demeter Posted January 17, 2016 Report Share Posted January 17, 2016 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! mama2alex, philamom and MomWithOCDSon 3 Link to comment Share on other sites More sharing options...
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