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Everything posted by T_Mom

  1. Just saw your post re: mute most of the time. If you look back at the history of a number of us -- my d included, this is similar to many. We finally saw a neuro who suggested a steroid burst -- we also consulted w Dr K by phne and with the local neuro we did the burst and antibiotics full strength. She had an amazing recovery -- I strongly encourage you to consult with one of the PANS treating doctors--at least by phone, better in person for an eval. asap
  3. We see Dr L and the costs for IVIG are dependent on whether or not your insurance company will cover it. Lots of info on this on the forum, search for IVIG and insurance. Even today there is a thread on it-- http://www.latitudes.org/forums/index.php?showtopic=19365&pid=152280&st=0entry152280 Best to you--
  4. Definitely bring it up -- You cannot afford not to! Our school was kind enough to put out requests for families to report if their child had strep -- regularly in the school announcements. We were not told "who" but I knew that strep was pos. in someone and that was a big help. I don't know why you believe the child might be a carrier, but honestly, if it was me and I felt that strongly about the possibility, I would definitely, privately, speak with the mom and ask if she wouldn't mind having her child tested. Start there -- and again, if it was me, I'd take some easy-read user friendly articles to help explain why you are so concerned about strep/PANDAS. Good luck!
  5. If she was "completely asymptomatic" after an intial 10 day course of Amox. that is very encouraging -- if it was me, I'd be doing just what you are, asking re: the dose and type of antibiotic, and trying it. I think it helps to work up a plan for the next 6 months though, in case IF what you are doing does not help, so you have an action-plan of what will be done next. W/ the doctor, perhaps sketch-out a timeline as to when to move to one of the stronger treatments, so it does not linger and steal time from her life. just my opinion.
  6. okay, this is concerning that the speakers are not PANDAS/PANS experts, rather naysayers or docs with little clinical experience with PANDAS. Why can IOCDF get Cunnigham, Swedo, Latimer, Jenike, and Murphy to speak at one conference, and all these guys can get as speakers are some docs I've never heard of. Wouldn't it be more reasonable to get 'experts' in OCD/PANDAS rather than Dure/Hill??? The call for presentations is still out -- I believe -- Can they still get in to present -- Oh, PLEASE !!! We really need some "stabilization" of this conversation at the AAP convention!
  7. Cindy, I am so sorry -- I read your post and completely understand the feelings you are going through -- We had the same, OCD (severe) that morphed into severe ODD, hating, yelling, etc. very bad -- the year before last during a PANS episode. We let it linger in our d for about 5 months as we fought insurance for pex, finally did IVIG out of pocket as (pex was never approved) and with the IVIG she started to literally change back to herself within 48 hours -- and continued (with ups and down) for a long slow, but in the right direction (!) obvious recovery. I can tell you that within three weeks it was so much better after IVIG that we were amazed. It is a long haul for recovery, but essential that you get the help you need as soon as possible, as things can get worse. How long are you willing to wait if you don't see improvements with the Augmentin? Is IVIG an option you might consider after a month? I wonder about the zoloft issue, as that can be a trigger for some kids if the dose becomes too much -- We lost essentially a whole year of my daughter's life to one exacerbation -- we never would have waited if we had known IVIG would have affected her so positively. I hope you find an effective treatment, and soon -- hang in there.
  8. Hi Croatian Mum-- if you are using Augmentin at 1000 mg, x 2 a day I suggest you definitely ask to switch to Augmentin XR as the clauvunate acid (sp?) will otherwise be above the recommended dose! Google the CA issue online. You will notice if you search on this topic on this forum parents have found (some say!) that XR -- extended release to be more beneficial! -- again, it may be the amount of the "activator" clavunate acid--just a suggestion. How much does he weigh? It is remarkable that you are seeing a difference in that he is "able to say some words normally" !!! THAT is wonderful news -- and definitely you are doing something right here! Keep it up, healing takes TIME and can seem painfully slow...but the trend, the trend should be encouraging to you!
  9. I notice you say that he has been on abx since the IVIG, and that now with the exacerbation that just started two weeks ago you have him on the Saving Sammy dose of Augmentin, correct? Just some quick thoughts, (which may not be worthwhile.) If this is a change in abx type perhaps the previous abx was more effective? Are you using Augmentin XR 1000 mg, which stands for eXtended Release, and is a time-released dosage, which many of us found more effective then the smaller, lesser pills of Augmentin (still 1000 mg two times a day either way, but some have said the XR was more effective...) and it has a safer dose of clavunate acid (sp?) which is the activator in this pill. If Prednisone helped before it is likely you will see an improvement -- in our experience, it may not be as much as the first time you used it, but each child is different. You asked if it was true if prednisone was the "best" test for PANDAS. I would say that responding to an immune modulating anti-inflammatory is the best test, and you have had that it appears. IVIG is such a treatment and if you saw an improvement in his severe symptoms with IVIG, well, can you do it again??? I have not heard the idea that if prednisone does not help then it may not be PANDAS -- I think there have definitely been cases where many of us have had positive bloodwork, and still prednisone may not help, or may appear to make things worse for awhile. I hope you are able to find the right help for him now --
  10. hi Blake'smom-- can you tell us more on the difference post T+A for your son. Was there an obvious strep connection and if he had OCD/ticcing issues "resolve" with the T+A? other symptoms? thanks--
  11. We have had the same with exacerbations -- severe ODD, only it is (thankfully ???) directed at parents, not friends. Regardless, we did counseling (extensive) when the ODD was at its worst. For us, it seemed to be more of a support to me than to anyone else. ie,. no matter what behavioral plan was put into place, she was still ODD. (and OCD, ticcing, etc.) It was not until IVIG that she started to heal. Based on our experience, I would suggest you try to "set a time limit" of how long your family is willing to let this continue, before you "try the next" rung of the treatment ladder. Have you tried IVIG? Steroid burst give any relief? We lost a year of her life essentially -- and that was such a waste in my mind, when the IVIG made a huge difference.
  12. Thanks for this Ozimum! Interesting! I am struck that each of these AAP presentations touches on the specific issue of "STREP" --- While I appreciate that, as we know of course that strep has been shown to be linked with CHOREA AND OCD with the Sydenham illness for example, so we already have established that there is a ticcing/OCD connection, to strep and all, but WHAT ABOUT PANS !!! The issue, in my mind, should be centered on the fact that ANTIBIOTICS and STEROID BURSTS and IVIG and PHERESIS are clearing the VAST majority of the kids treated for PANS of TICCING AND OCD, !!! not to mention the many, many other symptoms we all know (and hate) all too well of PANS -- (wetting themselves, ODD, writing/academic failure, etc.) Why are these idiots so bent on proving/disproving the strep connection, instead they should be observing the FACT that kids are getting well again with these immune modulating therapies!? ! That LIVES are being saved -- literally -- by the PANS treating doctors, who are putting themselves "out there" and only using researched (our tax dollars at work!), evidence-based treatments. THAT is what everyone of them should be reporting on -- THAT is the story here and anything else only puts off the healing these children deserve.
  13. I agree whole-heartedly -- this "presentation" of PANS is alarming. The International OCD conferences (two or three years ago? and then the more recent one--) have included some really excellent presentations by treating doctors -- and parents. We really need some presentations at the AAP -- in the hope that some will be helped, rather than institutionalized!
  14. I will add, on my husband's side of the family there is a familial dystonia, looks similar to MS physically. 50% chance that it is passed down, he (thankfully) shows no sign of it. On my side of the family my mother had rheumatoid arthritis.
  15. Great thread -- and nice to see some ol' familiar faces weigh in on this! This was by far one of the hardest aspects of the last four years (during PANS episodes!) As an aside, I sat tonight with a "new" counselor for my youngest who is at the tail-end of a 6 month anorexic PANS flair. (Thankfully appears to be resolving, 12 weeks post IVIG and much counseling.) As my d spoke so eloquently, and so defiantly(!), I could only watch and smile (yes, smile) as I wondered HOW in the world could someone, on the outside of "all of this", someone who was just hearing a 90 minute snapshot, HOW could anyone fully understand what we were going through, have gone through, and how could this person ever understand how I could smile as my d spoke. My husband and I know she was around visiting family members over Christmas, who were sick! We know she then started flaring -- with ODD attitude and rigidity of just about everything ...and so I smile.
  16. It is my understanding, that the OHI (other health impaired) label is dependent on the MEDICAL DIAGNOSIS which has been given. I would ask if the pediatrician, ie., Dr T (?!) can write the documentation for the need for the IEP -- since it is a HEALTH issue (like MS, or cancer.) The testing by the school will be in an effort to "prove" that the "disability" -- in your case the HEALTH impairment IS affecting his academic achievement. This may be VERY difficult to assess, as if they give an IQ test, and/or academic achievement tests (reading, writing, math achievement tests) -- and he is in a PANDAS episode, his academic ability will not be assessable. It is basically shot due to the PANDAS inflammation, and will not be an adequate predictor of what he is normally capable of doing. Do you have a record of his previous capabilities which you can use as documentation of his "true" academic ability? Standardized test scores, school-wide tests, and such from years previous should be able to be used to substantiate his "true" ability.
  17. Parents were both 37 with first child, and 39 with the second. Both kids diagnosed with PANS.
  18. I wonder if AAP ever has patient/doctor/parents panels? Imagine a few "before" and "after" PANS treatment videos being shown there! I think a presentation at AAP -- by the Researchers and Doctors -- would be very powerful.
  19. Hi -- Good advice from Nancy above-- I would only add that qualifying as "Other health impaired" can be done with a wide variety of issues, and the medical issues he is facing certainly should be enough. An IEP will provide MUCH more than 504 plan, and would enable you to request services more directly for him. However, as I write that, I remember our own experience and I know that even with an IEP, our kids would not have been able to function when affected by PANDAS severely. Have you had success with treating him via a PANDAS doctor? (I believe you were going to see Dr T, correct?) Have you tried a month long antibiotic (full-on strength) and did it "clear him" of any symptoms? Seems to me that since you have been dealing with this for so long, and since there may be an issue of mycop. -- an antibiotic for a month treatment is worth considering. Your concerns are understandable, as far as wanting him to succeed academically, and I do think an IEP may be helpful. However, if it is PANS, and the underlying medical issues are correctly treated, improvements should include overall functioning with time (again, with PANS treatment.) (Have you thought of seeing Dr L for a consult too? Her area is neurology.) Hope things improve--
  20. That is VERY interesting...I wonder WHO is sponsoring/presenting this topic??? What this conference needs is a small panel of PANS doctors -- who are actively treating and seeing results sharing their findings!!! Somebody needs to be sure the NIH team (+Yale) know about this and may be able to hold the flag on behalf of the truth! (OK, I am climbing down off my soap box now!
  21. Sounds like OCD -- how and when did it start? After an illness? After strep? Some have found that vit D (in large quantities) may be a contributing factor for some children (???) You can search on the forum and find these past conversations-- I only mention that as I see your daughter is currently on 3000 mg of vit D,and that is a lot -- unless she has a deficiency? My best to you -- I hope you find the root cause and a positive treatment.
  22. Hi Jenna, thinking about you and wondering how it is going with the steroids?
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