Dr Storch's Intensive OCD Treatment in Florida

[hawks]

We are seriously considering 3 week intesive Clinic OCD with Dr. Storch in Florida for DS who is turning 15 tommorrow. He was diagnosed with PANDAS in Jan 11' and he is also being treated for LYME as of Feb 11'. The OCD seems to be at the root of all of the behavior issues that he is experiencing. I know I asked about this a while back but can anyone share their experience from this clinic. I am bringing it back up because we are to the point of taking this step now! We were hoping DS would be ready to go back to school at the start of 9th grade but doesn't look to promising at this point. The antibotics have helped a lot from where we were Jan-Feb but we have such a long way to go. DCmom & Dedee I think you are there now or will be going soon. Hoping and praying it helps!

[dcmom]

We will be there starting Aug 1- for 3 wks!

[kimballot]

if you are considering this at all then call asap and make an appointment. You can cancel if you change your mind and someone from their wait list will fill it, I am sure. I called back in April and got an initial evaluation for July — and we will then find out if they recommend the CBT program.

 

 

Best wishes!

[MomWithOCDSon]

Haven't done it, but hear nothing but great things about it. And we met Dr. Storch last year at the IOCDF Conference and found him very impressive: knowledgeable, kind, caring, accessible. If we weren't making progress locally, we'd definitely try this program.

[airial95]

I don't know about the intensive program, my son is too young for it yet (only 3). But my son does do weekly behavior therapy there for his OCD(we're lucky, it's local) and we've had wonderful success with it. We love it, and more importantly, our son loves it!

[Christianmom]

With my son it seems like nothing can make his unwanted thoughts go away (except to distract himself with something like a baseball game). Since PANDAS/lyme causes inflammation in the brain, theoretically shouldn't behavorial therapy be of no profit? Yet it does seem to be helping PANDAS/lyme kids with OCD. Can someone explain why? And at what point in treatment do you pursue it?

[MomWithOCDSon]

With my son it seems like nothing can make his unwanted thoughts go away (except to distract himself with something like a baseball game). Since PANDAS/lyme causes inflammation in the brain, theoretically shouldn't behavorial therapy be of no profit? Yet it does seem to be helping PANDAS/lyme kids with OCD. Can someone explain why? And at what point in treatment do you pursue it?

 

Therapy is a great tool for managing the OCD, and since (unfortunately) subsequent exacerbations can bring a return of OCD behaviors in some of our kids, having those tools on hand is really helpful for preventing the OCD from taking further root and causing larger and larger problems. The unfortunate thing about OCD, whether it's PANDAS or non-PANDAS, is that, left to its own devices, it can consume greater and greater chunks of the sufferer's daily life; it can become learned behavior, or habitual. And then, irrespective of successful medical intervention for the infection behind the PANDAS/PITANDS, it can become harder to successfully address, tame or eliminate.

 

Some of us have found that, in the height of an exacerbation, therapeutic tools are difficult for our kids to take hold of . . . they're so overwhelmed and "under water" with anxiety, frustration, fear, rage, etc. But once the medical intervention (abx, IVIG, etc.) has made a dent in the child's health and you start to see the anxiety diminish, even nominally, stepping in with some good, age-appropriate CBT/ERP can be very supportive and helpful.

[airial95]

" it can become learned behavior, or habitual."

 

That's the key, in my opinion as to why therapy works with PANDAS kids. Like Nancy said, when my son is in the depths of an exposure or exacerbation, the tools are of little use, however, as the abx start to take effect, they are immensely helpful. Therapy techniques have also helped spot exposures early - if the techniques start to falter, we know he may have been exposed to strep. It's been a great early indicator for us.

 

Like what Nancy said, especially in younger kids (my son is 3), the cause of the OCD is PANDAS, but after a while, the ritualstic behavior and compulsions become "normal" to him. So after the inflammation subsides and the PANDAS comes into check, he doesn't know any other way to leave day care other than to line up the trains in the play room in a certain order before leaving, all he knows is that's what he does - it's his normal.

 

It was explained to me by one of our therapists like a drug additiction. You start taking pain pills (or lining up trains) to make you feel better, after a while, you don't need them anymore for the pain, but you still take them because you konw that you felt bad if you didn't. So while the root cuase for needing the pain pills (or lining up trains) is no longer there, you still think that not taking them (lining up trains) will make you feel bad, so you're anxious to take them. It's this pattern that the behavior therapy can help with.

 

It's a very simplistic analogy - that obviously ignores the chemical interactions involved with drug addiction, but it helped me make the connection as to why the OCD stays around.

[Christianmom]

MomWithOCDSon and airial95, thank you for clearing that up for me.

[hawks]

Thanks everyone for your replies. We are going to go for it! We are scheduled to go to the clinic in Sept. Hopefully we will have a chance to do some fun things during our stay that might make it more enticing for him. Thanks again for your replies - this forum has been so helpful in giving us direction on this journey.

[Dedee]

Yes we are in week two of the three week program. We brought two of our children. Our 15 year old who still has some residual eating issues and our 7 year old who has been in acute exacerbation since last november. Let me start by saying the program is wonderful. My daughter has made huge strides already. Most importantly, we have learned so much on how to help her and she has learned tools on how to be strong and how to help herself. Now my 15 year old is a little different. He wasn't too excited about going in the first place. This had been discussed and we were anticipating some resistance. The team is awesome and couldn't have been better with him. However, after the first week, my son refused to return. He has tons of denial regarding his condition and dosen't believe his limited eating selections is a problem. He has been evaluated by both Dr. Murphy and Dr. Storch who believe it is a problem. In addition he has a therapist at home who thinks it's a problem also. But....I can't physically drag him there so we have to re-group. Like I said though, everyone here is great. They are going to meet with the family (actually that is just me right now. Hubby had to go back to work), to come up with a workable plan for returning home instead of just leaving us to our own devices. That is very helpful for me.

 

So, I would recommend the program if you can possibly manage it. I think it is easier for the younger children because they are easier to "re-program" if you will. Although I am told they have good sucess with teens as well. I certainly see lots of teens in the waiting room. It has been a life saver for us. Between the IVIG a month ago and this program, my daughter looks like a different person. It's a beautiful thing to see. I would be glad to answer any questions for you if you want to PM me. Also, if you need help finding some place to stay, I can give you some pointers. We have managed to throw in a few sight seeing days as well. I think I am actually enjoying myself. :-) Shhh....

[Burnell]

Yes we are in week two of the three week program. We brought two of our children. Our 15 year old who still has some residual eating issues and our 7 year old who has been in acute exacerbation since last november. Let me start by saying the program is wonderful. My daughter has made huge strides already. Most importantly, we have learned so much on how to help her and she has learned tools on how to be strong and how to help herself. Now my 15 year old is a little different. He wasn't too excited about going in the first place. This had been discussed and we were anticipating some resistance. The team is awesome and couldn't have been better with him. However, after the first week, my son refused to return. He has tons of denial regarding his condition and dosen't believe his limited eating selections is a problem. He has been evaluated by both Dr. Murphy and Dr. Storch who believe it is a problem. In addition he has a therapist at home who thinks it's a problem also. But....I can't physically drag him there so we have to re-group. Like I said though, everyone here is great. They are going to meet with the family (actually that is just me right now. Hubby had to go back to work), to come up with a workable plan for returning home instead of just leaving us to our own devices. That is very helpful for me.

 

So, I would recommend the program if you can possibly manage it. I think it is easier for the younger children because they are easier to "re-program" if you will. Although I am told they have good sucess with teens as well. I certainly see lots of teens in the waiting room. It has been a life saver for us. Between the IVIG a month ago and this program, my daughter looks like a different person. It's a beautiful thing to see. I would be glad to answer any questions for you if you want to PM me. Also, if you need help finding some place to stay, I can give you some pointers. We have managed to throw in a few sight seeing days as well. I think I am actually enjoying myself. :-) Shhh....

[Burnell]

Question for you:

1. how long did it take to get in?

2. Where are you staying?

3. Did your daughter have the IVIG? Did it help?

4. Did insurance help any with either IVIG or the Therapy? I read the intense therapy at UPenn in Philly is nearlt $8,000.

Edited July 22, 2011 by Burnell

[hawks]

Dedee -

 

I am so glad the clinic has been good for your family. I am wondering how well my DS15 will do. Like your son, he is not excited to go - I hope he will hang in there and not fight this. They have so much going on with their illness and then to put puberty on top of it. We are suppose to go 9/7. I am really hoping it will help both me and dad in how to respond to the ocd - I know we are enabling him at times - it is so hard to know how to support him with out enabling him. Thank you for your response - again I am so glad that you had a good experience. I might PM you later if I have more questions.