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Everything posted by Jtsmama

  1. We saw Dr Lawrence at Shands on Thurs in Gainesville, Fl. Anyone seen him, any feedback? Really nice guy, but no answers. Said he will do research and see us Tuesday at our Rheum appts. Says the Myco P is 2 possible things. 1) Chronic Myco P, which he has never treated. or 2) an Immunological T cell defect. The old Myco P cells are being activated by any new infection, and thus show up on a blood test. Anyone else dealing with this? 14 yo dd possible PANDAS, current Myco P infection, high IGGs. 3 rounds of Zith, as soon as finished with abx, symptoms return. 11 yo ds, PANDAS, high Myco P iggs, was on Clindamycin..completely regressed with all PANDAS symptoms when switched to Zith. Zith gave him diarrhea, ruled out Gi Bugs, now on Biaxin.
  2. My 11yo son has been referred for Mito testing. We are to see a Dr Newman in Melbourne, Fl and a Dr Reddy in Orlando, Fl. Any others out there with both diagnoses? or have seen either of these doctors? What to expect as far as testing? Dr T recommended we seek Mito testing due to the severe case of PANDAS. We are also scheduled to see Dr R at USF for Inf Dis next week. Any thoughts? We saw Dr Lawnrence at Shands ID clinic on Thurs.
  3. My son has same issues. Has been on Zofran ODT 4mg for years, and probiotics.
  4. Western Blot came back normal. Both kids on Zpaks for a few weeks. My boy has been on Clindamycin for months.
  5. Yes...inmuno kids get sick more often than non immuno kids
  6. Pm me for info about Usf Immunos, been there for years
  7. Just spoke with Social worker from Nih, he doesn't qualify for the study, they can't help us. Was told, "if Dr Murphy can't help him, then I don't know what to tell you." He is too complex for Murphy...God help me!!
  8. My 11 yo son, PANDAS for years, currently Gtube x 1 yr, off & on Clindamycin since Oct, high Myco P, (sister has current Myco P), on Zpac for 2 wks with Clinda. Our Neuro is at a loss! Murphy doesnt know what to do with him, or ID, or Immuno here in St Pete. Neuro wants to send him to NIH because he is so complex. Anyone have experience with doctors there? Or any other doctors in Florida? Nemours Neuro? I am so frustrated, as is our Neuro! Please help!
  9. My DS 11 yo, started Clindamyacin in October and we saw huge gains! He was recovering...somewhat. Had a Gtube put in April '11. On Clinda, he started eating, sleeping, tics calmed down, moods were calm, he was happy,he felt great, cooperative, functioning again. Came off of Clinda for 3 weeks at the direction of the ID doc, and he immediately regressed. His Neuro put him back on the Clinda, we knew it worked, he didn't know what else to use. Complete turnaround again. 2 weeks ago Neuro switched him to Keflex. Immediate regressions! The tics are nonstop, ocd is crazy, very irritable, very depressed, doesn't feel good, not eating or sleeping again. I immediately called the Doc to inform, was told to give it a few more days. In those few days, he regressed further. Spoke with Doc today, rather the MA, was told he is not willing to prescribe abx, without evidence of current infection. My DS Myco P Ig has risen since Oct, DnaseB still elevated, and positive for EBV Ig. They only look at ASO and DNaseb. I am beyond frustrated!! My issue is they say they treat PANDAS, one of them being a well know PANDAS specialist. But yet my child is so complex, they don't know what else to do with him. Because he is not like "other" PANDAS patients. He has other rare disorders as well as PANDAS. Now is presenting with Raynauds secondary, something is causing this! So its ok to for the doctors to say, "We don't know what else to do with him?" And then they leave him out to hang, and just let him suffer! Antibiotics are established as the current treatment of choice for PANDAS, or am I wrong on this assumption? Was referred to a DAN doc from a specialist out of state, but the issue is I am a single parent, obviously no $$ tree, unable to work because my son is so sick. DAN docs do not accept Medicaid or insurance. Have any of you had any luck with a DAN doc treating your child, as opposed to your MD or specialist? I apologize for the rant, I am just so frustrated at this point, that people who have the knowledge, are unwilling to help him at this point.
  10. My 11 yo ds stopped eating and had a gtube placed this year. It has now been 11mos. He ha gained back most of his weight that was lost. We had an amazing turnaround with Clindamyacin, by Dr T. Was treated for high Myco P Igg. When he came off the abx, he stopped eating again. Our Neuro put him back on the Clinda, and he started eating again. We also use Marinol to increase his appetite. This stuff works great!! Pm me if u need any advice about the gtube...
  11. My son has a diagnosis of SAD too. We have done lore dose ivig for 3.5 yrs. Feel free to pm me with any questions.
  12. If deficient in pneumococcal titers is considered a Specific Antibody Deficiency, my son receives Ivig for this. The infant receives 4 doses of Prevnar, child and adult is the Pneumovax. Dr T thinks this vacc made my sons Pandas worse. But they use it to determine if a true pneumo deficiency when tested before and after.
  13. My son uses culturelle probiotic pearls because he can taste everything. These are great. We had amazing results with Omnicef for years to control his Pandsd, then it stopped working. Now on Clindamycin..
  14. My son was being treated by his Neuro for 2yrs, when I our Immuno suggested we see Dr M. She diagnosed him as Tourettes, ocd, and hf autism. After dealing with get for a year, we no longer see her. Our Neuro is still treating him for Pandas, and said Autism he is not, just part if the Pandas package. He did not present with those symptoms til age 7, it sure doesn't happen overnight!
  15. I as a Mom will go, if someone else can afford it! I actually was PreMed before my ds wa born so sickly. Would be cool if we could get someone to donate a scholarship! My best friends fiancee, in med school, is at Nih in Immuno, I turned him onto Pandas, he was shocked!
  16. Stephanie, do u have info about the conference? I was supp to nh d on your mailing list, but somehow still didn't make it...please pm me
  17. How do you get insurance approval for Pex?
  18. We had issues getting ahold of Dr T for several weeks after the initial phone call and emails. Call at 8 am! He answers the phone. The last 2 days I reached him that way. I felt like I was pestering, but he was very nice about it. He did immediately call in abx for my son. He will prob have a fit if he ever reads what we write about him, feel like im giving secrets away. Haha
  19. Per Dr T, started 10 days of Clindamyacin today! Hoping this is a start of something good. Son was asleep by 930, can't remember the last time that happened! My Neuro in Fl was onboard enough to rewrite the abx so ins wld pay. Discussed Pex and Ivig, gonna be major reaction issues, have to figure out how to deal with those before doing. Have any of you had the Pex and gotten insurance to pay, if so what and how do you bill it? Same with HdIvig?
  20. @BubbasMom - my ds 11 PANDAS has dermatographic skin as well! The doctors think it is the coolest thing, they always show the interns when we are there.
  21. Dr T seems to think PEX would be covered because he is so severe. I reminded him that JT was Immunodeficient and already receives IgSc, he said that should be covered as well. I am praying so! I am a broke single Mom, the least out of pocket for me, the better!
  22. If your child is on abx, he may not test positive on a rapid strep. My son doesn't, but he presents with headaches, bellyaches, his tics go crazy as do all the other fun parts of being PANDAS. I contacted Dr. Trifiletti in NJ, we are in FL. He has been awesome so far. Very happy with him. Have a phone consult scheduled today to review all the labs he ordered, and setting up a treatment plan.
  23. Was your son found to have any time of Immunodeficiency when the labs came back? If so IVIG is approved to treat Primary Immunodeficiency Disease.
  24. Got labs back: DnaseB, Streptozyme, Myco Pneumo, and IgE all High! Going to rule out carriers for Strep, do we need to do the same for Myco? Have sent and called Dr T msgs, no call back, Im so frustrated! I have an organization willing to help fundraise (huge) but I need a cost projection by this afternoon! Have any of u had luck with Medicaid covering PEX or HDIVIG?
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