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filinha1

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Everything posted by filinha1

  1. Hi Chad, Thank you very much for offering to talk about your experience with PANDAS with this group - what an incredible asset you're bringing to us. I'm wondering if you wouldn't mind putting together a slightly longer introduction when you have the time. If you could tell us how you were diagnosed and what that process was like, what was the course of your treatment and what meds or supplements you continued to take after the PANDAS was resolved, to prevent a relapse. Also, any details you care to share about what life was like as a young kid dealing with PANDAS. I think you're very generous to join this forum for the reason you did and thank you again. I'm so glad that you're doing well now and wish you continued health! Best, Heather
  2. Hi There, We're in Maryland and see a LLNP whom we like very much. Our dd is improving steadily under her care. She has a monthly clinic with Dr. J and has been mentored by him for three years. I checked out this mycoplasma post because we just got labs back today and dd's IgG was 2364 and IgM was 1301. She is currently being treated for Lyme and strep and now it looks like we will be adding minocycline to the abx cocktail. PM me if you'd like contact info and details on the LLNP. She is in DC btw, two blocks from the Natl Zoo. Best, Heather
  3. This is a great reminder that all kids benefit so much from regular interaction with caring adults other than their parents. One of my aunts told me a story about being at her eldest son's college graduation party. She said she had numerous conversations with friends of his who kept telling her what a great sense of humor her son had and that he was easily the funniest guy in the class. She reported being stunned that her 'shy and quiet' son was the same guy his friends described; 'I just couldn't believe it', she said. It's so easy for kids to get typecast in a role determined by their immediate family - the 'good' one, the 'smart' one, the 'athletic' one, the 'ill' one. Sometimes the kindest thing we can do is to release them into the custody of people who allow them to express the fullness of their minds and spirits and to break loose from our loving chains. Heather
  4. This is interesting. It was one of my dd's symptoms for years; when things got really bad and we had to seek immediate help, the general loudness of her voice slipped my mind when I wrote out her list of symptoms. It also is not mentioned in the master list of PANDAS presenting symptoms,so I probably dismissed it as unimportant. And, frankly, it was the least of our worries. Now that she is being treated the loudness has gone away for the most part.
  5. Our Lyme practitioner is mentored by Dr J., who recommended a new book to her. She passed the info to me and I think it may be of interest to some of you. I hope it's ok to post a link to the book - Infectious Behavior ;Brain-Immune Connections in Autism, Schizophrenia and Depression by Paul Patterson - http://www.amazon.com/Infectious-Behavior-Brain-Immune-Connections-Schizophrenia/dp/0262016451 The author's bio, book blog and link to a video on the topic: Paul H. Patterson is the Anne P. and Benjamin F. Biaggini Professor of Biological Sciences at the California Institute of Technology. He is a midwesterner who received his undergraduate degree from Grinnell College in Iowa, and his Ph.D. from Johns Hopkins University. He is director of the Caltech joint MD/PhD programs with UCLA and USC. Current research topics in his group include a mouse model of mental illness based on the risk factor of maternal infection, the use of antibodies to treat Huntington's disease, and the mobilization of endogenous neural stem cells in the adult brain for remyelination in a model of multiple sclerosis. Patterson is a Fellow of the American Association for the Advancement of Science, the recipient of a Distinguished Investigator Award from the National Alliance for Research on Schizophrenia and Depression, and a McKnight Foundation Neuroscience of Brain Disorders Award. He also received the W. Alden Spencer Award from the Center for Neuroscience, Columbia University, and a Javits Neuroscience Investigator Award from the National Institute of Neurological Disease and Stroke Council. He was the Ulf von Euler Lecturer at the Karolinska Institute, the Jerome Sutin Lecturer at Emory University, the Burton Baker Lecturer at the University of Michigan, the James Cuozzo Memorial Lecturer at the Center for Research on Reproduction and Women's Health of the University of Pennsylvania, and was a visiting Professor at the Institute of Psychiatry, King's College London. Dr. Patterson has received several teaching awards at Caltech. He is currently serving on the scientific advisory boards of the Hereditary Disease Foundation, the John Douglas French Alzheimer's Foundation, the International Rett Syndrome Foundation, and the Autism Speaks Foundation. He is co-author with Alan Brown of "The Origins of Schizophrenia", just published by Columbia University Press. The blog for "Infectious Behavior" can be found at: http://infectiousbehavior.wordpress.com/ A video of a talk based on this work given several years ago can be found at: http://today.caltech.edu/theater/item?story_id=14483 For the record, I have no ties of any sort to the book, author or Amazon Heather
  6. Welcome to the group. You may want to try to get an appointment with an LLMD, if you can get in to see one before seeing Dr. L. Many LLMD's are familiar with PANDAS protocols and can get you started with the requisite blood tests and perhaps a course of antibiotics to tide you over until you see Dr. L. , who tends to have a longer waiting list because she is so well known. If your daughter has rages, you might try one of the NSAID's, like Ibuprofen, which with some children has a calming effect, because they decrease inflammation. If you live within an hour's drive or so from Dr. L's practice and would like to try to see an LLMD, feel free to PM me and I'll give you some names. Kindly, Heather
  7. Do they just test iron levels? Ours were low not high. I was actually thinking of this as we are Irish but his levels didn't seem concerning. This is a good description of testing for both genetic and secondary hemochromatosis: http://www.cdnhemochromatosis.ca/assets/pdf/hemochromatosis_diagnosis.pdf
  8. Your post made ME smile..I love me some good news. Congratulations to you and your daughter!
  9. It may be helpful to have your son tested for hemochromatosis, an iron metabolism disorder also known as 'iron overload' The treatment for this is simply to have blood drawn. People who are undiagnosed, and have hemochromatosis, report feeling better for 2 or 3 days after a blood draw. Most common among people of Irish ancestry.
  10. Could you have Lyme? Also, how about an immune workup with an immunologist? How did they diagnose the non group A strep? Will it show up on a rapid? or culture (do you have to order a special one? Can they do strain analysis to see if you are getting a totally different infection each time, or if it is the same strain you aren't clearing? Not sure about non-group a, but for GABHS azith or clindamycin are usually recommended for clearing carriers. My younger dd was a strep carrier, didn't clear on augmentin, but did clear on azith. I don't really believe "just a carrier" is necessarily benign. Swedo said a carrier means "no immune response to strep". (Thus pandas kids can't be considered carriers b/c they have an immune response, beh change, to strep.) The question is, does your PANDAS dd react to your non-group a strep? That's a lotta good questions I don't have the answers to! I'll get on finding out more about what I don't know. We live in an area with a lot of tick exposure, so the possibility of Lyme is a strong one. I've spent a lifetime getting medical care only if I'm bleeding from the eyeballs, but it may be time for a change given what my dd is going through. Thanks! Heather
  11. March 28th according to their temporary website: http://www.moleculera.com/index.html
  12. What is a P-doc? So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)? It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed. Not sure why you got referred to an ID doc? b/c of possible Lyme? Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.) Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list). I thought a p-doc was a psychiatric doctor, but I may have my acronyms wrong...sorry! We went to see Latimer and because of dd's positive Lyme titer, she sent us to see the ID guy at Georgetown. Why? We don't know - she did not explain. We were caught up in this previously unknown (to us), diagnosis, and we were just going along and trying to manage day to day. Seeing the ID specialist added to our confusion. As I mentioned, he disagreed with Lyme causing psychiatric symptoms, so we didn't understand what the purpose of that visit was. Was Dr. L following a protocol of some kind and crossing the T's before recommending IVIG? Did she want the Lyme treated first and was a spinal tap the way to ascertain ongoing infection? I felt I wanted to clear this first with Dr. L, but as I wrote earlier, she would not do this by phone. We were told by her office staff to make an appointment to see her. My husband and I both felt left in the dark with our only option yet another very expensive visit to answer a few questions. We thought we were entitled to these answers 1. Should we do the spinal tap on a child who is now frightened of everything? and 2. Why should we consider a tap in the first place? I have since talked to a number of parents who say that PANDAS/PANS docs are terribly overworked and cannot get to all the patients out there. I accept this as a reality but at the time, we were uncomfortable with having that kind of a relationship with a doctor. The NP we currently see specializes in Lyme. I can make a phone appointment with her as needed and that is a better fit for us. Hope this clarifies my earlier post a bit. Tx, Heather
  13. What is a P-doc? So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)? It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed. Not sure why you got referred to an ID doc? b/c of possible Lyme? Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.) Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list).
  14. Thanks to everyone for continuing to weigh in on this topic. I will say that without the risperdal, our dd would have been hospitalized - she was that out of control. She has stabilized at .75 of the risperdal and 12.5 of zoloft. I tried recently to lower the risperdal to .5 and she got immediately worse again. I have confidence in our nurse practitioner, who is mentored by Dr. Jones. I'll pursue the risperdal issue further with her and see where we go. As many of you know, deciding to use psych meds is not an easy choice; there is a reason we're all on this forum, which is often in conflict with mainstream medical treatment and that includes mainstream psychiatric treatment. I'm grateful for all the input, pro and con. tx, Heather
  15. I'm sorry I'm still new here and not hip with abreviations yet, what does cbt stand for? Cognitive Behavioral Therapy
  16. I sympathize with your plight completely. When our dd was at her worst last fall, she trashed our house, threatened to kill herself while holding a knife, spat at us and told us she wished we would be murdered. In her case the extreme rage was a result of using the sari Celexa (for ocd), before we really understood the negative effect it can have on many children with PANDAS/PANS. Our p-doc worked with us to keep her from being hospitalized, which in our case meant more meds. We put her on Risperdal increasing to 1 mg/day and quit the Celexa. It did work to calm her and kept her and us safe from harm. Many times I felt nervous if she wasn't directly in front of me, for fear she might do something to me. I'm not advocating the use of psychotropic medication; I wish we hadn't started it sometimes, in retrospect, because it makes it more difficult now that she is being treated with abx, to really know what is working. Given our knowledge at that time, intent to keep her out of a hospital and prevent serious damage to her person and our home, we used the Risperdal. And it worked. My take on these meds is to assess your situation by looking at what you can and can't deal with as a family. Can you keep her and her siblings safe during this exacerbation? What are the alternatives...hospitalization, having a relative live with you (someone strong enough to physically contain her), having her siblings stay with a friend or relative? Like you, we physically held our daughter at times to contain her. Like your daughter, ours hated it. Manhandling my child like that goes against every fiber of my being. I felt appalled and guilty but I did it anyway. In the end I'm glad she is of an age that she is small enough that I could do it. What we literally did was grab her arms from behind and cross them over her chest, try to lower her to the floor in front of us and then hook our legs over hers to prevent flailing. I learned to cant my head sideways because dd would bang her head repeatedly back and forth. (My nose is still intact:). Usually we'd talk calmly and agree to release one arm if she agreed to sit still, then the other arm etc. The worst part of the process was in the five minutes after dd was contained - it was when her fear was at its peak. After ten minutes I think the adrenaline starts to decline - nothing bad has happened after all - and there is some small reduction in fear and rage.In all we probably had to do this 7 or 8 times and then the statement "I will hold you if you can't calm down" became enough to stop the destructive behavior. Dd still takes risperdal 0.75 mgs a day, 6 weeks into abx treatment. I tried to lower it recently to 0.5, but her irritability increased noticeably. Every week that passes though, she is a bit better so I'll keep trying the lower dose until she - hopefully - doesn't need it. You have my heartfelt understanding and wishes for your the return of daughter's health and happiness. This is a heartbreaking illness to go through - for everyone involved. Heather
  17. My DD10 has buds on her chest enlarging now. What is that a symptom of? Puberty!
  18. My daughter fell off the cliff at age 10 also. My guess is that the combination of pre-existing immune disfunction (diagnosed yet as such or not), and the changing hormones associated with the onset of puberty is the game changer. I don't know this to be factually true, it's a hunch.
  19. Thanks LLM! I vacillated between the biology and the Greek Hero's courses and signed up for the biology. I have a nursing degree and never got to really enjoy the biology class because the rest of the course workload was pretty heavy. That site is fantastic; I'd never heard of it before and I'm excited. Heather
  20. Hi Kara, That is fantastic news...I send your daughter and your family my best wishes for continued health and happiness! Your news is inspiring for the rest of us still on the journey. Thank you for the amazing support you have given to newbie parents like me. Kindly, Heather
  21. Thanks very much for the info! I read and really enjoyed your article 'Holy Mthfr' - It was so well written I might even be on the verge of starting to understand some of this stuff...
  22. Awesome, thanks. I Know I'm pushing my luck here - and your patience! - but I looked on both Yasko and Lynch's sites for methyl b12 at 1000 mgs and couldn't find that either. Is its mcgs or mgs? Thanks again!
  23. Hi LLM, Where are you buying methylfolate in small doses such as the one your daughter is taking? I went to Dr. Lynch's site and can only find it in 800mcg doses. Even breaking down that dose wouldn't get me that small of a dose. Thanks in advance.
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