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smartyjones

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smartyjones last won the day on June 26 2014

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  1. smartyjones

    tonsillecomy - oxy or tylenol

    I am always afraid to jinx myself - so I'll just say he is doing very well since the surgery. He is on a steroid though - doc has worked with many PANDAS patients and does 3 days to curb inflammation - in surgical area, but anywhere else also. Today is last day of steroid. He was not on abx pre -- started after surgery. Tonsils are being cultured, so we will see if that turns up anything.
  2. Hello Old Friends! DS 13 (time flies - I joined this forum when he was 4.5) just had tonsillectomy and adenoidectomy on Monday. He is doing well. YAY! He was/is not symptomatic for PANDAS but tonsils were huge and he has had some illnesses and sinus infections in past year and they remain almost touching. Doc said "plus 4" on scale of 0-4. Doc was very surprised he doesn't have breathing/sleeping trouble when he saw adenoids and these big tonsils. He is doing well with pain and I don't' want to give him more than I should but I don't want to give too little. He has oxycodone without Tylenol. I want to switch him to Tylenol but am stuck with which is the lesser of two evils. He does not have any MTHFR mutation. Any opinions? Thanks!!
  3. smartyjones

    Trying new treatment

    thanks. why do you think this works? we have seen good results with homeopathy - but i am always on the look out for plans B, C and D. ds14 has had a bartonella-like rash for over a month. he tests negative on blood tests. he is taking a homeopathic remedy and he does not have symptoms. I cannot image what else this rash is but bart. I am happy he does not show symptoms but fear he may in the future. sounds interesting but I also have concerns about ammonium -- do you have thoughts on that? thanks!
  4. smartyjones

    Trying new treatment

    hmmm.. . interesting. how long are you anticipating that $400 tube will last? And how long are you anticipating using this cream? Thanks.
  5. who can hit me with their good wording for flexibilty in attendance requirements and utilization of partial days? he has 6 days medical absences and it's only early october. a possible strep that turned out to be a bad case of hand, foot and mouth. the good news is he had a serious physical immune reaction -- wooh hoo -- hoping that cleared it and it doesn't go rouge to cause stealth trouble. thanks!
  6. last week, my son had a suspicious rash on underarm. rapid was negative, ped put him on antibiotics while awaiting culture. after 4 days on keflex, he has a headache, fever and sore throat. What do you think about developing symptoms after 4 days on abx?? he has not been on abx for almost 2 years. this can't be c-diff can it?? Thanks for opinions!
  7. I wanted to paste a picture of what I think may be pastia's lines in my ds's underarm but can't seem to paste. I believe I am taking him in anyway tomorrow am for a strep test but wanted to get opinions. Does anyone know how to paste a picture to a post? Thanks!
  8. smartyjones

    Tired of playing doctor

    yes, it is so frustrating to have to make the decisions but feel not the best qualified to do it. i feel ya! how are you taking her off the abx when you do? are you weaning or just stopping? for initial exacerbation, my son was on abx that we likely took him off cold turkey. we then used homeopathic options. whenever we tried to stop that one (even wean) he reacted - so we left him on it for a long time (but it was not abx, so i wasn't as worried). when we finally took him off, we did it very slowly and watched carefully. he has not been on abx for a long time and uses them only in acute situations. last year, he had a lyme rash. i forgot b/c he hadn't been on abx for a long time. we just ended the doxy when time was to come off. the next day was a disaster at school - and i mean disaster! a few months later, he had strep. this time - i remembered and weaned him off and he did much better. can you have your docs support in weaning off the abx and adding back if needed or prescribing so you can do the weaning?
  9. oh qannie -- awesome!! please keep posting results and experiences!
  10. smartyjones

    headache every 10-11 days

    we just extended him - he had been going for ART every 2 months. he's been doing so well, we just extended to 4 months. this past week is 2 month mark. this headache is the only symptom showing. thanks for your thoughts!
  11. smartyjones

    headache every 10-11 days

    ahhh -- sf mom -- I was hoping you were still around! I know you are the keeper of the TBI info! thank you - I can never keep the cycles straight. it's on the upper left forehead. comes on out of nowhere. can only get rid of it with motrin.
  12. any thoughts on a recurring headache every 10-11 days? that is the only symptom. it may be the 4th cycle now. this child had sudden onset 7.5 years ago. has been treated for everything -- long term treatment for strep, lyme etc, viruses, fungus, etc, etc. he relapsed last year with active Lyme (beautiful hiking pictures ~2 weeks prior to rash), then strep, then myco. he's been what I consider in remission for give or take 10 months. thanks!
  13. Does anyone have any info or experience with the new JHU Lyme Clinic? It looks pretty research-based but does mention medications, so looks like they are trying new treatments to research. I'd appreciate any info anyone has. thanks!
  14. Pow Pow -- are you still on this forum? I have met someone whose child is still struggling despite quite a few serious treatments. it reminded me of your daughter. I cannot remember a lot, but think she did better after she got a different diagnosis. would love to connect with you. thanks!
  15. oh - so sad -- or not -- that I can't remember the key words I need to find an old friend on here. not that I don't love you all who are forever part of my heart -- but I am glad some things have slipped my brain! I think it must be like the pain of labor slips from your mind -- the trauma of PANDAS and all the research and info you think you can't get away from somehow recedes from you mind. who and where is my old friend with many children and a beautiful daughter who struggled so very much until being more properly diagnosed with I think - some more specific form of autoimmune encephalitis? I have someone whose child has struggled amid many treatments and I am trying to remember some of this info. Thanks!
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