Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything posted by demeter

  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,
  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
  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 o
  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 s
  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 Co
  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!
  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
  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
  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 t
  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 wer
  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
  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
  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 f
  15. 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 se
  16. My friend swears by this method. http://www.nuvoforheadlice.com/method_explained.htm However, we didn't use it since while traveling unable to get Cetaphil. We used olive oil, and smoothered them every 4 days, for six weeks...not fun but worked! We only washed bedding during every oil treatment, along with nit picking and combing. Hopefully, you escaped them!
  17. No, I don't think the T&A helped in our case. He got strep shortly after, and as I stated he is continuing to get strep. I believe it didn't help since we are probably dealing with biofilms. So taking out the tonsils didn't get at the root of our problem. This all can be so tricky! I'm glad your kids are tolerable even with strep in the house!
  18. Thank you all for you helpful information! It is not more than I was asking at all, I so appreciate the sharing of knowledge and experiences! Unfortunately, I haven't had time to read all the new information yet, but am looking forward to doing so. In fact, I'd would much rather be doing that than packing to move! Are biofilms more common with Lyme, or are they also as common with Strep and Myco which my ds has tested positive? Is the treatment you explained, SF Mom, for Lyme specifically... or does it blast all biofilms? Just wondering since strep seems to be the worst of our "known" en
  19. Thanks so much for your information. I knew about NAC but had forgotten about it's use with biofilms! I remember it as a precursor for gluthione What dosage do you start at, and do you up the quantity over time? Any particular brand you are favoring? What bad reaction to NAC would I be looking for...herxing? Both of my kids are PANS and my ds is 55lbs and dd is 70 pounds. LLM that article is great and I have passed it on to my pediatrician as well, thanks again. Is your plan to pulse your ds or are you trying to just remove the antibiotics at this time? Is the pulsing your film strategy..
  20. My ds just tested positive for strep on Friday. We almost didn't test the family on our weekly visit to our incredible Panda's savvy pediatrician. And to everyone's shock my ds was positive, yet again! He had no physical signs...but all the Panda's crap. Mostly OCD, rituals, and fear. Get a load of this...ds, myself, and my Pandas dd all just had strep June 1st! He has been exhibiting Pandas behaviors since March 2011. We first discovered Pandas, and started treating with antibiotics July 2011. He is currently on Augmentin (for 6 months) and Biaxin( for one year). He also is very ibuprofen dep
  21. I feel your pain! My ds just tested positive for strep on Friday. We almost didn't test the family on our weekly visit to our incredible Panda's savvy pediatrician. And to everyone's shock my ds was positive! He had no physical signs...but all the Panda's crap. Mostly OCD, rituals, and fear. Get a load of this...ds, myself, and my dd all just had strep June 1st! He has been exhibiting Pandas behaviors since March 2011. We first discovered Pandas, and started treating with antibiotics July 2011. He is currently on Augmentin and Biaxin. He also is very ibuprofen dependant. Had a T&A
  22. Yes, it is a genetic mutation. Our family stumbled onto this when our pediatrician, treating my PANDAS kid, heard that my husband had a blood clot. Blood clots are a possible indicator for the MTHFR mutation, as well as migraines. He was treated with B12 shots and methylfolate to hopefully, prevent any further clotting...the migraines leaving were a added plus! I think it is still to early to state this has "cured" his migraines, but it does seem to be a layer of integrative health that seems to be helping. We are new to this MTHFR stuff, so it is difficult for me to explain. Others have
  23. My dh has been a long time migraine sufferer. He experienced auras, visual disturbances, and nausea. They occurred about once a month. Through our PANS journey we have found that we are a family of mutants...that is we all have MTHFR polymorphisms. Everyone, in our family now takes B12 shots, and Thornes Methylguard plus. Interestingly, he now has not had a migraine since we began this regime in January.
  • Create New...