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Everything posted by smartyjones

  1. dcmom -- I tried to send you a PM -- are you on for that?
  2. it's what I call the curse of 95%. he does well 95% of the time, so when he doesn't, they believe it's a behavioral choice. he's not scared to go to class -- he just doesn't want to. so they don't really care if he has PANDAS or lyme -- they see it as a choice b/c he makes the right choice most of the time. there are no accommodations for anxiety b/c they don't believe it is anxiety -- it's a choice. it didn't really matter, because he was doing well. now he's not and it's a disaster.
  3. thanks momslove. I am asking to see diagnosis letters. my school seems to be getting tripped up b/c ds's diagnosis is PANDAS -- "s = strep" and they seem to not understand how his recent CDC positive LYME rash diagnosis would have anything to do with his immune disorder. so I believe now, I need to have another letter with PANS. I learned the hard way not to get too involved with explaining the disorder to school personnel -- now, unbelievably, even that is causing us trouble.
  4. does anyone have examples of current 504 or IEP letter they have used that have been helpful? thanks.
  5. best quote I've heard in years! "just because you question something doesn't mean you are opposed to it, it just means you want more information."
  6. zinc and copper are related. if you are increasing zinc, you may be changing the balance(or moving the imbalance) that has been in place with copper. basically, chelating the copper and you may be seeing effects of excess copper circulating. I can't remember a lot to state it now, but if you need, I can look back at notes, etc. right now -- I'd say google 'copper personality' or copper overload and see if these are issues you are experiencing. if so, this may still be something you will need to deal with -excess copper is troubling - but you will likely need to add zinc at a much lower dose.
  7. so roving mom -- what does that mean? do a herbal protocol without abx at all ? do herbal with abx?
  8. well dear friends - I can never seem to extricate myself from this forum -since I see this is something of my 1500+ posts and as I break down in tears that I have been a member since 2009 - ds10 is having some troubles. -- but alas, it's not as bad as it could be. he has been doing very well heathwise for 2.5 years. the last semester in school there were many struggles -- I believe mainly due to 2E issues that seem 'hidden' but are not so difficult to understand -- if you just look slightly beyond the 'he just doesn't want to'. he had a big problem last year that was likely due to a slight flair with a virus. the first week of school was fine - the second, he refused to go to class. there is actually a clear line of reasoning - he was afraid something troubling would come up, he would act somehow out of line and he'd get in trouble. this was his experience last year. I have been trying to tell them the train is off the tracks since March. what was different was his unbending degree of concern. he refused to go a couple days, which of course, just feeds on itself. we went to our integrative MD who thought he was having autoimmune involvement, likely due to a virus (he thought vector-borne). he started some remedies and we started ibuprofen. ds got a little deeper into cognitive inflexibility (likely a worse before better reaction) and then began to pull out of it. school was trying to help but really only offering a 'you must do X' plan - full-on Ross Greene Plan A -- a proven poor way to deal with ds. he's 10 so I don't often see him dress or shower anymore. Last Friday, I was in his room and saw him change his shirt. I couldn't believe it -- a 5 cm EM rash on his back just under his arm! our docs were booked so we went to urgent care. doc there confirmed and put him on doxy for 2 weeks. ped thinks should be 3 weeks. our integrative MD has his ideas also. I'm interested to hear what any of you weigh in with. I guess if you're gonna have lyme - you might as well have a rash! he's back to his normal self as far as our general life in concerned -- except school is still a problem, mainly with backlash from the initial problems and then more backlash from lack of good crisis plan when everything hit. I'm not sure this is a good place for him any longer. I'd love to hear thoughts on meds, testing - plans for the future. the doxy is every 12 hours; he's on a hefty probiotic at the 6 hour inbetween -- any other advice on counteracting side effects of the abx? thanks!
  9. NiMH, when testing Pandas kids, found that visual memory, actually, any form of "working" memory is affected with Pandas kids... qannie -- how are you saying this? are you referring to your personal experience having your child tested at NIMH? is there something published that states this? thanks!
  10. sss- interesting - I think I have noted other similarities over posts of your dd and my ds. wonder if it's just coincidence or some reason for common threads. yes - versed is what they would use. is that what you did with your dd? ds is neg for MTHFR. we have not done 23 and me for further mutation info.
  11. ds 10 has not just one 'rare' condition of PANDAS but also has a supernumerary tooth - seems somewhere around a 5% or lower prevalence -- here's to my one in a million kid! (also he has 2E learning status) this in and of itself is not troublesome -- may people do just fine with them in place. however, for him, it is impeding the permanent tooth eruption and has actually caused that tooth to move almost horizontally into other tooth roots. he may actually lose that permanent tooth. so - this needs to come out -- the primary tooth that is in place, the supernumerary pebble and strong possibility the permanent tooth. this is a procedure that could be done in an office under sedation and nitrous oxide. for most people, it would be an office procedure. our ortho suggests doing it in his office under valium and nitrous. ds is very comfortable at this office and with this doc. our ped thinks ds is too sensitive and best situation is knocked out. the oral surgeon would do it in his office but was certainly agreeable if I thought it should be in the hospital. our integrative MD has a background in anesthesia and thought that would be a good option to just knock him out. I have concerns about anesthesia and effects that could have. the hospital route is certainly more expensive. I have read some troubles about nitrous and ASD kids(ds is not technically on the spectrum - I just mean similarities of sensitive kids). I have concerns if they get started and he is too sensitive and it would have been better to be knocked out. what if he would have done okay in office and I subject him to unnecessary anesthesia? any opinions to share? thanks.
  12. apologies to all who use this or like it - just trying to add a little humor, albeit dark. please heed this warning and go no further if you like this product. I cannot believe this company did not do a proper extensive marketing search before naming this product. granted - not so much in the mainstream and an old reference, but I used to work in marketing and don't believe they used this name. dh claims they must have done it on purpose - but I just can't see it as a wise business move. google if you are curious.
  13. just my opinions. . . I do consider stretch marks a symptom. for myself, after being on a remedy for bartonella for ~3-4 months, I got a mark on my upper leg and wondered why I had a mark like a cat scratched me. sometimes i have to wonder how I make it through life. for ds12, 1-2 years after ds10 was diagnosed pandas and subsequently many other infections, he started having symptoms. . . fears, separation anxiety, intense exercise-induced asthma. . .for some reason, I hemmed and hawed as to if this was infection related -- likely due to cost of treatment. I wanted to take him to ds's doc but was procrastinating as to if I 'really' needed to. I remember saying to dh, are we just waiting for him to fall apart before we take him? a week or so later, he had intense 'bad thoughts' while going to sleep. yep - I guess we were. tough call on what to do about treatment. I would advise you to watch him closely, keep a journal of things that cause you to wonder. what did your NP suggest for treatment? and adding things that strength the immune system may be something to consider.
  14. rowing -- wait a minute!! HPV was required with your school shots???!!! are you kidding me??? I have always been suspect of that vacc -- and that was before I'd ever even heard of pandas. when it came out, the manufacturer was the one lobbying congress to require it. right there, indicates a big problem.
  15. hope -- what does he do with the item when he gets it? it may be not so much that he 'wants' the item but that he 'has' to have it. this is what I mean about the insidiousness of OCD. my ds had his worst time during a reaction to a remedy. this involved non-eating issues. luckily because it was a herx-like reaction, it only lasted about a week. each day, he drank just enough liquid to keep him out of the ER. he would smack food out of our hands to not allow us to eat it. it was food that he was rejecting. because of things he said as he was coming out of it, I believe it was a false belief that he or we would die if we ate that food. further, it was some complicated thing that if the person did die, they would have deserved it. I think he was about 6 at the time. imagine carrying that thought at 6 years old! a long time ago, I heard Dr. L say that the false belief that some kids carry due to PANDAS is so horrible, they will often never divulge or admit it. I believe this is what can cause the sometimes shows up/sometimes not situation rather than a choice on the kid's part. but yes, sometimes it's hard to tell. but - if you are fine with something, it's easy to be compliant. if you are concerned your dad will die by eating the waffle you said no to, no - you may act irrationally like a wild animal. in addition to Explosive Child, Social thinking, we have used 6-step problem solving. however, the child (or person problem solving) needs to be in a pretty good space to participate. so happy to hear you got the book. I'd first work on the repeating technique to get yourself into a situation that you are not so emotionally dragged into the situation so you have more ability to effectively work on solution.
  16. my kids are fully vaccinated, except ds10 didn't get 2nd chickenpox. I think ds10 had some reaction to first chickenpox b/c when I got his medical records, there was a note that I had called, but my dh nor I remembered that, so it couldn't have been too bad. it was only after PANDAS onset that we thought about it. ds12 did not have reactions to vaccinations. he is my 'milder' PANS child. this year, my state is requiring Tdap and meningococcal vaccs for school. I had always thought I would test blood titers for future vaccines. however, blood test results do not substitute for either of these. one of the things that bugs me about this is. . . ALL of the cases at Princeton and UCSB last year were strain B - the deadliest. The vacc protects against strains A,C, Y, and W-135 but not B. there is no US approved vacc against B. I can get a religious exemption so I know I don't have to do them, but my question is what are opinions of those with older kids on these two vaccs. any opinions? thanks.
  17. YES -- a pandas child can be that obstinate!!!!!!! I would heavily second SSS's suggestion of the book Explosive Child -- I am a huge fan of Dr. Ross Greene! I would not expect the tips in the book to change your son's behavior immediately or even quickly -- but it will give you tips on how to interact with him to ease the problem without getting drawn into the drama. if you apply the concepts consistently, over time - it will have an effect on your child. but the initial successes will come from your interaction with him and will ease your involvement and angst over the incidents. you can check out livesinthebalance.com. I would encourage you to learn about OCD and it's 'hidden' insidiousness. my son likely had the form of 'just right' OCD. not lining things up and making them equal - but that things were either 'right' or not. this was often hard to determine as it was 'right' in his brain only. there was a time I found it helpful to ask him if there was a reason, no reason or a reason he couldn't say. this seemed to somehow help us. also, the reason was often that it wasn't what he had planned or was expecting. I really don't think this was manipulative, it was troublesome to his brain. I term that my ds's exacerbation symptoms are 'Asperger like'. this was very helpful in working with him. another thing I have found helpful is "Social thinking". you can google it. it was extremely helpful in putting things in terms that made sense to him and showed results. hopefully, dcmom may post. she had a really good technique of sitting out until compliant -- kind of like time out, but different -- better to work with an older kid than traditional time out. if she doesn't post, maybe you can PM her. Good Luck!
  18. I cannot speak to the meds you mention - just to tell you our experience. recently, ds's lunches came home hardly touched, if at all. he was also doing a lot of complaining about breakfast choices. he does tend to eat the same thing for quite some time - so it is reasonable that he gets tired of it. but this was more intense and with NO interest in anything else. there were also some other step-ups. our doc believes TBI is bothering him again. he has been on remedy only a short time. yesterday, he wanted to try cracking crabs at a restaurant. has never before been interested in crab and wouldn't try it. I do think for him, this appetite issue is something that indicates a problematic infection or step up in something.
  19. LLM and sfmom -- did you request spectracell and your doc complied or is it something your doc often does? it appears the test is $369 or $491 with interpretation if you just want it done on your own. the website says they will call your doc if it is something you want to do and they will explain - but I don't know if that would be at a good rate or the other.
  20. thanks for info on tests. what are all your docs using for diagnosis codes for insurance? sfmom -- the TOTAL cost was $190 or that was after insurance? I had horrible time with insurance that denied MTHFR and don't want to repeat that fiasco.
  21. thanks. I ran across that spectracell test a while ago in a compounding pharmacy when we were doing that. you need a doc prescription for it, don't you?
  22. thanks! LLM -- i'll send you a PM later!!! do you have symptoms you know of as sulfur trouble? I have thought in the past that my ds and yours have different symptoms, but my ds and you dd are more similar. still draggin' my feet on 23 and me -- possibly this summer.
  23. long ago - ds had definite improvement with motrin. I used to call it magic motrin. we used it in exacerbation and even sometime prophylactically. I would not say he has had an exacerbation in 2 years but he did have some issues this spring. we do believe we know the root cause. I am looking for something we could use to help smooth symptoms when/if we have these mini-storms. I have had interest in enhansa but have only really heard of it used long term -- building up to full dose. and I've never heard of anyone getting off it. I also think I have only have heard positive stories about great improvements in stronger autism symptoms. and, when you get up in those doses, it seems darned expensive. I've recently become aware of thorne meriva SR. I am a fan of thorne as of late. anyone know anything about that? I like to use summer/school breaks to experiment for ds10. he's so darned sensitive to a lot -- penicillin rashes, paradoxical reaction to GABA, I still haven't found a D3 that he doesn't react negatively to. so, I was thinking about trying him on one of these. any opinions/knowledge of these used in a short term manner? thanks!!
  24. I am looking to make some changes during summer --- ds12 seems to have better focus from zinc -- have never tested levels for him - yet he is negative for pyrrole disorder. he has been taking soloray biozinc 15 mg combo of zinc picolinate and zinc citrate + b6. this may be hard to evaluate b/c obviously he needs less focus in summer -- but I like to make changes then -- perhaps I should rethink that -- ??? idk -- he's in middle school and I don't so much know anything anymore - I have become more a fan of thorne products and am thinking of switching. they offer a couple trace mineral blends. mainly one is citrates and the other is picolinates. neither has b6 in the formula. any opinions on the absorptions and effectiveness of either? opinions on importance of b6? thanks!!
  25. excellent. yes - I'd say check that out thoroughly for the time frame. watch the sun on doxy!!!!! I got a bad burn even when I thought I was being very careful!
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