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demeter last won the day on October 3 2016

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  1. Hi Leighann, I'm not sure why I decided to search this website today as my son has been healthy for four years now, and the Pans, medical life seems so long ago. Then when I read your post my heart went out to you and your son. It sounds so so similar to our family's story. The good thing is we have a great ending as our son has truly been well for over 4 years. I feel you can get there too. We too had tried everything for over 6 years. This included everything you can imagine, antibiotics, antivirals, diet changes, homeopathy, T&A, CBT, supplements, vitamins, parasite treatment, and I'm sure I'm forgetting stuff. We also had the CVID and PANS diagnosis. We did monthly IVIG for a year. However, after all this he still had the anxiety, fear, OCD, bizarre behaviors that can accompany PANS. I believe in the end after addressing all of his medical issues the missing piece that changed our lives for the better was taking him to Rogers Behavioral Health's partial hospital program. Which consisted of full days of intensive CBT/ERP for six weeks. Our son made immediate improvements then a full recovery to his normal healthy happy self that we hadn't seen for years. Since he finished the program over four years ago we have yet to see any regressions in behaviors, even when he gets sick. If you search my name (Demeter) you can see my other posts and responses to others about our story more in depth back in 2016. Please also feel free to reach out to me with any other questions you may have. My son is also available to talk with yours if that would be helpful. Anyhow, I wish you the best and know and trust you will get your son healthy again! Sincerely, Wendy
  2. We too hit a "no" improvement time with my son. He was being treated by Dr B and Dr M in Connecticut for Pans. We were addressing many infections as well as monthly IVIG. After a year with no real improvement we took our son to Roger's for the partial hospitalization program. This was our idea not suggested by his current treating doctors. I think sometimes with Pans it is either medical or pysch path. In reality it does not need to be mutually exclusive. Anyhow, for our son Roger's was amazing. I believe he needed all the medical issues to be addressed and then for some reason he was stuck with residual stuff that Roger's addressed. My son was debilitated by OCD, anxiety, intrusive thoughts, however, never had tics. We stopped all prescription meds which was combo antibiotics, and HD IVIG before we checked in last November. He was finished with the program mid January this year and he has been 100% ever since! He still takes zero medication. He does talk to his OCD therapist every 1-2 months for maintence. Anyhow, just another idea. Best to you and your son and I hope for healing soon. Please feel free to contact me if you want any further information!
  3. My son was far, far away from baseline when we checked into Roger's! Six weeks later he was back to normal....something we had forgotten even existed! There was another family at Roger's at the same time as us, whom had done lots of CBT/ERP in their home state. They even had therapists come to their home a couple of times a week. They were amazed what Roger's did for their child in just a matter of days! They said it would have taken a month or so, and lots of money to get were Roger's did almost immediately. I had a friend and her daughter recently stay at Extended Stay America on Lois avenue, walking distance to the clinic. She felt very safe. We stayed in our RV in Pinellas Park, about twenty minutes away without traffic. You might want to ask Roger's as they may have recommendations and or special rates nearby for accomadations. Keep hanging in there:)
  4. My heart goes out to you Beerae, as I can sooooo relate to your post! We have had a five year up and down roller coaster trying to heal our son from Pans. We actually drove across the country to come see specialists of which one I believe you see, Dr Moorcroft in Connecticut, as well as get IVIG from Dr Boubolis. I so was hoping for the doctors to tell me what path to take, and what would heal our son...but to no avail. There are so many triggers, genetic predispositions as Nancy states, and so many different routes for recovery. I feel we would be still doing the same interventions and still stuck had my husband and I not decided to make a huge treatment change on our own for our son. I post about my sons turn around at Roger's as it truly was amazing. We really were falling apart before we checked into Roger's and this is after many medical interventions. I am huge proponent of merging the correct CBT/ERP, in conjunction with medical interventions if necessary for healing some kids, not an either or path! We obviously had targeted multiple infections with multiple combo antibiotics and addressed immune deficiencies....but he was still so sick, so dysfunctional! I am not sure he would have excelled at Roger's if these interventions had not been addressed, but we will never know. I also know of a family where IVIG was done during, and antibiotics were used throughout their time at Roger's. I do feel like our specialists as well as others should recognize that good CBT/ERP therapy may be a key component, and they should propose families look into it if their kids become stuck, Dr Greenblatt was the only doctor to say we need to help our son get a break from the "torture" he was experiencing from his OCD, but his field is pyschiatry, although he is very aware of Pans. Dr B and Dr M were saying give it more time, and I don't think either of them have a clue to how much we as "Pans" families put up with and how destructive it can be on the entire family! Neither my son our I feel he is cured! Check out his quote he gave for the OCD movie he is going to be in. https://www.facebook.com/ocdkidsmovie/photos/a.915456028570094.1073741829.914162465366117/981276198654743/?type=3 I know he will deal with OCD and will need to keep it in check for probably his whole life. I also know with illness, stress, and insect bites etc we will need to be aware of how his body may respond abnormally. As most of us we will always have a bit of worry over our child's health....at least I know I will as it was not that long ago he was totally dysfunctional. We decided to go to Roger's because of others from this forum, and it changed our lives! I so hope that maybe the same will happen for others! Please, please feel free to reach out if you would like any more information or questions answered....hang in there!
  5. The genomind test is a great! The max they charge, at the time we did ours November 2015 was 300$, maybe you would be fortunate and have insurance that covers it, we did not. The test is a genetic test that will be helpful for your child's lifetime. I highly recommend the test as it is a simple cheek swab and we sent it in from our home. Dr Greenblatt in Boston ordered ours for us. Roger's likes this test and can order it as well. My son is not on any prescription medications and has not been for the past six months. I do give some basic supplements (Zinc, C, Fish Oil, Magnesium, B Complex, P5P, Trace Minerals, Daily Vitamin) and probiotics I give. But quite truthfully I am not very consistent with them anymore. Please feel free to pm me with any other questions!
  6. I am the other mother:). And I am so, so happy for all the progress your son has made! I know the commitment and challenges it takes to get a child to and through the Roger's program. It usually is a huge strain on family dynamics, especially if there is travel involved....and the child has lots of challenging work, and so do we as parents! Roger's is great in teaching skills and building confidence on how to handle OCD, anxiety etc in the future both for the child and family. My son continues to live 100% ritual, fear and anxiety free! Really he is now a normal kid with zero issues! He has the skills to know what to do if any of the old behaviors try to creep back, and none have. The other amazing thing is he currently has a cold and has been around others with one as well, this would have made his old behaviors all worse.....but nothing now! He is over 5 months post graduation from Roger's! Amazing for me to think back to the "dark" days which were not that long ago. I am sure I will never forget them, but I also feel confident we will never be there again! My son just got off of Skype with his CBT/ERP therapist today and we were reassured yet again that he is doing awesome. He speaks with his doctor close to every other month, mostly due to my PTSD, rather than necessity! I hope for you, your son and entire family continued relief from "pans" craziness!
  7. 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!
  8. Roger's in Tampa has programs for both children and adults. They also have an intensive outpatients program, IOP, which is similar to Rothman, and a partial hospitalization program, PHP, which is full day. Both have weekends off and the length of time varies with each patient. It is a fantastic program and the doctors and therapists are fantastic. Dr Storch was at Rothman but now runs Roger's in Tampa, which has only been opened for 1 1/2 years. Yes, they take many insurances they took ours, Aetna. If you call they can help you figure out your specific coverage. My 11 year old son was in the PHP program for six weeks. Our experience was beyond our expectations, so wonderful and three months post graduation our son still has zero OCD, zero anxiety, zero fears!
  9. You might want call to Rogers in Tampa also as they also offer an IOP, intensive outpatient programs, both in the morning or afternoon. We did their PHP, partial hospitalization program with amazing results! You can read my post about our experience at Rogers, "100% Ritual Free in Six Weeks"
  10. 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!
  11. I cannot reply to the PEX part of this post. However, i can totally relate to being at your wits end!!! We were the same way with our son! We tried multiple medical interventions, including years of antibiotics (targeting mycoplasm, strep, Lyme, babesia, and bartonella) steroids, T&A, anti-virals, methylation, diet changes, 12 HD IVIG's and I'm probably forgetting some:(. When we really, really were at our "wits end", we decided to go to Roger's Behavioral Health in Tampa. I cannot be grateful enough! This really was a life changer for our son and our family!!!! And the six weeks were covered by Aetna. I would never have imagined we could be where we are as a family, really back to our normal baseline before this Pans s$#t hit. He just told me today he barely notices any OCD, and we as a family don't notice any! Our son's Pans behaviors were severe OCD, major separation anxiety, and fear, he did not have any tics. Anyhow, I have been posting about our son recently,(more details about our experience in an earlier post) as he finished the program mid January. I really hope families consider CBT/ERP from a credible clinic. I feel it gets missed as a proven therapy in the Pans world, no doctor ever mentioned this as an option, and I only recalled a few parents on this forum talk about it which is why we decided to go. Anyhow, you can continue with medical interventions at the same time as doing CBT/ ERP. Please feel free to contact me. Also, my son has talked to other kids about the program, so if your kids are interested he is willing. Our son is 11 and we have been dragging him to doctors since this started when he was 6. He truly feels happy, healthy and empowered! I can't even begin to put into words how elated his sister, my husband and I are:). Regardless, of your path I am hoping for a turn around for your family! It is amazing what what you have done and are doing for your kids!!!
  12. Rogers took our insurance, Aetna, for their PHP (partial hospitalization program) that ran from 8:00 till 2:30 M-F. They also have an IOP (intensive outpatient program) that runs either morning or afternoon, for 4 hours M-F. This is in Tampa. They have a kid side and an adult side. Rogers residential program is located in Wisconsin. When I contacted Rothman I was told it was 1 1/2 hours M-F. We opted for Rogers, figured if we were going through all the coordination to get there we might as well go "all in". Dr Storch now runs Rogers, after being with Rothman. Both places are Pans friendly. Seeing how the full day went at Rogers we are very happy with our choice, as it allowed for kids to meet others, have fun while working hard. I also liked how much our family was able to participate in the process!
  13. I so empathize with you all! We were at our wits end and I am not sure how much longer we could have gone on in the same manner. We were all stressed, and our marriage was suffering. My husband and I even see the same on the Pans front, but my son's behaviors had hijacked the family. He is a Pans kids, we did antibiotics, steroids, and a T&A, which worked well for the first few years. Then when he flared again almost two years ago it was horrendous and nothing seemed to work. He has had combo antibiotics targeting strep, mycoplasm, Lyme, Babesia, and Bartonella. He has had 12 IViG's over a year from Dr B in Connecticut. He had been treated during that time by Dr M in Connecticut as well. Nothing seemed to help and he was either in a constant flare or herx from the treatments. His Pans behaviors became so bad at one point we thought he would end up in the psyche ward. He had intrusive thoughts, separation anxiety, rituals, unrealistic fears, eating issues, and on and on. He has never had tics. No Pans doctor ever suggested intensive CBT/ERP, I truly don't think they know how much or families suffer and tolerate. We chased doctors, we spent massive amount of money, we altered our living situation and drastically changed the way we had been as a family, goodbye normal relationships. We were all suffering. We did not know what to do so I contacted Rogers Behavioral Health in Tampa. I had seen it posted here a few times in the past and it really was the only thing left we hadn't tried! OMG, it truly saved our family, I mean it! I cannot thank the therapists and the program enough. This is a Pans friendly and knowledgeable clinic, that realizes appropriate CBT/ERP will help kids like ours regardless of the initial trigger. This therapy does not preclude one from continuing down the medical path at the same time, which we will continue to do. The other key is to make sure it is CBT/ERP, no amount of talking would have worked for my son. Also beware of the thousands of "CBT" therapists, of which only a few hundred are good! I wish CBT/ERP was included in the treatment hierarchy when a parent researches Pans. This traditional path works for many Pans kids, I can vouch for this. I only wish I had added this years ago, I can only imagine where we would have been both emotionally, medically, and financially. I know the logistics of 4 plus weeks in Florida seems like a nightmare, but with the results it is so worth it! I also don't think we would have had the same outcome with a few hours a week of therapy. The best thing is my son feels so empowered, and confident that he can beat and has control over his "Pans" behaviors! He is no longer beholden to doctor after doctor visit, and treatment after treatment waiting hopelessly for something to work. I on the other hand am not so terrified for the next dip, I too have confidence and skills that we can handle Pans. The other awesome thing is he is medication free after all these years! He is only on basic supplements. Please see my recent post about 100 percent ritual free in six weeks! I know this is redundant but I feel like shouting from the roof top, "run to Rogers". Truly after five years of up and downs and chasing Pans, we are finally where we want to be, my kid is 100 percent back to baseline and we have never acheived that before, although we got close but never here. I will keep you posted as to his progress. For now he sees a good CBT/ERP psychologist once a week as we don't want the behaviors to creep back. He is enjoying his childhood again! I chuckle to myself when I yell at him for stupid normal kid things! We are back as a strong healthy family!
  14. 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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