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marilina

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  1. thank you bigmighty the problem is that my daughter has not ONLY PANDAS, but autism and PANDAS togheter, so PANDAS and other immune-issues so, what work for PANDAS can work not for autism-PANDAS kids.....
  2. hello all I thought I would be happy because soon I should finally do the IVIG to my daughter As you may know here in Italy there are NOT doctors experienced in PANDAS But we are getting the chance to make IVIG, paying them, as my daughter has other immune problems the problem is that where I will do the IVIGs they'll start with a low IVIG dose: 0.4g/Kg I know that low-dose IVIG may help for immune problems, but they are pro-inflammatory for PANDAS Please can you help me to find recent studies that support the use of high-dose IVIG (at least 1.5 g / kg've read) for PANDAS? marilina
  3. yes. My daughter has autism and PANDAS she also has low IgG1, and other immune-issues inositol is good , very good for her, helping a lot for autism-related-OCDs (specially in the past) not so good for PANDAS-related-OCDs, because, as you know, the PANDAS-OCD's are ralated to immune system imbalances but it still helping her, even if it does not stop OCDs as in the past(It is logical : PANDAS-OCDs have a different etiology) for the same reason, we see that Enhansa is not good for her Enhansa has antinflammatory efects , but it is also an immunomodulatory supplement so, with Enhansa we stimulated her immune system, and this has had bad effects for her moreover , she has phenol sensitivity, and Enhansa is full of phenols......and although we are using No-fenol enzymes, it was not enough to counter phenols effects....so, we stopped it
  4. I must say that I have found numerous post regarding low IgG1. (this is one:http://www.latitudes.org/forums/index.php?showtopic=5162&st=0&p=36504&hl=igg1&fromsearch=1entry36504 ) MAYBE is something that is not so common, in fact have low IgG1 is considered rare. it is interesting that PANDAS parents may experience the deficiency of these immunoglobulins. My daughter was also deficient in IgG1 what I have found so far is this: - That an IgG1 deficiency is rare (I mean not associated with other deficiencies) - That being deficient in IgG1 means that you can not fight viral and bacterial infections, where viruses and bacteria have specific protein: specifically, for example, there would be problems with the toxins produced by tetanus and diphtheria. but not only ... there are other viruses and bacteria that give problems with this deficiency - That the IgG1 deficiency is treated as CVID My daughter has had serious problems last year with the thetanus-shot. and therefore a lack of IgG1 may explain the severe CNS-reaction that she experienced . Also explain to me the devastating reaction to DTP vaccine at 10 months , vacine that has dropped her into Autism I ask you parents: HOW MUCH low are the IgG1 in your children?
  5. I escuse me for my English for the "low energy issues" I think you have to check her about mithocondrial issues : these are childs with "energy issues", ipotonic muscles issues, ecc...... EBV: when you do the test, usually there are more data: EBV IgM EBV VCA-IgG EBV EBNA-IgG when you see high EBV IgM the infecion is occurring when you see high EBV VCA-IgG it means that she has had this infection in the past: EBV VCA: are antibodies against the capsid of the virus, the coating of the virus usually when you have high EBV-VCA antibodies you have high EBV EBNA IgG too, because the body produces antibodies even against the viralDNA: EBNA are antibodies against the DNA of the EBVvirus. my daughter can't produce antibodies against the viral DNA: due to immunodeficences she can't fight viruses........that's the why we have to help her with antiviral therapy. hope this helps
  6. we are doing antiviral therapy with Acyclovir for EBV: 200mg 4 times a day my DD18 can't react to the viralDNA of EBV she is on Acyclovir since 1 month, and she is much better, BUT, we have started a new therapy too, to improve her immune system : TSO ( tricuris suis ova) (there is one study of NIH actually that try to register improvements in autism, OCDs, ecc....<) so we have in fact iprovements: - no tics - no sleep issues - much less anxiety - improvements in OCDs - improvements in mood BUT I can't say if these improvements are connected with antiviral therapy or TSO: both toghter I think....
  7. yes but we have anti D1 very very high I understand that D1 receptors activate the action, while D2 receptors inhibit it. D2 receptors are the same involved in Parkinson but in fact the problem is always with too much dopamine in brain: for us when my daughter starts I call her "broken record" I don't know if behavioral problems with the D1 or D2 is also very different, since in the first case the action is restarted continuously, repeated, and in the second case the person is blocked in the same movement ..... established the PANDAS'issues, we found in my dougheter a congenital immunodeficiency, an inability to properly respond to viruses, so we are using acyclovir due her inability to respond properly to infections. simultaneously we use daily supplements (we are doing Yasko protocol(), and do not ever miss inositol and 5-htp, in addition to melatonin. to "reeducate" the immune system we started about two months, the TSO (tricuris suis ova).
  8. my daughter is taking antiviral acicloviral since 2 days the same night he started taking the antiviral she fell asleep and slept all night, the first calm night after 5 months of insomnia and OCD. a coincidence?: second day of antiviral second night of peace, not to mention that during the day OCDs are decreased in intensity and frequency. at this point what emerges is that she can't react to viruses. particulary about EBV, her condition is immunedeficiency because in four years of exposure to the virus(2006), she did not produce antibodies against the nucleus, DNA-EBV virus. what aciclovir is doing had not been done by corticosteroids, nor by antibiotics
  9. thank you wornoutmom yes, we are thinking of coming to America, because here IVIG and PEX are impossible to do if not on the list of some rare diseases. "be confused" is say little. is practically impossible not to produce antibodies EBNA if you come in contact with EBV she has the VCA IgG positive,but the only cases in which type EBNA antibodies are negative are two possibilities: 1) the person has not come in contact with the virus 2) the infection is under way, but then they should be positive IgM . test results of my daughter does not fall under any scheme I realized until now that she is in a condition with two contradicting factors: 1) she has an immune system hyper, because it produces too many antibodies against dopamine D1 receptors and is positive for PANDAS 2) her immune system is unable to react to viruses, it has very low CD8
  10. in May my daughter did a series of tests, after dr.Cunningham-test that showed positivity for PANDAS and very high levels of anti-D1. IgG are positive for EBV IgM are negative, indicating that the infection is not ongoing, but the thing that has surprised our immunologist is that although she is positive for EBV she is not positive for antibodies to EBV She is very deficient in CD8 lymphocytes, which means that she is unable to react to viruses. I mean, it is as if she is in a state of chronic EBV infection. Where is the virus? EBV enters the body of all of us and take place in the lymphocytes DNA, . in conditions of immunodeficiency it become aggressive again. My daughter did a cycle of 10 days of corticosteroids, with the improvements that you reported. it is possible that the suppression of the immune system by corticosteroids did well by giving her a pause, but at the same time may have left the field free for EBV: after the beneficial effect of corticosteroids in fact everything is getting worse, worse than before.
  11. I refer to this 3d. we sometimes have doubts too: the problem is that these behaviors are not related to classic obsessions, compulsions , like OCD affecting the cleanliness and order, but it's as if my daughter had the flash of the day passed, then the actions or positions she saw during the day she has the irrepressible compulsion forces to repeat like a broken record :overnight. matter of life or death, says Vickie,that's true, and if we try to stop it is as if we try to kill her. the OCD we knew, those related to her autism, we could deal them with behavioral interventions, redirecting her attention, etc. .... and we always managed to avoid drugs and psychotropic drugs. compulsions of PANDAS we can not stop. in the worst moments it was almost as if she don't recognize us as parents : in those horrible moments are a hindrance, we are enemies, we can not have a relationship with her. For months this thing is going on, and unfortunately the worst times are at night, where the anxiety rise. I sometimes think that at night she can not relax and sleep because sleep for her is a little 'how to die ..... the only respite was the cycle of 10 days of corticosteroids. NOTHING else has worked, and I am convinced that more than the IVIG my daughter would need PEX, to clean up the blood.but here in Italy there is no one able to help.
  12. the second day of betamethasone things started to improve a lot tics disappeared, in the evening after 10 minutes he falls asleep, during the day we can live an almost normal life she is on betamethasone since 10 yays: since three days we had to reduce, stop slowly , and already things are getting worse again. especially the sleep and again separation anxiety ...." by manual" I have to expect a further worsening?
  13. since 4 days my daughter is taking corticosteroids she is taking betamethasone (Bentelan) not prednisone and I must say that there are no GI side effects, but has at times during the day some mood swings. the "steroid burst" is for 5 days. I must say that the dosage is low compared to what I read here on the forum. on the basis of the conversion table http://www.globalrph.com/steroid.cgi 1 mg betamethasone match 8.33 mg prednisone, and I think is low dosage (18 yearas old) But I must say that except for the second day when things seemed to worsen, the first, third and fourth day, things are going better. eye tics disapperead, reduced the rituals during the day, but especially when she goes to sleep, goes to sleep and stop stay awake doing everything..... we continue for another week, low dosage....
  14. I am close to you Nancy, although from Italy .
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