Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by smartyjones

  1. yes, i think 'cure' is the wrong word. and while you are in the midst of the 'dark days' now, i am confident there are bright days on the other side of the tunnel for you and your son. you are relatively still new in the timeframe of your diagnosis and treatment. you will reach a time when you have more of a set plan and you know what to pay attention to and have some tricks in your arsenal to throw out at it. my ds was diagnosed almost 4.5 years ago - when he was 4.5 -- so half his life ago. i'd say he was sick with symptoms, exacerbations and remissions, us trying to figure things out for about 2.5 years. he's been on a very good healing path for 2 years. during those 2 years, there have also been ups and downs but we've been on much more solid footing to know what's happening and having a good plan of what to do to try to curb it the other day,i was trying to explain something to my sister about 'just right' OCD and i was having a hard time remembering some of the phrases ds used to say and with finding examples to tell her. i do remember the feeling that we were in a big abyss and were never going to get out -- but now, i can't really remember the particulars of the hole. of course i could easily find them in my copious notes and binders -- but i'll leave them be for now. this month, he's just experienced going to his first sleep over party, (which went very well - with a family we don't even know well!), went to school without a word 2 days last week that his brother was home sick, is today happily going to an after-school activity by himself that his brother dropped out of, is doing very well in school academically and socially, and has some quite good problem-solving skills for an 8 yr old. so yes - i believe you will get him off the couch. maybe not today or tomorrow - but you will. although we don't see dr t, i have great respect for him and that he will help your son. you will find the plan(s) that you need and at some time in the future, you, too, will have to grasp to remember what is so burned into your experience today.
  2. i'm sorry -- i'm not really able to respond to your original, actual question -- i know nothing about ssris. my ds was originally put on a 5 day course of azith for pandas and had a horrible reaction initially. he improved when he got off it. i did want to mention something else -- you say 'unprovoked' -- i'd ask exactly what is happening at the time he goes off in this tantrum. it could be that there is something that is a trigger to him that appears completely benign to the teachers. -- is he changing classes, activities, particular people -- ? OCD can be very tricky and very difficult to decipher, especially if you are just beginning to look at it as OCD. there was one time my ds would not come inside and end the family baseball game -- there had been plenty of timelines, warnings, etc. that the end was nearing. on the surface, it appeared as if he was just being defiant and wanted his own way. that particular instance, he was able to express that what seemed to everyone else a reasonable time to end ( thru the batting order or something) was not to him. he was on 2nd base. he NEEDED to come home or he would be left on 2nd base all night and that was absolutely intolerable to him. he has 'just right' OCD and that was not right at all. had we not understood this, it easily could have been an extreme tantrum. so -- i'd wonder if there is anything like that happening at the times he loses it in this extreme tantrums. good luck!
  3. OMG -- i love it!! definitely signing up. can't say i think dh is going to be as excited about this find. thank you, LLM!
  4. LLM -- do you build up a level with quercitin before allergy season -- or do you just use as needed? thanks.
  5. sorry Mary -- i somehow missed it that you were talking about your daughter, not son! did the symptoms go away or slow with stopping the remedy?
  6. i can't answer so much about the feeding of lyme . . . but my ds is also low on d. long ago, i tried supplementing him and always thought i saw an uptick of symtpoms -- it was 2000 ius i was trying with him. this past summer, we added a new doc and he tested d -- it was 20.5. we were adding some other supps, so i wanted to keep d out of it b/c of past trouble. over christmas break, we began adding 200iu. ds seemed to have reaction when we reached 600iu. symptoms abated when we went back down to 400iu. everyone finds this strange, esp b/c these are pretty low levels to be supp. and for only 200 ius to make a difference. but, the reaction and abatement were obvious and we had no real other variable. just tested again, only ~7or 8 weeks of supp (did b/c was time for others, not so much only for d) still low at 20.8. i'm not sure i'm going to be willing to put him up again until summer break b/c school is going well and i don't want to screw with that. i think doc is not going to like levels - he suggests supp of 1000/day. did you see the post on pandas board about supping with vit k when supp d? i may try that rather than adding more d. 5000 sounds very high to me -- perhaps you could discuss with doc a plan of moving up to that gradually and/or watch carefully for reactions -- ?? i think most think there should be no reaction to vit d, but i fully believe in it and there are posts on the pandas board from others who have seen it as well --please let me know what info you get from doc. thanks.
  7. LLM -- have you seen any negative from lysine? what dosage do you give? thanks. -- and it's always Worth very much from you!
  8. interesting SFmom -- he does have issues with high copper -- really more of an inappropriate zinc/copper ratio. is copper considered a 'heavy metal'? i believe it is ?? we have been supplementing with zinc and seen good results -- i wonder if this could be a reason for the return of trouble with HHV-6.
  9. are you familiar with anxietybc.com? i've found it to be a great resource.
  10. have you checked out pandasnetwork.org. go to resources - then for the school. http://pandasnetwork...for-the-school/
  11. Mary -- we have treated quite successfullly with homeopathy. prior to PANDAS, i used homeopathy for myself and my kids for the normal minor illnesses with success. for PANDAS, we work with an integrative MD. i would definitely suggest someone trying to treat significant issues work with a qualified practicioner. i assume you are talking about a traditional, constitutional approach where the homeopath took much information and suggested a remedy based on your son's constitution. we use more of a sequential approach, where the remedies are used more like traditional meds to treat conditions. but, we have used a constitutional approach also. our doc does both. generallly, those with a constitutional approach usually don't agree with doing both, nor with a sequential approach. IMO, a naturopathic approach to treatment can very much result in a herx-like reaction. i think it is more talked about and expected in naturopathic world than in traditional medicine. it is often referred to as a "healing crisis". it may be that there is still something in his body that would cause this for him that has been in a latent state and the remedy has brought it to the forefront. we began treating ds while still in the throes of pandas, so we were still in a very much wax and wane posiition, so unlike your son who it sounds like was in a remission state when you began treating -- is that correct? my ds had his most severe symptoms in relation to a homeopathic remedy for a virus. he had severe contamination eating refusal. he drank just enough to keep himself out of the ER. it was maybe 5- 7-10 days-ish - i think i've blocked a lot of it from my mind. we were working closely with our doc during this time. it was quite scary b/c it involved eating/drinking refusal and at the time, ds was maybe 50 lbs and had NO room to spare. our doc saw him maybe on the 2nd day and was confident it was brought on by the remedy and would pass quickly. what is the remedy? i'd say definitley get in touch with the homeopath -- they may want to change something or see him. certainly cannot say all is okay for you and i find restrictive eating issues ones that MUST be paid close attention to, BUT, in our experience, we did experience what you are describing, it was in relation to the remedy, and it passed -- although not without trauma to us all during that time - and ds has not experienced such symptoms since -- even when put back on that viral remedy a year or so later. Good luck!!!
  12. my ds has had many issues with viruses. we treat with homeopathy - he's in a very good place of health. however, he still seems susceptible to transient issues -- many are latent viruses that will always be in his system that seem to reemerge periodically to cause trouble. last summer, we added another integrative doc working on more of a 'bolstering the system' type of approach. so -- we have one integrative MD who works as our sort of infectious disease doc and another that acts as our strengthening the system doc. i'm happy with this approach and have seen good results. i'm still feeling we're in a 'takes a lot of time' realm on a path to full health - and we've seen good results and are still in a good place. but, i'm always aware of needing to have plan B, C, and D ready if needed. So, I'm curious ----- what are those with HHV-6 issues using to treat? thanks!
  13. my ds has been in public school for 2 years -- entered with me giving info about PANDAS, has a medical diagnosis for PANDAS, psych diagnosis for Anxiety -- last year, immediately started proceeding for 504 but unfortunately, school personnel didn't understand him, i gave too much info so they thought it was some condition from outer space that only i understood, i ended up in the school basically working as his aide - all fell apart in a flaming disaster and he ended up on home teaching for 7 months. this year, is wonderful - great school with great personnel - they understand him and he is doing well. he does currently have a 504. however, i have not understood these basic facts about the differences btwn 504 and IEP until last night at a SPED citizens group where the County 504 Resource teacher spoke. I see it now in the 504 handbook, i see it in a post from Oct 2011 that i asked differences here and got extensive answers from wise friends here. BUT, i don't have any previous experience with SPED and when these words - such as "accommodation" were used, I didn't get it until last night, where she used more pointed language, so it made more sense. So - i want to share in case anyone else doesn't get it also--- 504 and IEP are administered under different laws -- IEP is IDEA - Individuals with Disabilities Education Act - ensuring services and interventions - with the goal of remeditation; 504 is the Rehabitilitation Act of 1973 - a civil rights law protecting against discrimination-- it's purpose is to protect individuals from discrimination based on the disability and provide equal access to programs -- NOT remediation special ed provides remedial instruction to address deficits that are educationally impacting students; 504 provides equal access to 'even the playing field' for those who have a substantial limitation -- as in spec ed would help you learn how to better use your legs or crutches to walk; 504 would provide you a ramp to get into the building 504 is NOT a mini-IEP; a door prize that you get to help b/c you don't qualify for IEP, nor a 'step-down' IEP -- it's focus is on accommodation - providing a way for you to live with the impairment, NOT on improvement I think my disconnect has been with the definition of the word accommodation. i have no background in education nor laws concerning civil rights. so, when we were discussing my 7 year old, i guess i just naturally thought we were talking about how best to help him LEARN and adapt, so it never even occurred to me that the word accommodation was not referring to seeing his struggle and helping him learn how to overcome it -- it means seeing his struggle and providing a way that it is not such a struggle, but assuming it will always be there. So, it IS written in the literature and the people developing the plan use the word accommodation -- i just didn't realize i wasn't on the same page as to what that meant.
  14. so -- my ds started out as "pretty straight-forward PANDAS" -- sudden onset, high titers, positive throat culture, 100% remission in about 3 days when he got on the right abx (horrible reaction to azith, remission seen with keflex). he did have wild tantrums needing me to whole-body restrain him, much screaming and yelling, cognitive inflexibility, hding under things or liking to be in small spaces. the remission didn't hold once he went off the abx - symptoms returned about 30 days after the 30 day course was over. that sent us on our healing odyssey we are still on today. we discovered many other bacteria, viruses, parasites, copper/zinc imbalance. my sister is currently being treated for lyme. i am quite sure she tests neg for bartonella (likely thru quest or labcorp); however, her doc believes her symptoms to be indicative of bart and is treating her for it. i do believe that can happen quite often. i am a huge fan of the book "The Explosive Child" by Ross Greene. Have you read it? I don't so much recommend it for you to change her behavior as i do for you to have suggestions on how YOU react and interact with her when she is explosive. It helped me immensely to be with him in a positive way at such trying times but not get dragged into the tantrum.
  15. I'm so sorry to hear of all you and your son have been through -- not the least of the blaming on divorce and long work week! I certainly find it suspect that you have done many interventions that have not seemed to be helpful! I'm not sure how much research, etc you have done, but please remember that it is not only strep that can cause this illness. The 'S' in PANDAS is strep, however, I don't know where the 'official' name change stands, but it is chaning to PANS and there are many papers, research,etc about the many other triggers -- so aside from the fact that titers are not too high and that is not really indicative, especially if he has been sick for a long time -- there could be other triggers which easily explain lack of strep markers and not stellar improvement from abx -- such as viruses, mycoplasm, lyme and other TBI. is Dr. K suggesting IVIG? has he discussed all the other triggers with you or are you only discussing strep?
  16. kleek -- i would say since you are very aware -- stick with what works!!! i am not too knowledgable on abx. my ds was initially on azith and had a horrible time. he had 100% remission on keflex -- i think in the same family as cefdinir, but not sure. he was on it for 30 days. once off, after about 30 days, he slipped back into behaviors. he went back on, but initally not at the same dose and did not have the same amazing results. this was long ago and we were in our first few months -- we had thought he was cured and 'it' was over! how long is your current script? there is still so much that is not known, your clinical observations are invaluable!! we later went on to find multiple infections - but i think it was strep that overflowed the bucket and when strep was being dealt with, his behaviors ceased. but in the long run, we needed to deal with everything else also to reach full health. please keep us posted what dr T advises for you. thanks. good luck.
  17. https://www.facebook...&type=1 a friend of mine posted this on facebook and i thought it was so appropriate for the parents and kids of this forum!!
  18. can someone give me the link to the weekly (i think) radio program on pandas? it's been on my 'to-do' list to go back and listen to. Thanks!
  19. i'm not totally familiar with ALCAT but know it's a food sensitivity. a number of years ago, around time of onset for ds - 4 yrs ago - we had a food sensitivity panel blood test IgG levels for something like 96 foods. he had just been diagnosed and had a disastrous first run with azith. he came back off the charts for over 15 foods -- all diary, most gluten, eggs, peanut. he did not have gastro or eating troubles but had always been thin and was beginning to fall off the weight chart. we were seeing a naturopath who did the test. we took him off all those foods. he did gain some weight in the first few weeks -- at the time, he was 4.5 yrs old and somewhere in the 30s - lbs. so only a few pounds was significant for him. unfortunately, becasue nothing exists in a vacuum - we also had gotten a new ped around the same time and he put him on 30 days of keflex. ds had 100% remission in about 3 days. that didn't last when he went off the abx. even at the time, i felt the behavioral improvements were due to the abx, not the food changes. we kept him on a strict GF/CF diet for likely 2 yrs. he had exacerbations and good times while eating that way. as his health improved, we slowly moved from that diet. he now eats everything -- unfortunately, he does prefer gluten and dairy. i say unfortunately not from a sensitivity stand but that i don't think those are the healthiest foods. i actually think a GF/CF diet is a stunningly healthy way to eat. i don't think anyone actually needs those foods -- it's just that it is so very different from the way most people eat. and, once you get into it, it's not really even hard, again, it's just so different. we did not do a lot of packaged gluten free -- mainly b/c my kids were more resistant to fruits and veggies, so i was not going to buy them a $4 bagel, if they couldn't eat strawberries. i don't eat a lot of meat, and he ate more meat than i would have preferred for him during that time. we added the foods back slowly and saw no differences -- other than a quick weight gain when we removed all restrictions. he was always quite thin and is now a little chubby. i think it was likely a shock to his system - and like i said, he was preferring bread and cheese - but i don't have concerns about his health in those terms. my feeling about it now(and generally even when we did the restrictions) is that he didn't really have sensitivities as his main issue (i do firmly believe that some people do and removing certain foods can have wonderful effects if that is your issue) but that his system was in such a terrible state of disarray due to infections and subsequent imbalances. i think the removal of those foods was helpful for him to move along a healing path b/c it took away just yet another troublesome thing that his body was trying to deal with. i now put him more in the class with everyone else that those foods are not really so healthy and anyone would be better off not eating them, but not that he is particularly troubled by them. we have never done the blood test again -- i'd like to for curiousity but don't think i would abide by it too much so am not willing to spend the $. we do see an integratvie MD who does a form of energy testing that shows these foods not a problem for ds. i think likely the most accurate test is clinical observation of effects - behaviorally and medicallly - of the foods vs effects of removal of the foods.
  20. posted with permission April 6, 2013, Malvern, PA http://www.realhelpn...ogram-schedule/ i'm planning on going -- please anyone else who is, let me know!!!
  21. http://www.worrywisekids.org/node/40 not sure where your support is for the actual accomodations, but you might find this helpful -- at least to give you an idea of what might be reasonable to ask for. it's also nice that it comes from somewhere other than just you good luck.
  22. where are you? i'd like to try to start something.
  23. my son had a absolutely horrible time with azith when first on it for pandas. he had sudden onset, high titers and a positive culture. he was put on 5 days of azith and it was awful. he had had some improvement in behaviors and all returned with a vengenance. about a month and a new ped later, he was put on 30 days of keflex and had 100% remission in about 3 days. unfortunately, it didn't hold about 30 days off abx. we later discovered multiple infections - many viral and lyme. i believe lyme is part of his 'cocktail' of infections but not a major symptom producer. i have heard azith can cause a herx for people with lyme. i don't know if it was this it or if he just had a hard time with zith. i doubt i will ever have him on it again to find out. i don't know that i would think trouble or non-response to one abx would be enough to say not pandas -- i think it would have to be not a response at all to multiple abx. and even then, there could be many other factors as well -- such as PANS triggered by viral issues, which has an infectious root but wouldn't expect to be mediated by abx.
  • Create New...