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Everything posted by Mayzoo

  1. Kiddo was on acyclovir or famvir for years. Her titers did not improve and her symptoms did not improve enough to actually point to the antivirals as a positive. Her Rubella did go down with amantadine (169 to 14), but her coxsackie, and epstein-barr did not improve that I could tell. Her epstein barr was over 600 when we started and over 600 when we stopped, so if it went down it was not discernable on that test. It is possible her EBV titers were say 1200 in the beginning and 700 in the end, but that would not register on the test as both are over 600. Her symptoms have always been
  2. I am debating about getting the vaccine for my daughter, but still on the fence. Sadly, anything you do to reduce the inflammation, (ibuprofen, steroids, turmeric, etc...)will reduce the effectiveness of the vaccine as the inflammation is a normal part of the vaccine working. But even some reduced effectiveness is better than I none I suppose. Hence, why I am waffling--we are not even at base line right now, and my kiddos immunologist will not weigh in on his experiences thus far, so I am fearful of the effects the vaccine will have. They do not recommend Ibuprofen w
  3. We have been seeing Dr. Rao since 2013. He is now backing out of treating PANDAS with antibiotics. We just tried to ween our kiddo off antibiotics and ended up in a flare that is similar to catatonia except with frequent screams. In the recent past we tried Dr Gonino and he stated prior to the appointment he would refill her antibiotics, but after the appointment refused to refill them. Anyone have any suggestions for semi-local (DFW and outlying areas) that will refill antibiotics?
  4. Here a few: ASO titers https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=strep_aso_titer_blood Cunnigham panel moleculeralabs.com/cunningham-panel-pandas-pans-testing/ CRP for inflammation markers: https://medlineplus.gov/lab-tests/c-reactive-protein-crp-test/ And diagnostic critera: https://www.moleculeralabs.com/pandas-diagnostic-criteria/
  5. My kiddos last vaccine was when she was 18 mo old, and she was conservatively vaccinated even then. We only did the vaccines that I was given as child in the 70s. She still has PANDAS and autism. She is also PID (immune deficient), so that may have played a factor in how her body processed those early vaccines.
  6. My DD would need to go under general anesthesia due to a variety issues, which includes her PANDAS. Thankfully, we have not had to do this yet.
  7. Aperomics is 750.00 + 75.00 shipping per test. Some insurances are covering it, some are not. Ours is not. The one you linked looks like it does only viruses. Once I get results from the aperomics, I will post something on here about it thoroughness.
  8. Has anyone tried the lab test named Aperiomics yet? We are going to have the blood and nasal/throat swab done on August 14th. https://aperiomics.com/ Standardized laboratory testing fails, up to 75% of the time, to identify pathogens that cause infection.. Aperiomics identifies all known pathogens in a single test through next-generation sequencing of DNA/RNA from blood, swab, urine, fecal, tissue or other samples. Deep next-generation sequencing (N
  9. Since MRSA can be airborne, it seems reasonable your son could be affected by your daughter's infection. https://www.staph-infection-resources.com/prevention/airborne/
  10. Kiddo (DD15) has had her ups and downs in the last year. We are currently working on healing the gut and trying to be stable off all abx. She is using essential oils instead. Currently we are using a citrus blend, thyme, and oregano. We will be starting a paleo style diet soon. Kiddo is doing pretty well on the whole, but is very tired still naps 1-2 hours almost every day. Her varicella titres started going up again, and her EBV is still above 600 despite 1.5 yrs of acyclovir. We are stopping the acyclovir and are trying oregano and thyme EO instead. Kiddo was ju
  11. Traditional therapy of ssri or ssnri can help if you can tolerate them. I take cymbalta just to help reduce frequency. It does help and I can dismiss them easier when they do occur.
  12. We have used it for about 2.5 years. We use it for rubella titters that we're very high. It worked for that. They went from 169 down to 9.4. I never saw any benefits for add, but my kiddo is not hyperactive. Our immunologist swears it helps with verbal progression in autism, but kiddo is atypical and chooses not to speak because she says it hurts her head.
  13. My kiddo currently has a sinus infection and likely has chronic sinusitis. I just made some xylitol nasal spray (distilled water, xylitol, pickling salt, GSE, and baking sofa). I used on us both a few hours ago (separate bottles) and kiddo has been upset for about 45 min. She started oral abx just for the sinus infection and no herx from that. Has anyone seen a herx when trying xylitol nasal spray? Thanks!!!
  14. My daughter tested positive for strep, by culture, for over 60 days. The only thing that got rid of it was 45 days of Zithromax. If you do not do well on zith maybe try augmentin. It is amoxicillin boosted with clavulonic acid. There are also numerous medical articles you could print to show your rummy that strep is in fact resistant to penicillin. Here is just one that mentions penicillin 6 times: "The failure of penicillin to eradicate Streptococci from the throat occurs in up to 35% of patients with pharyngo-tonsillitis." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26400
  15. I am sorry, but I lost your phone number. If you want to talk/vent/cry to someone feel free to pm me your number.
  16. I find it a bit odd that the doc is giving two abx that are so closely related. Augmentin is amoxicillin and clauvulanic acid and keflex is a "first cousin" so to speak of amoxicillin. Not to say this cannot be done, but if you do not see enough improvements on this regimen, you may ask that one (probably keflex) be swapped with an abx in another category such as macrlide (Biaxin, Zithromax etc...).
  17. Thanks for the replies, support and encouragement. In doing more reasearch it appears ACA has already had large portions approved for repeal by the house and the senate (**BUT** vetoed by the president, so it was negated) in winter of 2015. The good news out of that is that when Congress passed the repeal they had in place a 2 year transition period. There is no telling what they will do this time around, but that does give me a bit more hope that we can hopefully get in a few rounds of IVIG before she becomes unisurable again. http://healthaffairs.org/blog/2015/12/04/senate-ap
  18. We are faced with IVIG now too. Not sure if your child/patient has PI, but here is what I found tonight: "Intended for US audiences only Questions? Call 1-855-250-5111. MyIgSource Let's face it. Health insurance can be daunting and confusing, especially when you have a chronic condition like primary immunodeficiency (PI). And even with insurance, paying for treatment can be tough at times. When you enroll in MyIgSource, you'll receive support to help you understand and manage your insurance, and you may be eligible to receive financial support, including a copay card for Baxalta Ig
  19. Thanks for response and the encouragement. For my child's sake, I have to to be more proactive than normal now. Republicans have tried to repeal Obama care in its entirety 6 times since its institution, and and additional 56 votes to repeal parts of it. They did not have an alternative then, they do not have an alternative now. Now that the republicans have the house, senate and presidency--nothing will stop them from repealing it. I expect it to be be repealed within the first 3 months, and either no transistion or at most a 6-12 months transistion. Unfortunately, there is nothing fo
  20. My Daughter has consistently had low IGG and IGA with normal to high IGm. Her latest results are: Igg 469 Normal 716-1711 Igg subclass 1 273 Normal 347-993 Igg subclass 2 91 Normal 140-440 Igg subclass 3 12 Normal 23-117 Igg subclass 4 5 Normal 1-83 IgA 49 Normal 51-220 IgM 247
  21. I bought the Brain on Fire book on audible (member price) for 2.95. Just in case anyone is interested.
  22. TEXAS *Dr. Sesgagiri Rao (Leading PANDAS Physician)Immunologist 972-964-7374 Plano, TX will treat more complicated cases involving PANDAS and Autism *Dr. Bruce Russell (Leading PANDAS Physician)Pediatrician 361-749-1930 Port Aransas, TX May not be accepting new patients. Will treat more complicated cases involving PANDAS and Autism Dr. Shreenath DoctorNeuropsychiatry and Clinical Pharmacology 713-524-3399 Houston, Texas http://pandasnetwork.org/researchandresources/find-help/usproviders/#TEXAS
  23. No, and my state just went to all HMOs, so it unlikely to be an option any longer. Her doc is not an insurance option, so I do not know if he orders this, would the insurance cover it. Probably not. We are waiting until we get her viral titers under more control before spending that kind of money on IVIG. If her titers are way out of control, as I understand it, it may help for a few weeks, but the viruses will just kick back in and negate all progress we make. Most her viral titers are dropping, but are still almost 10 times higher than they should be. EBV, varicella, HHV-6 are
  24. Sorry, but they did not help kiddo with vocal tics or selective mutism.
  25. Try these brands: Wockhardt Apotex Greenstone Pliva Teva Pfizer makes a 600mg And of course Sandoz http://www.drugs.com/imprints.php?drugname=azithromycin
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