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Everything posted by T_Mom

  1. Personally -- I am glad to see this thread, and I hope it lights a fire under every one of us to do more to get the word out on the crippling nature of this horrible nightmare of an illness. We have no idea about the story behind this family's experience--if diagnosed correctly or not. Still, there is no doubt that PANDAS triggers OCD -- and there is no doubt that OCD can end up in uncontrollable raging if the rituals are interrupted-- Our d has been that PANDAS child. With OCD morphing into what could be seen as Obstinate Defiant Disorder. (Oh, and yes, she did a 180 in all behaviors 2 years ago with IVIG and antibiotics, go figure...) I am glad that some have never had to watch the transformation in their PANDAS child, I pray you don't have to, ever-- but it is a reality for many PANS - PANDAS children that Out-of-control OCD can lead to raging when they are unable to complete the OCD rituals. Believe me, it is not pretty. It goes without saying, we need to get the word out about PANS so that suffering children (ours and others) are able to GET THE TREATMENT they so desperately need. That is where our efforts need to be -- -the severity of the reaction in a PANDAS child can be devastating and it may be "internalizing" or "externalizing" in nature.
  2. Hi -- Our oldest daughter had a similar tic show up, I called it mouth stretching. If it has been there for 3+ weeks I think I would definitely call your PANS treating doctor and inquire about upping the antibiotic. Is he on "full strength" as if he had strep now? If not, you may want to at least try that for four weeks -- and see if there is a change. Also, in my opinion, a trial of advil for a few days may be an idea--if neither of these work then I would be asking for a steroid burst to see if that would help. A 12 year old boy would definitely be bothered by such an obvious tic. Good luck.
  3. I wonder if it went via Dr C.'s blood lab, and corresponding blood results -- tied to PANS indicators -- if there would be a correlation.
  4. Dr. Leckman is a man of integrity.
  5. YES -- we need more research -- We also need reporting by the doctors about the results they have seen-- Imagine this: An article which presents case-study reports of the key PANS treating top-5 doctors. How many kids for the case study if it was done by the top five PANS treating doctors? 25 cases? 250? 1000? You get my point. We need those who know, and have seen to report. The doctors to report on and write about their experiences and treatment effects for the medical field, to present at conferences of ALL types, and to educate. Research in controlled studies is critical and funding is needed, and with the recent focus on biological causes of mental illness -- as well as the NIMH taking a stand that they will pursue a line of inquiry to find the cause behind the mental illnesses in the "DSM" , Dr. Insel being at the helm, and Francis Collins (NIH) being focused on the brain, it is the time. I so dearly hope -- as we (on a personal note), appeal our insurance company for an immune-modulating therapy which is greatly needed.
  6. tpotter, I am so sorry -- You have been such a strong advocate for your family for so long, Prayers sent your way.
  7. I hope the tide is turning -- with the increase of evidence-based outcomes (ie., kids getting their lives back.)
  8. What the heck? "Streptozyme" ? Why hasn't this been mentioned before to us? I have been at this for four + years and have never heard of this test--thanks for mentioning it!
  9. OK, how did you do it? I have the same issue.
  10. Oh my goodness Norcalmom, that description of the "wonder drug" sounds incredibly encouraging, and YES some of us need to send our kids' blood to this doctor--to see what he might make of it-- this is very interesting. IF anyone gets in touch with him, we would love to send in samples to be screened. (and my youngest is in full raging OCD exacerbation--with tics, perfect time!)
  11. Great find! Does anyone know what are the : “We already have drugs that act on those mechanisms. .... drugs that manipulate calcium channels ......" ?
  12. Oh my Goodness!!! Dr. Yolken, what an amazing doctor!!! ....He needs to be included in the PANS discussion table, and to be in touch with the Swedo group- (IF he isn't already.)
  13. This man is BRILLIANT !!! Thanks for posting this TPotter...Thank you Dr. Naijar !!! ___________________________________________________ The Washington Post today had an article on the DSM V , the following quote was from that article: "Thomas Insel, director of the National Institute of Mental Health, the largest mental health research organization in the world, set off a furor when he said the manual lacked validity. He said the NIMH would shift its research away from the DSM categories — and their symptom-based criteria. Instead, new research would focus more on areas such as the biology of brain circuits and the behavior they produce, as well as emerging clinical data. While DSM has been described as a ‘Bible’ for the field, it is, at best, a dictionary, creating a set of labels and defining each,” he wrote in a blog post." That is us !!!
  14. IVIG and Plasmapheresis -- ARE these typically covered by insurance for lyme ? thanks
  15. Our oldest d (13 at the time) had intrusive thoughts that were stopping her from focusing at school, or at home--constant swearing in a circular fashion at God. ALL the time, as one of her OCD symptoms during her last episode. She had plasma pheresis and within two weeks she reported that all of the intrusive OCD thoughts had STOPPED. These had been literally crippling her for 9 months. A huge relief. If the OCD intrusive thoughts ARE PANS or PANDAS caused then the treatments for PANS/PANDAS should work, and in my opinion should be at least tried to SEE if they will give your child a break. I would start with the month of antibiotics, move to steroid burst, and on to IVIG or pex if possible, my best to you--
  16. I was just thinking that someone needed to post a HAPPY MOTHER'S DAY on the forum and found it had been done-- Thank you Heather --beautifully said. I would like to add-- PANS Mothers Thank you for lending me your courage over these past four years-- for staying up with me on late nights when I compulsively tried to find the key, the solution to this sudden onset disorder, which was entirely disordering our lives. Thank you for being there for phone calls -- listening and letting me listen, lending an ear, an hour, to understand, counsel and encourage. even when we had never met face to face. You were there when I reached out. Thank you for reaching out through this forum -- for sharing your experience, your observations, your insights which compiled to be a testimony about the PANS experience (has anyone else noticed more then 100,000 posts on PANDAS/PANS!) We have told our story together, the compiled evidence of lives changed, hurts healed, and research validated in the stories of mothers, and fathers, and their children. Thank you.
  17. Wow-- thanks everyone for the great suggestions here-- The warning is on the side of the bottle, it is made by Schiff, Melatonin Ultra, "3 mg Melatonin, Theanine, GABA & more" on the side it reads: Warning: not intended for use by pregnant or lactating women, individuals with autoimmune conditions, depressive disorders..." So, anyway, I have no idea if that means PANS kids or not? I also wonder if it is too strong a dose perhaps??? and 2mg may be better to try? Good pts all re: magnesium, zinc possibilities SFmom and all--THANK YOU. LLM I will revisit that thread, thank you! Whew, it is a tough time but glad to have this forum to chat with.
  18. I wish I could say it was PTSD...but I thought I had that 4 years ago....with the very first episode! Now, I would characterize the whole experience as Continuing-PTSD... It is horrid. FallingApart--you are not alone. We have experienced what you describe, so many of us-- Yes, try to get some respite somehow, even if it is only time to cry in the car -- (which I have started doing this month almost daily.) This IS hard, hard and dark, and a horrid illness. What I do is often remind myself that children have gotten better from this--that it is researched and that many, many parents will attest that there are treatments which bring their children back--and then hold on to HOPE. And pray.
  19. My youngest is still in the midst of exacerbation (it has been a terrible year, really.) Home since 2/18. When she rages it is destructive. (Rages ARE far fewer then they were in Jan--Feb...thankfully.) Currently on Augmentin 2000 and 250 Azithro. She has not been sleeping for the past week--until around 1 or 2am. Suggestions? We tried Melatonin until I read it said not to use for those w/ autoimmune conditions! Other ideas? thanks.
  20. Look at this!!! Sounds like PANS-- http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html
  21. Norcalmom, this article be Dr Najjar and colleagues is GREAT!!! I just wish I could understand half of it! (where is Buster when you need him?)
  22. Hi Nitshel, my heart really goes out to you as we all understand the frustration of trying and only finding that yet another unwanted outcome occurs...(like the vocal tics.) The truth is, at this point there are few sign posts showing how to determine if there is an underlying infection--my d with our first episode showed up on the MRI with a sinusitis, voila, treated with antibiotics and steroids and gone. In reading your posts the question comes to mind -- was there an obvious trigger to the first episode for your son in November? Did he get strep? Was he around kids with strep? Do you think this is a PANS reaction via lyme? With PANS many of us see our kids flare when they are around others who are ill, even without strep. Have you read the Murphy article on psych drugs and PANDAS kids? -- might be worth seeing if you have not. I am so sorry you all are going through this and hope it comes to an end soon. Have you considered the Cunningham bloodwork>
  23. I received this note today, God Bless Dr. T. www.radiopandas.com **LIVE TONIGHT** 9PM (ET) • 6PM (PT) A special conversation with Brain on Fire author, Susannah Cahalan (all about encephalitis) with special guests, Dr. Cunningham, Dr. Frankovich and Dr. Trifeletti.
  24. This is amazing and wonderful! If only I lived in Mass. I would be there in a heartbeat-- thank you ALL who contibuted to getting this moving...what can we do to do this in other states??? Is there a protocol to do, could one be written up and distributed and we could take it, do it, and contact our own congressmen/women across the country? thanks
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