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Everything posted by smartyjones

  1. 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. 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. 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. 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. 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. 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!
  16. hi jennapow. yes -- so much to think through. my ds is a lot like ocdmom's son -- he(and she) are beacons of hope for us - have been for years. we have the other side of the coin. the adults at my son's school became horrible -- they did not see the challenges as quirks and social skill deficits - but rather, defects to be disciplined out of him. in the end, we needed to get him the he** out of there. he is at a different placement that is in actuality, too restrictive for his needs, but the best choice for now. given his disastrous school history, he needed something to help get him back on track. it has actually been quite good. the adults are fabulous, the class is small and he likes the kids. one thing that concerns me in your comments about the new placement -- his high academic needs are REAL needs. they need to be addressed and serviced. if not, he very well could have struggles. you have every right to discuss and get real answers about how they plan to program for his individual academic needs. also, you do not have to go with the private psych's recommendation -- it is simply her recommendation. perhaps based on that observation, change in placement is a good option. it may or may not be based on the entire picture. I believe part of our trouble was the school saw the concerns that ocdmom details and would not approve homebound when trouble was surfacing. we could have avoided so much if we had done that then -- they dragged on and let everyone get very frustrated. sometimes, it can be what the child needs - a break and can come back when healthier and function much better. the fears can be real - but there are things you can do to help work with not getting too comfortable in the home setting -- not mean, just that going back is always the plan. as unfortunate as it is, sometimes it is not a choice of best option, but least worst. we've had to go with least worst 3x in his 5 years in school. but - each one has had a silver lining. I think it will be there for you too -- sometimes it just takes a while to uncover it. Good luck!
  17. Hello old friends! anyone have any recent news and/or thoughts about old pal Harvey Singer? I have a friend whose son has been referred to him. She was mentioning he was referred to a neurologist from Hopkins, she almost fell over when I guessed who it was. Thanks!
  18. Additionally, you mention , "he is not sick." my classic son does not show medical signs of strep. when he was first diagnosed, it was because a behavioral therapist suggested it. I brought him in for tested based on behavior only. his titers were 898 and he had active strep. just last winter, I brought him in to be tested on behavior -- an OCD incident at school, various OCD comments about fast food, an extreme anxiety reaction at school -- the doc was not our normal treating doc, the nurse took the rapid swap, I had given a paper listing the reasons why I wanted the swap -- not one of them medical. the doc walked into the room with huge eyes and said, "that rapid is positive!" with utter amazement. the 2nd son shows both medical and behavior signs. I also took him in last year for slight medical sinus, not what I would take to dr for, but more severe behavior. they diagnosed a sinus infection.
  19. i don't think you are out of your mind -- I think you are aware of something -- something most people, even family members, are not aware of. many years ago, I was at a group of about 4-6 pandas moms. we were discussing our pandas child. we met again about 3 months later - we were all discussing how another child was now showing symptoms -- each of us! it was really bizarre. I remember my 2nd son, who is the older, having trouble at night -- something like night terrors as he was going to sleep. (it's funny how you actually do forget some things!) I said to dh , "are we just going to wait until he falls apart to take him in?" well, apparently we were, because some weeks later there was no doubt we needed to have him evaluated for pandas. the thing is - I even think now, if it had been him first, he could have flown under the radar as troublesome and many people could have had many explanations about his behavior. my 1st son is classic, no doubt pandas; the second is diagnosed - but not the slam dunk case of the first. 2nd has clear infection related anxiety and OCD behaviors. but he also has subtle anxiety and OCD behaviors, with a huge step up with infection. it is something that impedes his success, but not so much that it impedes his life, like the classic son. so, if I did not know what I know because of the 1st son, would the 2nd son be diagnosed? maybe, maybe not. whereas the 1st would certainly have.
  20. Thanks so much! He must have felt good vibes! He did well. he's uncomfortable today not too bad, but he's doing okay. They didn't do the full surgery - it was getting long and he was getting uncomfortable. This was part of the decisions we were trying to make -- knock him out and do it all with full sedation or see what we could do. the surgery itself didn't need full sedation, the question was whether he would. he took Valium and refused nitrous oxide (from what i could tell, t this seems to mainly be a MTHFR issue, which he doesn't have, so i was going to allow it) So - we are still not done. Aghh - we are going to still have to deal with the tooth in the jaw. but i guess if we have to put him under,i'll feel we have done what we could have to avoid it. mpatti -- yes, wierd! i think it's somehow got to be related. i often wonder how this one child of mine has pandas, 2E and supernumerary teeth -- all supposedly very rare conditions. i love the natalie merchant song Wonder. "I confound you and astound you " she wrote it when she did work with special needs kids.
  21. Please send some positive vibes my ds's way. he's actually doing quite well -- and is in the oral surgeon's chair right now having supernumerary teeth removed. all things considered - he's done fairly well. the spot is in the front of the mouth, so we're grabbing all the positives we can! dh took him because I am tapped out and unable to deal. thank you, dh! since last September, this child has had a relapse of PANDAS symptoms with Lyme with positive EM rash ; strep in December; myco in January; and a horrible school situation. we were able to finally get him back to baseline sometime March/April-ish. and still -- he has these extra pebble teeth and an adult tooth almost laying down in his jaw that must come out. it makes me chuckle a little when I try to think of things to be grateful for, that those who are too ignorant to understand think that he has poor or no coping skills - what they don't realize is that he actually has some stellar coping skills - he just needs to be led to use them because he has such more severe challenges than what is 'normal' for his age. so please send any positive thoughts our way!! Thanks!!!
  22. much already said more eloquently than I can put it... I was up on this last year as it was an issue for us - I have my research in files, not my brain, but...unless the vacc has changed, it does not include vacc for the strain that caused the two college breakouts where I think one person died in each a few years ago. so, the 4 strains it does cover could potentially be troublesome (as anything could), but it is NOT even what was concerning in the US in the past few years.
  23. deedee and monarch cat -- you have a update about how things are going? can you give opinions on lithium orotate at this time? ds has had exacerbation with lyme, strep and myco over this fall/winter. he is doing fairly well, but I am looking for help with intense reactions it is occasional and to an appropriate trigger -- what I mean is, he is not wrong - he should be upset about whatever it is, it's just a quick and intense upset. that's what I am hoping to mellow with lithium orotate. thanks.
  24. thanks worried. . . sorry -- it seems you are saying both lithium orotate and st. johns wort have been helpful, is that correct? you seem to say L.O "mood stability" and sjw "improving mood" -- do you see differences in the actions? do you think it's the combo? just curious - can you PM which doc you see and if that doc suggested these or just signed off on you suggesting. we do have a doc who guides us. thanks.
  25. I say very much yes. an allergic reaction is engagement of the immune system -- anything that engages the immune system can cause a PANS reaction. my son is allergic to sunscreen ingredients - I am usually very vigilant about it. a couple of years ago, I used one that I thought was okay. the first day, he had a slight reddening of his face - I thought it was just sun exposure -- I used it the next day! yikes. that evening, I realized, it wasn't sun exposure, but an allergic rash. that triggered a flare ! the rash was slight and lasted only a few days -- the flare lasted 6 weeks. good luck!
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