Four Winds in Westchester?

[T_Anna]

Anyone ever hear of this facility?

 

It was suggested as an option if the PEX doesn't work. Honestly, it seems too early to start looking into inpatient programs.

DS15 just got out of the hospital/5 days PEX...only 36 hours ago!

 

But since the suggestion will be followed up with the following:"Have you had a chance to look into it, there is no harm in research is there?!"

 

Has anyone had any experience with this facility? I didn't see any specific OCD mention on their site.

 

TIA.

 

I'm running out of the adrenaline that kept us going through the hospital stay : /

 

T.Anna

DS15

[MomWithOCDSon]

I don't know, T.Anna. I'm not personally familiar with this facility, and I don't want to just be a wet blanket, but . . .

 

We, for a very short period, enrolled our DS in a partial outpatient program at a well-respected hospital psych program. It featured both kids who were inpatients in the adolescent psych ward, and kids from the community who came to the program from 8 a.m. to 3 p.m. When we met with the intake people, they said oh, of course they know OCD and anxiety. Yes, their program is designed to help. In other words, they said all the right things.

 

Truth is, the program was 98% centered around kids with severe behavioral as well as psychiatric issues . . . homicidal, suicidal, cutting, drug abuse, alcohol abuse, etc. Our DS was the only kid who was wracked with anxiety to the extent that he was spooked by his own shadow. In group therapy sessions, a prevalent theme was: "Have you thought about killing yourself today? Have you thought about harming yourself today?" Great, uplifting, helpful stuff for a kid with OCD and anxiety, I can tell you. Gave his OCD ALL sorts of new issues to grab onto and recycle through his brain. DS was confronted in the bathroom by another boy in the program who'd drawn a sketch of two figures, one of which was holding a gun, and the other of which was spurting blood from his head. And the boy pointed to the figure holding the gun and said, "That's me." Then he pointed to the bloody figure and said, "And that's you." Great.

 

They stuck him in these inappropriate and unhelpful group therapy sessions. They messed with his meds and drove him deeper into a drug-induced craze. They did not help him.

 

Furthermore, beyond all of this stuff, I think you have a legitimate concern in terms of this program failing to highlight the treatment of OCD or even anxiety. What's more, they do not mention the primary treatment methods for treating OCD and anxiety, those being Exposure Response Prevention (ERP) and/or Acceptance Commitment Therapy (ACT). Rather, within the adolescent treatment section of the site, they say:

 

"Adolescent treatment utilizes DBT-informed treatment (Dialectical Behavioral Therapy), including skills training in mindfulness, distress tolerance, emotion regulation, interpersonal effectiveness and relapse prevention."

 

Sorry, but this just sounds like they're ready to deal with "problem kids" through behavioral reconditioning of some sort.'

 

If an inpatient OCD program is what is next on the agenda, I would suggest Rogers Memorial Hospital in Oconomowoc, Wisconsin. I know there are a few other excellent and well-recognized programs in other parts of the country, and some other folks here can chime in about those. Meanwhile, if you would prefer sticking closer to home and get generally good feedback about this particular place, I would go in and interview them regarding your specific concerns and your son's specific needs. If you're not sure that you can spot a "sales job," take a level-headed friend or family member with you, someone who's a little less emotionally involved and will therefore be more likely to sniff out an "off" set of treatment promises.

 

Good luck! May the PEX be with you!

[PowPow]

Rogers is great at what it does. In our experience, I noticed two things:

1. many of the kids (maybe 90%) had major emotional/behavioral problems (or family issues) AND had OCD. So there will be a lot your child is dealing with in group, roommates, etc.

2. CBT or DBT or ACT is no good when a kid is so very sick. the therapy can treat a symptom, but a medical problem needs medical treatment. Using a crutch will not heal your broken leg, though it will help smooth things over for you for a little while. You need a cast to fix it. Crutches are good and necessary, but the cast needs to come first.

 

you could potentially waste a lot of money and time and effort on something that no matter how hard your child tries, just will not work! Or, it may work, but at the next exacerbation it will all go out the window.

These kids cannot help how they are acting.

[T_Anna]

Thanks. That was my instinct as well. I think

the doctor was concerned that if the PEX didn't work (or work fully), she was out if ideas. But there are other ways to solve this problem and we will exhaust all those other options first. Tomorrow I will talk to get about immune suppressants, I don't think she has a ton of experience with such severe patients, but she is willing to push until he is healed.

 

Tonight DH and I decided to push a little. It went ok, he didn't cry or yell and finally did what we asked (got up to pee, crazy I know).

 

The other issue is that his OCD is more avoidance, so it's unclear at this point just how many obsessive thought he has as he avoids going almost everything. He would never share any if his fears with us, even when things were pretty stable.

 

Thanks as always!!

T.Anna

DS15

[tpotter]

I do actually know of several kids who were at 4 winds quite a few years ago...before I knew what PANDAS/PANS was. I know nothing about it now, but I will chime in along the same lines as MomwithOCDSon. When one of my DS was 15, he was hospitalized (we didn't know he had PANS, yet), because he became suicidal after a severe flareup of an OCD issue that we didn't know was OCD. Now, maybe it was just a horrible hospital, but he wasn't allowed to change his clothes for 2 days, the kids did nothing at all during the day, except lie around, and they didn't even give him a blanket the first night, because "we don't have any clean ones." He also told me that his room mate told him how to build a bomb! Wonderful! I don't trust these hospitals, and honestly there are so many other things you can be doing. First thing is to check for any and all infections, such as residual strep, lyme, bartonella, babesia, erlichiosis, viruses. Both my children had PEX, and multiple IVIG's, and there's no question they helped calm things down. But, we also did years of abx, and now are entrenched in alternative tx (ART, homeopathy, etc.) I have really seen the most long term benefit from the alternative tx. Personally, I would do the alternative next, IMHO. The hospital will go the psychotropic route, and that just scares me (DS only had negative reactions to that stuff!) PM me if you want more information.

[clarkalisa]

What is ART? Thanks!