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demeter

100% Ritual Free in Six Weeks.....CBT/ERP Works!

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I just wanted to tell you about our recent recovery of our son after 5 years of chasing Pandas/Pans medical treatment! We truly believe in Pans and that there is an underlying medical trigger. My son was classic, with a sudden overnight onset, becoming a different kid after a fever and severe headache. His Pans behaviors included but we're not limited to: fears, intrusive thoughts, separation anxiety, rituals, unrealistic thoughts, contamination issues, food issues, which I am now referring to as his "OCD". For the last five years we have traveled all over the U.S. for treatment. We have seen PANS experts on both coasts. He has had long term antibiotics, anti virals, had steroid blasts, both long and short ones. He has had a T&A. We have had him on massive ibuprofen. He has had HD IVIG once a month for a year! We have addressed MTHFR issues. We addressed diet he is gluten, GMO, and dairy free with only limited sugar intake. My son never recovered and things slowly got worse, till he really had no childhood. Of course, there were times of being okay, the classic waxing and waning part of Pans. Some things would get better, and new things would creep in, but he was never better than 85% and never for sustained times. This last 1 1/2 years has been one big flare. He became severely attached to his Dad, he could no longer do basic things like dressing, going to the bathroom etc. He had food restrictions, sleep issues, he could no longer engage in things he enjoyed like playing with kids, bike riding, video games, movies, music and the list goes on and on! Our family became wrapped up in his rituals, we could not turn lights on and off, curtains up and down, restricted where we had to walk, restricted family outings, etc. When we felt like we had no idea what or where to go next we called, Roger's Behavioral Health in Tampa, Florida, run by Pans friendly Dr Storch.

 

CBT/ERP (Cognitive Behavior Therapy with Exposure Response Treatment) was the best thing we have ever done for my son's treatments! The results were nothing short of a miracle, really a miracle! The results are exactly what we had been chasing for the last five years. He just graduated from the program yesterday! Six weeks ago on his 11th birthday we started the program. He really was not functioning and we as a family were slowly falling apart! Today is a whole different story! My son is 100% ritual free! We as a family are hopeful and so looking forward to the future. My son feels empowered over his OCD, (Pans behaviors) he is no longer waiting for us to drag him to the next doctor or intervention in hopes of making his OCD go away! He knows he has control over his Pans behaviors! This place is kind, caring, and gentle. They are professional and truly care for our kids, and believe in Pans! They do realize this is a necessary part of treatment, and I am a complete believer. CBT/ERP can be done simultaneously with medical treatment. Oh, get this he is currently medication free! He only takes a few supplements.

 

 

I feel the Pans world is great, knowledgable, and parents are so helpful and willing to share information. However, I also feel CBT/ERP gets missed by this forum and professionals alike! We went to some of the best doctors and this therapy was never mentioned! I truly believe that CBT/ERP should be listed as one of the primary interventions for Pans to be used in conjunction with medical therapies at any time. I truly wish we had been here years ago!

 

I am telling some of my other Pans friends to run here, do whatever it takes! Our family has never felt better and we also feel like we can handle future flares! My son says, "He feels awesomely great! Night and day difference!" We see him engaging in all the things he was avoiding and could not do only a few short weeks ago. This has proved to have been the best birthday present EVER, his childhood back!

 

Please feel free to contact me if you want more information! Best of healing for you all!

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So happy to hear you had such amazing results! There are a number of families on this forum who've gone to either Rogers or the outpatient intensive treatment at the Rothman Center over the years. We learned about the three week intensive therapy from other parents on this forum and it was the only thing that ever helped with our son's school refusal. I am a firm believer in BOTH medical treatment and CBT/ERP.

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I want to say that we did the same thing with our daughter at Mayo Clinic in Rochester, MN. We did a week long intensive and the pre/post difference was huge. We were dealing with severe anxiety/anger and some obsessive thoughts (no rituals). CBT/ERP got us to a more manageable family life. We did not know about PANS/PANDAS at the time we went . It was a few months later when her twin sister got sick and started having obsessive thoughts (very severe overnight change) that I started researching. We did the cunningham panel and then blood work and found we are dealing with very high mycoplasma. Now that we are treating for mycoplasma we are seeing some of the residual (some depression, fatigue) symptoms slowly go away with our first daughter. Our 2nd PANS child (that had the sudden onset, severe obsessive thoughts) is doing so much better now. I will say that with her no amount of CBT helped us. I do strongly believe that if you are dealing with anxiety and obsessive thoughts with rituals that CBT is a very good thing. I also will say that we did once a week group therapy for a number of weeks but doing the intensive gave great results fast! Having a group of kids and parents supporting each other and cheering each milestone was important, as well as working all day long everyday in a row was great. We knew this was our focus (no school, no activities) to stop the flow of hard work. I never would have dreamed that my daughter would have been able to gain in 5 days what she did with her anxiety, anger. With the reduced anxiety the rages were less. Now, the kids with OCD with rituals did need more time to work on their issues but they were equipped to know how to proceed forward.

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This is great news! We have tried CBT in the past but it didn't work - only made things worse - but I think it is because he was mid flare and just couldn't handle it. We have now done IVIG, PEX and Rituximab. The most severe symptoms of rage, anger, hallucinations have gone away but still a LOT of OCD - refuses school, refuses to leave the house at all, has cut himself off from everything. I am still hoping for the Rituximab to kick in but we are scheduled for the Rothmans center. I am just worried about how to get him there and what exactly will happen once we are there. Getting him to an appointment is almost impossible so going all the way to florida and then still having to get him to their office everyday seems impossible. Any suggestions? Details on how it works once you are there?

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We went to Rogers Behavioral Health in Tampa. I am speaking from our experience at their facility, which was awesome!

Their program starts at 8:00 and is done at 2:30 M-F. There is some group therapy and lunch for all the kids together. But mostly the kids spend time working on their own exposures. It is fun environment and lots of interaction between all the kids and the staff. Every family has their own room, although there is always lots of activity and freedom. Although all the staff interacts with everyone, they will be assigned a therapist. My son's therapist, Dr Katie was fantastic, she is great with all the kids and parents. All the therapists incredibly knowledgeable and caring. Although we had never really tried CBT/ERP, many families had and we're amazed at how this program was sooooo much more effective than any other so called CBT therapists or programs they had used. Most families travel to Tampa from far away. My non pandas daughter came with us most days,they were great with her and she enjoyed the environment as well. I was worried about how hard it would be as a parent to watch my son struggle after all our years of comforting him, and majorly accommodating his OCD. It was not mean in anyway, they truly start at a low level before working on the very difficult issues. The amazing thing is these kids do not appear to fight the treatment, if they do it seems short lived. Our son was very motivated, he was so tired of OCD and being dragged from doctor to doctor and intervention after intervention. The kids work very hard for their therapist and most try to do their "exposure" homework each night. The program is very individualized. Although my son is 11 the other kids in his group were in their later teens. He is texting with them on a regular basis! Friendships made here I think will be lasting.

The best things to come out of this program is my son is back! And I don't mean just a little better, I mean 100 percent back! He has no intrusive thoughts, no anxiety no compulsions, no rituals.....NO OCD! The things that created such fear and anxiety that he would cry and scream about, he laughs at now, I am not exaggerating! The other great thing is he feels so empowered over his OCD, rather than beholden to the next treatment and "wait and see" game. The third is I am not as fearful of the next dip or flare. We as a family know what to do.

He truly is a Pans kid, diagnosed and treated initially by Dr T. The treatments worked at first. When he flared big time almost two years ago, no medical treatment seemed to help and we went to several Pandas specialists, and did many interventions and treated many underlying infections. I wish we had added Rogers sooner. CBT/ERP and medical treatment don't need to be mutually exclusive, they can be done together! I think this gets hugely overlooked in the Pans world! The amount of money and time we would have saved would have been worth all the effort it took to travel to Rogers. I highly suggest you look into Rogers as well as Rothman. If you are going down you might as well get a full day of treatment. I know each kid is different, but I strongly feel my kid is like many of the kids here from the stories I read on this forum. As much as it may be hard for some to think a "pysch" treatment will help an autoimmune condition issue, in the end it doesn't matter as long as your child is better! My kid is fantastic, truly fantastic. CBT/ERP worked for his OCD despite what the underlying trigger may have been. We have no known family history. I know the verdict is out on how long this will last. However, he has a therapist he will be following up with, and he is continuing to stay on top of things so the OCD doesn't reignite. The statistics are very positive for the proper CBT/ERP in kids.

Please, please feel free to ask me questions, or contact me personally. I am more than willing to share, and I also have some personal contacts as well. Also my son is willing to talk to parents or kids. I truly want others to feel how we are right now, eight weeks ago we are a wreck!

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We are scheduled for Rothman Institute but I am not sure now to get my son down there. He will not get dressed, will not leave the house, etc. he gets incredibly violent and hysterical if we try. Getting him to any Dr. appointments is and really only possible with several strong men to force him, hold him down in the car, and then restrain and drag him in to the office. I cannot imagine how we could ever get him to Florida. We are also scheduled at one point to go to Rogers in Wisconsin because the Florida Program would not take him (too suicidal at the time but that has passed). They had no advice on how to get him there.

 

Any ideas? We are in a MUCH better place then we were last year but the refusal to leave the house has just gotten worse. I think we really need CBT/ERT but how do we get it? He is 100% uncooperative.

 

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Will they do sessions over the phone? Some CBT therapists will, if a visit in person isn't possible. I don't know whether your son would listen of course, it's just an idea. Is he unwilling to try CBT in itself, or is it just going out of the house that he doesn't like? If he's open to the idea of CBT itself, then he might be willing to talk to someone on the phone.

Edited by Wombat140

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Our son (14) has been dealing with intrusive thoughts OCD for the past 2.5 years. Our PANS journey (as ours seems to be mcyo p triggered) began in the fall of 2013 with sudden onset of these thoughts. They initially ran the full range of topics (violence/harm, sexual, etc). This obviously upset our son as it was totally not his character. He responded almost immediately to abx and we things settled for awhile and then we hit a major flare in the summer of 2014 and have had a couple of blips since that time. Each time, we start back up with short course of the abx. The thoughts have never gone away, but he has not been in distress. However, we seem to now be at point where he is stuck on the scrupulosity OCD (religious nature). His Christianity is important to him and he is now at a point where even the talk of other religions causes him anxiety and makes him question his faith due to the thoughts and it distresses him greatly. It is clear that he is going to have some periods where the thoughts flare even once we get the immuno issues under better control and we want him to have the proper tools to be able to cope and manage without the great distress or the compulsionary actions (like he draws crosses pretty regularly and has to touch his bible sometimes during the day when thoughts invade hard, etc). I would love to hear more about Rothman and Rogers (how to they differ? Are there other locations outside of south Florida?). I do think that a more intensive program would work better than a weekly 45 min session with the therapist as he just feels that he is being pulled to yet another appointment. I think it would be good for him to know that other kids also suffer from OCD and are there to get help as well. Any feedback is much appreciated.

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Rogers has a facility in Oconomowoc, Wisconsin. The main difference that I'm aware of is that at that particular facility, it is solidly inpatient, and the patient/kid and the parents do not participate daily in co-sessions, nor do you necessarily get to see your kid daily, particularly at that age (14). Unless the program has changed since we looked into it several years ago.

 

Meanwhile, Rothman, as I understand it, is an outpatient program so that your kid stays with you at night rather than in an actual facility, and there is also, I believe, more joint kid-parent programming, as well. But that might be geared more toward younger children, rather than adolescents.

 

Hopefully, some others will chime in soon with actual experiences. In the meantime, could you book a double or back-to-back appointments with your therapist so that your son could get in a solid 1.5 hours at a turn, uninterrupted?

 

Good luck!

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Roger's does have an inpatient facility in Wisconsin. However, we went to the Roger's clinic in Tampa, and we were enrolled in their partial hospitalization program. There is no inpatient at the Tampa location. Above in this thread I describe how the day is structured at Roger's. We also talked with Rothman located near Tampa, but we opted to go to Roger's because of their full day program, M-F 8:00 till 2:30. We wanted to maximize our time for our son rather than only a short day, as we were traveling from out of state. I believe the Rothman program is for 1 1/2 hours every day for close to three weeks. Roger's treats kids as young as six but while we were there the majority of the kids were in their teens. Being as our son was very dysfunctional and our family falling apart we wanted the concentrated program. Even though he qualified for inpatient in Wisconsin, I wasn't ready for him to be away from us. In the end the family participation was fantastic! It helped teach us the appropriate skills to deal with his OCD, and allowed for all of us, including his 14 year old sister, to help in his recovery. This experience is really different than booking a double appointment in my opinion. The group activities and the whole vibe of the clinic keeps it fun, (well as fun as exposures can be) and engaging for the kids. The doctors and therapists are phenomenal and really know how to help our kids in a very caring way. Dr Storch is the director at Roger's but was at Rothman previously. Both facilities are familiar with Pandas.

 

Ladymavs, there were other kids at the time we were there dealing with scruplulosity. This is something Roger's is very familiar handling. I am going to pm you soon.

 

As for an update on our son, he is still doing awesome!!! I can't believe the difference we are living now! I am so grateful to Roger's. I'm so happy they exist to help kids and families like ours! Our son is still only on supplements, and no prescription medication. He now has follow up Skype calls with his CBT/ERP therapist every other week. We try to have him work on exposures for 20 minutes every day. He still is OCD free!

Edited by demeter

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This is wonderful news. I am so excited and happy for him and your family.

This program sounds great.

In 2012, i had a daughter at rogers in wisconsin and another daughter received three weeks of daily intensive therapy at USF Rithman center ( then under Dr Storch's) direction. Both were a huge help to each child.

Micheleb, i am going to be frank with you... If you child has to be forced to either place (rogers or tampa) he is not ready for therapy yet. We had to deal with severe OCD on the way to Rogers (driving from DC area without speaking, chewing, a blanket over her head, no seatbelt, raging) but she still was willing to go. Also, they had to legally sign themselves in. If she refused we would be sent home(she was 13).

They must be willing to do therapy or it will not work. At Rothman, my other daughter was not participating at first and Dr Storch was considering sending us home. I was devestated. We had pretty much moved and high water to get her and I there (making life with mom gone for three weeks- husband's work, other kids, etc) thankfully she relaxed and gave it a shot and it was highly successful.

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Our DS (14) is nearly completely overcome with scrupulosity OCD at this point. We have tweaked some supplements, even those (like inositol) that are highly touted for OCD have not done much for us. Same can be true for NAC. We are right now just trying to dampen the thoughts so that CBT can be effective. We have a couple of upcoming sessions with OCD specialist in the next couple of weeks and hoping to get on the calendar a few more times. I just got word that we got approved for the 3 week intensive at Rothman...but cannot get in until July...so hoping to make some progress here until that time.

 

Has anyone found supplements for regimens that have been successful? I would prefer not to go SSRI unless absolutely necessary. We came off the abx for awhile, but maybe we need to switch up abx as our other one was not proving effective any longer.

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I am glad to see that this post is still being read and considered. My son is now 3 1/2 months post graduating from Roger's PHP (partial hospitalization program) and is still 100% ritual, anxiety and intrusive thought free! He is now only speaking with his CBT/ERP therapist once a month. So needless to say I am a huge advocate for Roger's! I really like the interaction with other kids and families, and really, really like how tailored the program is to each child. If your child is not ready to be discharged they do not recommend it, therefore it is not a set length of time. Our son was definitely not ready at three weeks, but at the six week he was totally ready and it has lasted! If you are considering Rothman you may also want to do an intake for Roger's as well. You can then compare the program's further. Roger's offers many different types of programs. The IOP, intensive outpatient program , the PHP full day, as well as eating and anxiety programs. They have both children and adult programs. Dr Storch runs Roger's which has been open for 1 1/2 years, he used to be at Rothman. The intake is free and they will have the doctor's review it and suggest which program is the best for your child. They also will help you figure out your insurance compensation. Maybe they will have a opening sooner if that is what you are wanting. There were other kids with scrupulosity at the clinic while we were there, it is something Roger's deals with frequently.

 

My husband keeps telling me I sound like an ad for Roger's:) I know this is true, but I am just so amazed at our son's recovery from there! I do not get compensated in anyway! Nor do I have an personal connections, other than an everlasting gratitude for Roger's and the doctors there! I also feel like if you are making the effort to be at a program for your son, make the best of your resources, time, and potential success, for us that was Roger's!

 

We had done tons of antibiotics and combinations for years. They helped initially but not for the past year before Roger's. We also have done and still do supplements. We were also dairy and gluten free, but neither seemed to make a difference with his OCD. Really the everyday full day working on exposures, and my husband and I learning how NOT to accomadate is what made the difference, and it was drastic!

 

Feel free to contact me again if you want more details!

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