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Everything posted by PowPow

  1. Both were very good for CBT/ERP. Your child must be willing to work and try to get better. If they are so entrenched in OCD that they refuse help, it will not do anything & the child will probably be sent home ( I know because they almost sent us home from Rothman!) I highly recommend both programs~ though my recommendation is from several years ago. I would send another child there, if they needed it. Leaving a child far away for weeks on end at Rogers (or anywhere) was very difficult, so I would think Rothman would be preferable for most people. If you have specific questions, ask away !
  2. I have "older" experience at both rogers in wisconsin and usf Rothman , from 2012. One daughter was 13/14 at rogers in wisconsin for over three months and the other was 12 while at USF daily one-two hour intensive therapy for three weeks. Both very different but very helpful. Feel free to pm or ask here specifics
  3. 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.
  4. OCD was completely unrelenting from onset until proper treatmemt in my daughter's case. I will be honest, i think that worrying about Lyme disease may prevent many many people from seeking the tx they need. I think it is a crapshoot, really.Even if you do the " correct" test and it is negative, you will still have people telling you it could be lyme or a "co-infection". You have tried abx and they did not really help. Trying something different would be my bext step.
  5. trintiybella, how is your daughter doing? Can you post the list of supplements so we can try to help?
  6. the 5 mg of prednisone is not really anything for this situation, honestly. So do not let the lack of effect of that put any bearing on whether or not it would be helpful. My daughter's first dosing for this was 60 mg! & she was 10 She was actually given a 5mg of prednisone dose for a week by her LLMD and we saw it do nothing. The 60 mg tapering dose was ordered a few months later and was the first real breakthrough for her. Also, we did not see the effect from the 60 mg (every day for a week) (& then tapering down over a month)- until about 10 days into the steroids. So, again, this may be an avenue for you, since, at least -- it is something different. Now, how to get the medication? That may be difficult, hopefully not. Also, did you ever try clomipramine? I think I mentioned that to you, before. My daughter, who is now 18, really thinks it helps take everything (OCD, anxiety, sensory stimulation) down a notch. She is only on 25 mg , which is a baby, teeny, tiny dose. But it seems to work for her. She was on much, much higher doses and I think it was not helpful, possibly harmful for her at those doses. OK & I mention this at the risk of being totally frustrating and annoying-- my daughter has learned to meditate. She taught herself through youtube videos. She has gotten it down so well that she has been able to filter out the negative stimuli that previously would have triggered a huge OCD spiral and the tics that go along with it. It is not 100% and she still has difficulties, but that intervention has really helped her. Granted, she has had much medical treatment before she even got the point where she could even remotely consider any therapy, let alone mindfulness (with the help of an excellent ACT-therapy psychologist) and then self-taught meditation. I will be quiet now-- if just learning to meditate would help it all go away, I am sure you would have done that already....but I feel like i must mention it. I thought it was mumbo jumbo when she first got into it, but now, I am so grateful for this . it is a great gift she gave herself, truly.
  7. Wombat, have you ever tried prednisone or steroids for anything else since 2003 onset? If you can think back- and you ever did (for another illness) did it help? I am just wondering, as you tried a few antibiotics without affect. Also, the way you describe tics is similar to my child and steroids help with those for her~ as they seem to be of a physical expression of OCD. She also has the sound sensitivity (hyperacusis?). We have found that my daughter has clear autoimmunity and that avenue of treatment has been the most successful. Just an idea. Have you seen this article and maybe tried to contact the authors?http://www.discoverymedicine.com/Sarosh-R-Irani/2011/05/17/autoimmune-encephalitis-new-awareness-challenging-questions/ i wish i knew more to help you or
  8. My daughter has been on cellcept for two years. I cannot see any negative effect from it. However it does not do anything quick nor drastic for her symptoms. Of course like anything, it is hard to know what is what in terms of recovery. She has worsened when she us noncompliant,specifically with the cellcept. We use the brand name version at the recommendation of our pharmacist. She has complained of some moderate stomach upset with doses lately, so she has just switched. to myfortic in the past few weeks. She also gets monthly solumedrol and ivig, so i cannot attest to cellcept as monotherapy.
  9. I know of two families who were told by Dr L that their child did not have PANDAS. She recommended CBT and psych consult for at least one.
  10. That is precisely the problem. I am not aware of any reliable testing that tells which neurotransmitter is "off". Based on symptoms some psychiatrists will guess, but i think it is a stab in the dark.
  11. My daughter's psychiatrist uses Genesight testinghttps://genesight.com/ my daughter had a Genova Diagnostics Detoxi-profile done many years ago byher integrative med doctor,so we did nto do Genesight. I know that it has a sliding scale ( you pay based on your income) but I am not sure how it would work for someone not in the US. The highest cost is around $300, I think. I believe it comes with a dummy proof list of what meds to use caution on (literally- green, yellow and red list- like a traffic light) Did you try anafranil before? this has been a relative winner in our household. Best Wishes, Wombat!
  12. trinity, have you considered seeing Dr L in MD? it think she may offer you a little more help with diagnosis and treatment than you have been able to secure. If hopkins does not pan out-- please consider seeing her
  13. It sounds like you might be describing a "cotard delusion"- which can vary from thoughts of missing body parts to thinking you yourself are a corpse. I would second the brain on fire recommendation and also recommend looking past pandas and at the many causes of AE. My daughter did not have cotard syndrome but had other psychotic thought processes that were alleviated by aggressive autoimmune treatment. Here is a short article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695744/
  14. My daughter takes low dose (25 mg), anafranil and it is a huge help to her. We just tried to switch to celexa and my daughter (almost18) insisted she had to go back on it. This is a great med for ocd and anxiety and is often over looked due to side effects. It is important to check levels as my daughter has been too high on it and that can be serious.she has been on it, at varying doses, since 2009.
  15. Unless you are wealthy and $20k does not make you blink & your ins covers the 1g/kg dosing, go for it. My daughter had both 2g/kg singly a few times over a few years. It really did not help that much. She has been recieving(among other things) 1g/kg mo thly for two years and I, in no way, see it as inflammatory or worse for her symptoms. She is much better than before thisivig regimen began. My daughter did have an overnight onset, though. I hope this helps you.
  16. NMDA is far from the only marker for autoimmune encephalitis. Please go to aealliance.org for more information. Additionally, there is another website, California encephalitis society or something, that has much information on encephalitis. Her positive response to steroids would seem to point to autoimmune causes.
  17. That is good. It is probably NMDA, GAD, VGKC, maybe some others. How about lupus or anti-phospholipid antibodies? My daughter has antiphospholipid syndrome. AEALLIANCE. ORG. Might have lots of information for you, Michel12.
  18. Pex took about one month to help my very ill child. That happened both times she had it. Physiologically, the way it works, it should not take 5-6months. Does your son have confirmed autoimmunity? Labs? Positive response to steroids? If so, then yes, continuing on to the next line of tx would be appropriate and rituximab would be the next lin of tx . I don't believe there is any true reason why there should be a flare after rituximab. Unless just anxiety for the multiple infusions causes problems! We were explained, by our doctors, that the mechanism of action does not even really do anything for a few weeks anyways. My daughter may be getting ready to have her third round of it this month.I have very little hesitation doing it, as it did not seem to cause anything negative. And in fact it is probably a key player in her recovery. Of course it does have some long term, very serious Associated problems, including increased risk of cancer, but at this point the risk vs benefit is worth it. I have heard some pandas parents say that it's not a big deal to have it, And there's nothing potentially dangerous about it. That is not true. You must know That there is autoimmunity involved. My daughter's Particular antibody is known to be responsive to rituximab.. So I guess she just got "lucky "
  19. No flaring noted here. However, she was also given high dose solumedrol alongside the rituximab, and that always helps her, even alone.
  20. My kids (4 with symptoms- two severe) all had different "triggers". One was strep, one turned out to have anti-phospholipid syndrome, one had sleep apnea (which was treated by a T &A, which led to finding tonsils had MRSA!) & we never figured out the fourth. One daughter did have Lyme & Babesia (cdc positive, quest labs, treated extensively by a previous president of ILADS) but we never tested the others and they all got better with individualized tx. My point is: look at this child individually and I, myself, would not jump to Lyme. It is potentially draining rabbit hole that may not help. We have been at this since 2008 & Lyme would be my last stop on the exploration train for these symptoms. I am well aware that these words regarding Lyme are practically blasphemy to many of you. Sorry. Just my educated and experienced opinion.
  21. Dr L in MD really helped my kids when they were so sick they had to be carried in, screaming.
  22. Besides the anxiety around putting them in and getting used to "touching your eye", there should be no reason this would bother a kid with PANS more than anyone else. Both my daughters wear them quite successfully. A kid with PANS may have a more extreme anxiety pathway built-in, as their "normal" anxious behavior is like 1000% over the average person, so they may react in an "over reaction", but I bet he will do fine. If he wants them, I would give it a go!
  23. we had almost exactly the same story as above;school refusal, after other ocd had "worn off". USF helped my daughter so much woth that and general social anxiety. I cannot recommend it enough. Some of these behaviors, though organic in cause are imbedded in habit! I stayed with my daughter, then 13, for three weeks in spring 2012.
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