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jferinga

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Everything posted by jferinga

  1. When my daughter was diagnosed I was surprised at all the various symptoms we saw and also other parents reported, confirmed PANDAS dx. I came across research about mycoplasma. A doctor in California conducted research in mycoplasma, chronic fatigue, and autism. Very interesting since I am a special education teacher. The researcher identified chronic infections in a group of children diagnosed with autism. I emailed him looking for a referral/reading for my daughter since she had pneumonia, step, and multiple ear infections before onset. Her diagnosed illness typically com
  2. I teach in a restrictive setting public school for children with severe emotional and behavioral disabilities. When we had onset I took videos and showed them to several school psychologists. Our most experienced, with clinical work in mental health, classified the behaviors as odd, bazaar, and strange. They aslo stated, "I would not know what to do with those behaviors." When our daughter was dx with PANDAS I shared information with 3 school psychologists and several SELPA psychologists who have never heard of PANS or PANDAS. I do not think school psychs know how to deal with PA
  3. This is what we have done/learned: Since starting on this forum I have done much research. What I have learned/discovered so far, some are just strange facts learned or those that pointed me into a different direction. I am a special education teacher and do not understand why PANDAS was never discussed in any of our classes. Ok so since the PANDAS diagnosis/suspicion I have learned that the NIH has several triggers listed on their site, strep was one. Based on special education experience working with children with psychiatric disorders and very familiar with autism I first noticed
  4. Since starting on this forum I have done much research. What I have learned/discovered so far, some are just strange facts learned or those that pointed me into a different direction. I am a special education teacher and do not understand why PANDAS was never discussed in any of our classes. Ok so since the PANDAS diagnosis/suspicion I have learned that the NIH has several triggers listed on their site, strep was one. Based on special education experience working with children with psychiatric disorders and very familiar with autism I first noticed the broad overlap of symptoms and the
  5. I have been looling for alternatives also.
  6. We know the Calm vitamins helped. When she did not get the Calm she was distinctly more active. The olive leaf we believe helped. We could tell much more in the beginning that it helped. There was lots of research that olive leaf is a good antiviral and antibacterial. We had difficulty finding one that was tested and accurate. Some olive leaf claims a certain percentage and they actually have much less.
  7. Some of you may know the story; however, the initial info: Onset was November 9, 2013. Initial symptoms were mostly repettive body movements, hopping, jumping, etc. Vocal tics starts in late December, early January. We compiled a complete list of behaviors, 30 in total on a daily basis. We were seen at the NIH December 13, 2013. We never had a positive strep test except in January/February 2011. Our child had pneumonia in December 2010. In 2011, her brother was diagnosed with rheumatic fever and her otitus media. February 2011, she had a positive strep test. From March 2011 to
  8. Our child's psychiatrist was very helpful in working with the pediatrician. Outside that she has not really "produced" much. She has advocated for us that PANDAS is real. She also aided in gettign the doctor to upgrade the diagnosis to "autoimmune". Our psychiatrist prescribed an SSRI drug. I gave her research demnonstrating that SSRI does not work well with PANDAS kids. We tried a very low dose as recommended and stopped use when no results were seen.
  9. We were recently at the NIH and met Swedo and several other doctors on her team. They provided clarification on the antibiotic use (propylaxis). They stated that the initial round of antibiotics should be strong enough to rid the body of antibiotics. The propylaxis antibiotics are to prevent reinfection (reinfection was the key) so the body can heal the damage from the autoimmune process. We have explained it in this manner to others and they finally understand. Our PED didn;t like propylaxis abx however did understand the reasoning. We mentioned, do the propylaxis or do ivig/pex. Yo
  10. We returned and have confirmation. We are now working with our medical insurance provider to get coverage of IVIG. When all results are receivedI will update.
  11. Hi. We have Kaiser also. We are navigating this journey with them with a NIH diagnosis and positive autoimmune test. Do you have an update on Kaiser?
  12. Can I get an update on Kaiser. We have Kaiser and are havign difficulties even with a NIH diagnosis.
  13. Have you had any luck with Kaiser? We have them in California and are struggling also.
  14. The other tests are being done. I was not aware the Cunningham panel is being done.
  15. Our daughter was put into a study at the National Institute of Health earlier this month. We received a call with an immediate opening; so we are here now. She has tested negative for strep 4 times now. What other infections have you found, heard of, or treated in your child that that developed OCD/tics that, once treated, caused a remission of symptoms? The NIH has indicated we can have additional testing done. These are the current tests: EEG: awake and at night Sleep study EKG & ECHO Brain MRI Lumbar puncture; Only if we have abnormal sleep findings throat swab, urine tes
  16. We read a a book called Saving Sammy early on. We then followed up and read her second book. There are so many thigns when dealing with a school. I would speak very specifically about what is going on and avoid talking about experimental treatments. They are mandated reporters and if they believe or suspect that needs are not being met they are suppose to call and make a report or face the possibility of losing their professional credentials. With that said, PANDAS is not a "recognized" disorder or disabilit. It is not in the DSM IV or V therefore to many practicioners it does not
  17. Keep in mind most school districts will do an FBA when the behaviors are new or escalaing. They may not feel one is necessary. If you can get an IEP rather than the 504 plan do it. The IEP you will have much more support with behaviors and the possibility of counseling services. If behaviors are sever the school can make referral for outside services in the home also. If you get a behavior support plan with a FERB (Functionally Equivalent Replacement Behavior) being taught there are many more accomodations that teachers have latitude in using.
  18. Ok so I work with children in a seperate facility with diagnosed mental health issues which includes many DSM IV diagnosis. PANDAS and PANS is not a recognized disability as identified in IDEA. When I look at the symptoms associated with PANDAS/PANS/PITAND I can see a child with severe symptoms meeting special education eligibility under several disabilities due to the wide range of sympromts that can exist in PANDAS/PANS/PITAND. IDEA does not list PANDAS so walking into a school with a "PANDAS" diagnosis will not get special education services. I have spoken to several psychologists and
  19. How did they come to HHV6 and what were the symotoms?
  20. A functional behavior assessment will only determine the function of a behavior. For example escape, avoidance, to get something. PANDAS is not a "recognized" disability as it is not in the DSM IV and is not in medical books with an approved treatment plan. If the school is performing an FBA it is to find a reason to qualify/determine elgibility for special education.
  21. cara615I am so happy for you. Did you see the big change in tics after changing the antibiotics?
  22. What is the name and location of your PANDAS specialist?
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