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T_Anna

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T_Anna last won the day on April 7 2015

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  1. Anyone have experience with this treatment? I'm looking into this for DS18 and I'm wondering if anyone has tried it since then.
  2. Thanks. We had the second shot yesterday. The shots are very painful, but DS16 is a trooper and if it works then it'll. be worth it. Thanks again!! T.Anna
  3. No lidocaine. The whole process was a bit if a mess. The pharmacy didn't give us a syringe/needle or sterile water. But it all came together at the last minute. Would lidocaine make it less painful? Do you think the pharmacy would sell that to me or would it need to be part of a new script? T.ann
  4. Thank you to everyone for their advice and input. We had the first of two injections yesterday and while it was painful, it was survivable and the horrible pain passed about 15 minutes later. A few hours later he said he no longer felt it. Thanks again, T.Anna
  5. Thanks everyone! Going to pick up the meds today and the nurse is coming Monday. Thanks 911m. I told DS16, and I think he's prepared. Thanks as always everyone!! T.Anna
  6. Also curious as Dr.Harley was there I believe and I'm curious about his T&A study. Anyone? T.Anna
  7. Has anyone ever done an IM of Ceftriaxone (intramuscular shot)? Did it help? DS16 had his tonsils removed two weeks ago and had "Enterobacter aerogenes" that showed it is responsive to IV or IM Ceftriaxone. The infusion company will only do IV to a port, so we are going with IM, but I heard it is really painful and wanted to see if I could find any feedback from fellow sufferers. I remeber Dr. Ohara talking about painful but very effective shot of abx. Anyone have ANY feedback?? Thanks as always, T.Anna DS16 - been through the "ringer"
  8. This is a video from Dr.Latimer at the Italian conference. Ds16 had It done in 8/2013. It did help with some issues, but we think he may have gotten re-infected when he got home. The hospital stay is annoying, but the procedure itself is easy.
  9. We went to see Dr.L last week and she recommended looking into a possible T&A for my DS16. Her thinking was that he didn't do well enough after PEX in 8/2013 because maybe he still had infections or his siblings still had strep (DS14 is PANDAS-light, but had titers of over 1200). She has just completed a study and they found staph in the tonsils of PANDAS patients, they also found T&A helped resolve sx even in kids who did not respond to IVIG and/or abx. I cannot find the study and verify that data, when I do I will link. We are going to see an ENT (and ID) on 3/10 or 3/11 and we hope to have some answer then about proceeding with 1 or all of us having T&As.
  10. Please check the post "New Parents: Advice from the Trenches" you can reach out via PM to those moms and I'm sure they will respond. From what I've read, things can get worse before they get better. http://latitudes.org/forums/index.php?showtopic=23531&page=2#entry179328 We are also looking at Rituxan as an options T.Anna
  11. Just tried to PM you about Retux, I sent an email, not sure if it's the right address though. T.Anna
  12. Thanks LaurensMom. So are you back home? Ds16 will be happy that it's not a mandatory stay. T.Anna
  13. LaurensMom, we are headed to see Dr.Latimer and see if Rituxan is an option for DS16 this Wednesday. Can you tell me how the Rituxan process worked? How many days? Inpatient/outpatients? How was it tolerated? We're also in NYC. T.Anna
  14. Thanks so much for posting SurfMom, glad to hear about your success! T.Anna
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