on the other thread too. I may be able to give you a call this next week once Ian is in camp. He bugs me ALL the time when he is home. lol. I do think we need more resources for children with OCD in the Boston area for sure. That is what prompted me to start back on my MA in counseling psych to help kids with OCD. I agree that during a flair would not be the best time. That is why I am putting an intensive program on hold for now, but keeping it on the back burner. Ian isn't too bad but we just increased his Prozac, and he is having his last IVIG in two weeks (we haven't seen much improvement with that, so taking a break). I want to see how some of that settles and see if we can get him maybe up another 20% to 75% at least, then I think it could really benefit him.

[minimaxwell]

Who are you on a waitlist to see? Where do you live?

Dr. Geller suggested the OCDI last spring for my daughter who was 16 at the time. (before we knew it was PANS) Dr. Jeninke was her Dr for 7 weeks. At the time Dateline NBC/Dr. Nancy Snyderman was going to be doing a one hour medical documentary on Drew and the OCDI. ( I think this is why Dr. Jenike was assigned to her.) We started filming but then the earthquake in Japan happened and all of Dateline's resources went to Japan. They asked us if we would postpone her treatment but we said no. Sooo.. off she went to OCDI. There was a time there where she got much worse, looking back it all makes sense. There were 6 people on her unit that were sick -- they were making her flare. She left OCDI in May2011. We got a PANS dx 1/2012 from Dr. Trifiletti. So i have circled back with Dr. Geller and Dr. Jenike and shared our DD's progress. (70% better from lvlG). I am now working with them to build a PANDAS team at MGH. I think the OCDI is a fantastic program BUT it is an adult program. Minimum age is 16, most there were in there 20's,30's and 40's. The only intense program I know of in the Boston area is C.A.R.D at Boston University (yep,we did that too before we knew what we were dealing with) They do not accept ANY insurance,although if you qualify for a study you go for free.

 

IMHO intense exposure therapy/CBT is not effective if the PANDAS is raging---but great to kick the remaining 10-15% that lingers.

 

Thanks, Mimi. I got your reply on the other thread too. I may be able to give you a call this next week once Ian is in camp. He bugs me ALL the time when he is home. lol. I do think we need more resources for children with OCD in the Boston area for sure. That is what prompted me to start back on my MA in counseling psych to help kids with OCD. I agree that during a flair would not be the best time. That is why I am putting an intensive program on hold for now, but keeping it on the back burner. Ian isn't too bad but we just increased his Prozac, and he is having his last IVIG in two weeks (we haven't seen much improvement with that, so taking a break). I want to see how some of that settles and see if we can get him maybe up another 20% to 75% at least, then I think it could really benefit him.

[lmkmip67]

Who are you on a waitlist to see? Where do you live?

Dr. Geller suggested the OCDI last spring for my daughter who was 16 at the time. (before we knew it was PANS) Dr. Jeninke was her Dr for 7 weeks. At the time Dateline NBC/Dr. Nancy Snyderman was going to be doing a one hour medical documentary on Drew and the OCDI. ( I think this is why Dr. Jenike was assigned to her.) We started filming but then the earthquake in Japan happened and all of Dateline's resources went to Japan. They asked us if we would postpone her treatment but we said no. Sooo.. off she went to OCDI. There was a time there where she got much worse, looking back it all makes sense. There were 6 people on her unit that were sick -- they were making her flare. She left OCDI in May2011. We got a PANS dx 1/2012 from Dr. Trifiletti. So i have circled back with Dr. Geller and Dr. Jenike and shared our DD's progress. (70% better from lvlG). I am now working with them to build a PANDAS team at MGH. I think the OCDI is a fantastic program BUT it is an adult program. Minimum age is 16, most there were in there 20's,30's and 40's. The only intense program I know of in the Boston area is C.A.R.D at Boston University (yep,we did that too before we knew what we were dealing with) They do not accept ANY insurance,although if you qualify for a study you go for free.

 

IMHO intense exposure therapy/CBT is not effective if the PANDAS is raging---but great to kick the remaining 10-15% that lingers.

 

Thanks, Mimi. I got your reply on the other thread too. I may be able to give you a call this next week once Ian is in camp. He bugs me ALL the time when he is home. lol. I do think we need more resources for children with OCD in the Boston area for sure. That is what prompted me to start back on my MA in counseling psych to help kids with OCD. I agree that during a flair would not be the best time. That is why I am putting an intensive program on hold for now, but keeping it on the back burner. Ian isn't too bad but we just increased his Prozac, and he is having his last IVIG in two weeks (we haven't seen much improvement with that, so taking a break). I want to see how some of that settles and see if we can get him maybe up another 20% to 75% at least, then I think it could really benefit him.

 

We live in the metrowest area, so anything in Boston is really difficult to get to with school and sports. We are on a waiting list with Dr. Guertin. I picked our last therapist off a list on the OCD foundation web site. But she just wasn't a great fit for Ian. He is too busy, always moving around, can't really focus well, etc. She really didn't take control of the situation and I always felt like we were just trying to fill 45 minutes when we were there. She may work well for a more calm girl, but Ian just didn't gain much from it, and we tried for 5 months. It is VERY hard to find therapists that work with kids with OCD out here.

[Dedee]

Ok, I kept meaning to respond to this thread but my Mother had to have emergency bypass surgery and things got a little crazy for a while (still are really). Anyway, we usually use the CBT / ERP program in Florida that is headed up by Dr. Storch. It's a great program. We did the 3 weeks last summer then a follow up week over spring break in March and another follow up week in June. Each time we went my daughter made more and more progress. One of the reasons we decided to go back in June is because the therapist that she was seeing there is leaving in August and my daughter made a great connection with her. We wanted to go one more time before she left. I'll try to shorten the story some......Turns out this therapist that we love so much is moving to be closer to her fiance who lives in Minnesota. She is going to a program that is ran by a physician who has worked closely with Dr. Storch. They also have an intensive program but it is a one week program (realizing that most people can't be gone for 3 weeks). The concepts and therapies are the same as used in Florida but formated into a one week program. The kids will go twice daily for one week and they have a huge focus on sending the family home with tools for success at home. I can not endorse the program as we have not experienced it ourselves. I can only say that I know of one therapist who will be there in August who worked wonders for our daughter. The program is at the Mayo Clinic in Rochester Minnosota. For us, it isn't any further than the trip we were doing going south. So, most likely if we need more help in the future, we may try a change of scenery. Although you can't beat St. Pete for a few days off, and without a doubt Dr. Storch and his team are the best! I just wanted you to know what your options are. Best of luck!

 

Dedee

 

PS - Tried to send you a PM but it wouldn't go through.

Edited July 9, 2012 by Dedee

[jtp]

I'm on the this forum usually for my DS who is 12, but reading these posts have got me wondering if these intensive programs could help my 16 yo daughter. She has not been diagnosed with PANS. Dr B was trying to make a connection because my son has it. So as for her I don't really see her having PANS. However, she suffers with tremendous anxiety sometimes incapacitating and other times fully functional. Severe anxiety has caused her many depressive episodes. She had severe school anxiety and never finished High School, she did manage to get her GED shortly after leaving HS.

 

Our Local Community college had offered her a program where she could get her HS diploma and work towards her Associates Degree at the same time. Which we thought was a wonderful idea. The night we had to attend an information session for this program her anxiety/fears of returning to a school environment went rampid. I couldn't get her out of the car. It was like trying to get her off to school in the mornings again. I thought we had moved on from this, but I guess not.

 

I had searched and searched for help for her, tried several therapists, tried several medications from anti depressants, mood stablizers, anxiety meds, ADD meds, accupunture, chinese medicine you name it! Nothing helped for long or the side effects worsened her condition. I looked into long term inpatient care, most weren't covered by insurance.

 

I had no idea there were such places with intensive treatment other than C.A.R.D (they wouldn't accept her or insurance) and Mclean another long term self pay.

 

My daughter is extremely bright and intelligent with a very creative flare. It's frustrating to watch her lose opportunities due to her anxiety. Most therapists tell me she doesn't have the motivation to get better so they can't help her. I've often wondered if she could get intensive therapy to get to the bottom of this anxiety quickly would help. Going to a therapist once a week has only motivated her for a day or two then by the time she goes back the following week she's unmotivated again. She is currently seeing a therapist whom she likes but again very minimal progress has been made. They just seem to keep her afloat without REALLY getting to the root of the problem and help her to correct it.

 

My questions are:

 

Are these treatments covered by insurance?

Would they help someone like my daughter or is it strictly for OCD?

She does have some OCD(that I can see) but I believe she tries to hide it from everyone.

 

I had given up at this point, but maybe just maybe a program like this could help. We are from North Central Mass.

Any suggestions would be great. Thanks

[Dedee]

I think that it would help but only if she is willing to participate. I took my 16 y.o. son but he refused to participate in the program and we had to stop. As far as insurance, we paid out of pocket, but because it is a teaching institution and the therapist is still doing her post doctoral fellowship the rates were very reasonable. It was much cheaper than doing a weekly visit with a regular practicing therapist for several months. Some of the best money we have spent. You should at least talk to your daughter and look into it. Hopefully, she will be on board.

 

Dedee

[PowPow]

ditto on the above post. USF did not take my insurance, but they only collected what they would not get with out-of-network benefits. even if I paid the whole thing up front, it was about 3k. I would pay that again in a heartbeat. she sites need to be willing, but maybe a few days there and she will. my daughter was pretty uncooperative until the end of the first week, but got so much out of it by the time we left.