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jferinga

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  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 come from strep out mycoplasma,; She was positive with IGA & IGM for mycoplasma so I kept researching this. The California doctor referred me to a doctor in New Jersey, Dr. Bransfield, who wrote an article in autism. In the article he mentions kids with autism who were positive for various bacteria/viral infections. He also lists, and cites research, bacteria/virus that are associated with autism along with a over 30 bacteria/virus known to cause neuropsychiatric symptoms. Message me I can send the research.
  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 PANDAS/PANS.
  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 the broad overlap of symptoms and the fact that there was a little of this and that but not everything. Strep was researched first due to the existing research and knowledge about rheumatic fever and syndenham's chorea. Parents discuss "other" triggers/infections. Early on I had a list of 6-7 bacterial/viral infections that may contribute. Parents also mentioned on here that tests results were sometimes negative then positive. The doctors who gave best results were immunologists, infectious disease, and lyme doctors. Parents/doctors talkign about long term antibiotics, vitamins, low sugar diets, gluten/casin free diets, etc. Inflamation is an issue. When we tested we were negative on everything except mycoplasma. Positive strep in 2011 with an addition 6 months of pneumonia/ear infections. Researching strep: there are 7 types (strains) I found with multiple variations of each. Strep A-G. Strep may cause ear infections and upper respiratory infections, depending on the strain. Doctors test for Strep A mainly. Mycoplasma causes upper/lower repiratory infections and ear infections. Doctors do not routinely test for mycoplasma unless pneumonia is suspected. She had pneumonia follwed by multiple ear infections and abx did not take care of it for 6 months. Lots of research conducted and found research showing strep and mycoplasma and a list of 20+ other bacteria and viruses that are KNOWN to cause neuropsychiatric symptoms in people, adults and children. In another forum a parent posted research about immunizations and CDC statistics. In the article there was mentioned that immunizations and vacinations are contaminated with mycoplasma bacteria, approximately 55%+. I started checking mycoplasma. It is very hard to detect. Based on best doctors I came across research on chronic infections and mycoplasma and treatment types. I found research linking chronic infections and autism; or shall I say research showing many children with autism, 58% in one study, tested positive for one or another type of chronic infections. Many of these chronic infections are identicle that PANDAS parents are reporting also. I thought back to the private school I taught at for children with autism. Many parents used a GFCF diets and talked about success. I learned that gluetin and casin cause inflamation and sugar feed the bacteria and viruses. In doctor consults, PANDAS friendly doctors, that supplements (vitamins), low sugar diets, Paleo diets, and other dietary modification are used along with propylaxis abx. This was very familiar to treatments of intracellular infections. Intracellular infection research showed that with one time abx treatments there is 100% relapse, other were not as high although above 90% relapse. One doctor, in his study, demonstrated 6 consecutive 6-week treatments were needed to get relapse down to 18%. Also noted, abx had to be alternated since with intracellular infections there are several areas in the cells that the abx may accumulate in and each abx is different.
  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 fact that there was a little of this and that but not everything. Strep was researched first due to the existing research and knowledge about rheumatic fever and syndenham's chorea. Parents discuss "other" triggers/infections. Early on I had a list of 6-7 bacterial/viral infections that may contribute. Parents also mentioned on here that tests results were sometimes negative then positive. The doctors who gave best results were immunologists, infectious disease, and lyme doctors. Parents/doctors talkign about long term antibiotics, vitamins, low sugar diets, gluten/casin free diets, etc. Inflamation is an issue. When we tested we were negative on everything except mycoplasma. Positive strep in 2011 with an addition 6 months of pneumonia/ear infections. Researching strep: there are 7 types (strains) I found with multiple variations of each. Strep A-G. Strep may cause ear infections and upper respiratory infections, depending on the strain. Doctors test for Strep A mainly. Mycoplasma causes upper/lower repiratory infections and ear infections. Doctors do not routinely test for mycoplasma unless pneumonia is suspected. She had pneumonia follwed by multiple ear infections and abx did not take care of it for 6 months. Lots of research conducted and found research showing strep and mycoplasma and a list of 20+ other bacteria and viruses that are KNOWN to cause neuropsychiatric symptoms in people, adults and children. In another forum a parent posted research about immunizations and CDC statistics. In the article there was mentioned that immunizations and vacinations are contaminated with mycoplasma bacteria, approximately 55%+. I started checking mycoplasma. It is very hard to detect. Based on best doctors I came across research on chronic infections and mycoplasma and treatment types. I found research linking chronic infections and autism; or shall I say research showing many children with autism, 58% in one study, tested positive for one or another type of chronic infections. Many of these chronic infections are identicle that PANDAS parents are reporting also. I thought back to the private school I taught at for children with autism. Many parents used a GFCF diets and talked about success. I learned that gluetin and casin cause inflamation and sugar feed the bacteria and viruses. In doctor consults, PANDAS friendly doctors, that supplements (vitamins), low sugar diets, Paleo diets, and other dietary modification are used along with propylaxis abx. This was very familiar to treatments of intracellular infections. Intracellular infection research showed that with one time abx treatments there is 100% relapse, other were not as high although above 90% relapse. One doctor, in his study, demonstrated 6 consecutive 6-week treatments were needed to get relapse down to 18%. Also noted, abx had to be alternated since with intracellular infections there are several areas in the cells that the abx may accumulate in and each abx is different. more to come.
  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 June 2011 she had recurrent ear infections diagnosed as otitus media. We treated with Augmenting, 2000 mg per day for 20 days, then Azithromyacin, 100 mg per day as a prophylaxis. We also used olive leaf extract, with 18% oleuropein, December 2013 through current with dosing was 2-3 times per day. We also started a liquid multivitamin called Calm in December. We does this 2x per day, recommended dosing was 1x per day. April 2014 we we stopped antibiotics and lowered the vitamins to 1x per day. Our pediatrician at Kaiser was very unsympathetic and woudl not help in the beginning. The pediatrician's sister-in-law had her two grandchildren diagnosed with PANDAS. We have given the pediatrician lots of research over the months. The pediatrician finally changed teh diagnosis to "autoimmune" and dropped the OCD/TIc disorder.
  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. You choose.
  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 test Blood draw for research and clinical(CBC with diff, Chem 20, quantitative immunoglobulins, iron panel, strep panel & HLA) We have heard that mycoplasma, coxsackie, entervirus, bartonella, babesia, herpes, erlichia may also cause the development of OCD/motor tics. Any additions?
  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 exist. I would go to pandasnetwork.org and look for a doctor on there. If you can seek participation in a clinical trial. Pm me and I can give you some numbers.
  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 none have heard, or considered for that matter, of infection or viral based mental illness. If you ask for accomodations under a 504 plan the success of it is dependent on the fidelity of school staff in implementing it. With respect to a Functional Behavioral Assessment. An FBA is used in conjunction wiht a behavuior support plan to determine the function of a behavior and teach replacement behaviors that serve the same function. For example: a child with autism may become over stimulated. The student wants a break and asks the teacher for one. Initially the teacher says yes. When the number of breaks becomes "excessive" and the teacher starts saying no the studnet then uses other means to obtain a break: This example: Behavior-asks/requests a break Function-obtain a break Consequence of behavior-gets a break Since the number of breaks are now excessive or interferring with instuction and education progress the teacher now denies the student breaks. The student now assaults another student or staff, throws something across the room or other highly inappropriate behavior. The teacher responds by "sending the child to the office or out of the room". The student now learns that to ge this break he must assault someone or other inappropriate behavior. The student starts exhibiting this behavior consistently so an FBA is performed. New Behavior: assaulting staff/throwing objects Function-Obtain a break Consequence-sent to office/out of room effectively obtaining a break (Keep in mind the old behavior no longer works in obtaining a break). Once the hypothesis is conducted and tested. For this example the schools finds the funtion is for a break. The behavior support plan might include teachign the child to "request" a break and the teacher is expected to give a break. There may be counseling goals which teach destressing techniques to the child. While this example is based on a teacher and classroom example many behaviors are learned in the home in similar manners. Have yoru personal psych work with the school psych. If educational progress is not being made and or the plan is inappropriate you can always go to due process.
  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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