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Everything posted by smartyjones

  1. ds has gotten back to baseline after a difficult fall/winter with Lyme/Strep/Myco - the trio from ######. of course, it was a disastrous school year.(I'm horrified and disgusted - but that's another story) he is now having almost a type of PTSD with school work. he seems to be set off in almost an impulse control way when tasked with doing certain topics -- writing is always a trigger; explaining math is troublesome. he has a hometeacher coming and now that spring is here -- it is painful when she comes after 4pm. he is calm and reasonable before and plans to get it all done. when it's time, he is so frustrated and cannot get over it to just get the work done. after, he's okay. he has then had to do it and gets the connection of the wasted time - so it's not a matter of just getting his way and/or trying to get out of something. incentives make sense when we discuss before hand, but he can not see it through in the moment. he's not wrong -- what 10 year old would want to sit at the kitchen table and do independent worksheets while someone watches you in the afternoon when school is supposed to be out anyway. however, this is our current situation. I was wondering if I may try lithium supplement. any thoughts?
  2. thanks maryaw for the run-down! maybe you can give me your insight -- am I right in assuming your questions were regarding long-term prophylactic abx? what if a kid has been in long-term remission and then gets an exacerbation? is that exacerbation treated like the initial in terms of assessing use of prophylactic abx -- I mean, on abx for at least a year symptom free? is prophylactic discussed mainly in terms of strep for PANDAS vs. all infections of PITAND? here's my trouble with long-term abx -- in addition to the usual -- we had known infections of lyme, strep and myco since Sept. each was treated as acute and he is back at baseline. obviously, watching, charting, blah, blah, blah. he is not on prophylactic abx. for one - he has allergy to penicillin. but - if we think we are prophylactic for strep -- that wouldn't have avoided the other two. when I weigh everything, I'm not sure it makes sense. am I looking that it would have been 2 instead of 3 and that's a little better vs. avoiding all?
  3. The local TACA group is hosting Dr. O'Hara for a FREE evening talk, April 2, 2015!!! It will be at the Anne Arundel Community College, 7 pm. 7009 Arundel Mills Circle, Hanover, MD. There is limited seating, you must register. Please PM me for the contact to register (I don't have authorization to put her email on this site, but I can PM it to you to register) Approved by Administration for Posting
  4. after a quite good remission, we have dealt with definite Lyme and Strep in the fall. then possibly myco. he reached what appeared to be back to baseline about a month ago - but - has seemed to have a 10-day incident of overreaction. it is one incident during the day, but it is extreme. I looked back and it has followed a 10-day pattern for 3 times. I know there are some bacteria that cycle. any thoughts? thanks.
  5. Thanks for the info. Just to clarify, the mg listed is for the full bottle, right? Is there any thoughts on dosage? what do you guys use? Mayzoo -- have you ever tried the Dixie dew cinnamon that seems to be a part of cibdex? how has the vanilla worked out? Thanks.
  6. sorry to hear the increase in symptoms despite prophylaxis and good run of remission. I'm with you -- it is heartbreaking to have a downslide after good times. ds10 had about 2.5 years of remission (despite school issues due to learning issues but good health) and slide this fall with Lyme in Sept and strep in Dec. just curious, what were you doing for prophylaxis? have you left it at that level, or increased to treatment level? I think the age thing very much sounds like PANS-related OCD. my ds was doing something along the same lines with obsessive thoughts about rock bands -- "who is in the band? are they still alive? how old are they? what age were they when they died? how old were they when the band broke up? how old were you when you first saw U2?" music and his favorite bands is something that he is interested in, but it was to an obsessive level. it did subside with antibiotic treatment.
  7. Can people weigh in on their experiences and thoughts on cannabis oil use lately? Are there thoughts of some brands better than others? Thanks.
  8. I'm asking for a friend . . . what do you think of these symptoms? school work refusal, when stressed due to difficulty with adults over school issues, chewing up things (paper, teacher's flash card) and spitting out, touching other kids' things. following other kids around the classroom. social trouble at unstructured times, poking another kid. at other times, cooperative, participating appropriately. licking things -- people, papers.
  9. beerae22 -- trust me - I am with you - I know the traumas of blood draws and many other things. I also know the power of the mind. we have not done a blood draw in a long time and we will likely have one coming up in jan - so I may be eating my words soon. our last blood draw, again - maybe 2-3 years ago -- cost me quite a nice nerf gun. but. . . it was worth it. and I don't at all consider myself a bribing parent. about 2 weeks ago, we had to do a throat swab, that again, we had not done in a few years. we made a deal of however many seconds it took to do the swab, if he remained cooperative, he would get a sticker on his challenge chart for each second. the nurse thought it would take her 2. she was right. so - he earned 2 stickers on the challenge chart. he was cooperative, it was over quick and he was thrilled that he earned 2 easy stickers. he was focused on the stickers, not the swab. I think that's the key -- what can you get her to focus on instead of the blood draw. who is their right mind could do it if they focused on the blood draw? the challenge chart is a modified potty chart that they(both 10 and 12 years old) earn for doing things they consider a challenge. it still amazing me they will do things -- like ask an attendant at a baseball game if they can sit in the expensive section at an empty game that they never would do otherwise (and he let us after the 4th inning) our psych suggested it that they need extra motivation to do something -- I used to not like this as bribery -- but it's more of an immediate payoff for them that they can't otherwise see. and no - he couldn't see sitting in the good seats as the immediate payoff even though he really, really wanted it. (a good friend of mine's mother once told her when she was complaining that he kids didn't cooperate, 'you wouldn't work either if they didn't pay you.'.) so then, those experiences build on each other... 'remember the time you asked if we could sit in those seats. . ." so -- a blood draw is more troublesome and longer. but, I am planning on doing something similar. I think the key is his buy-in. sometimes, want he wants is easy and reasonable; sometimes, it's ridiculous. then, we negotiate, and we can usually arrive at something that works -- unless he's in extreme exacerbation. he's 10. I don't know how old your dd is. I'd say, start with just some simple exploratory questions about how she feels and thinks about blood draws. what might make it worth her while if she ever had to do it again? then what may make it reasonable for you if you were asking her to do it. the bottom line is. . . wouldn't it be great if our kids were just cooperative and did what they were supposed to? they're not and they don't. their brains are under assault and we have to make up for it. I'm not saying give her the world to do it -- I'm saying try to turn it into a teaching moment for her of a time when she has to do something she doesn't want to(which all of us have to) and how can she work that to her best advantage.
  10. I am really beginning to lose my mind!!! ds10 - definitive PANDAS - in good state of remission until this fall. sept, EM Lyme rash. 2 weeks ago, positive rapid strep. doing pretty well now, healthwise -- except school is an absolute disaster -- I don't think it could possibly be worse. ds12 -- a few weeks ago, occasional complaint of chest pain. I was wondering that is seemed to somehow correlate with cheese eating -- like mac and cheese dinner - I was thinking this could somehow be heartburn or some dietary problem. have noticed some increased inattentiveness in past few weeks -- dh forgetting to give him zinc in morning -- seemed to improve when remember zinc. 3-4 years ago, he had PANDAS symptoms -- couldn't be on a floor of the house alone -- I'd almost trip over him as he was right next to me; intense nighttime fears; 'robber' fears; very troublesome endurance when playing basketball (normally good athlete) integrative doc diagnosed trouble with strep, lyme, bartonella, babesia. ped diagnosed exercise induced asthma -- had chest X-ray, EKG. saw slight heart murmur. symptoms improved with homeopathic treatment from integrative MD. currently seems healthy -- slight tics that come and go (usually with virus) --not really noticeable to anyone but us. irritability and inattentiveness that comes and goes -- but he is almost 13. tonight his chest was bothering him. I am now panicked if I could be missing post strep illness this is symptom of. he has not been swabbed. it's other son that was positive. *%$# - I should have had him tested a few weeks ago. am i just some overwhelmed and worried or should I be paying attention to something I am not? any thoughts? thanks.
  11. I gotta tell you dasu -- I know it's really hard to see the positives and things to be grateful for in the thick of it all. . . if these are her words to mom "I want to like you but I feel like I don't...but I always love you I think that is great articulation and knowledge and expression of feelings for a 5 year old! I know the words may feel rough -- but I'd advise you to see the expression and work to build on that. even when the expression may be not so nice and may be delivered harshly - I'd say compliment the expression and give some tips - but I see that expression as a positive!
  12. Lyme EM rash in September; positive rapid strep test today. Horrible school semester! Poor kid! Good news is he's actually doing okay. I've learned so much in the past 6 years (thanks largely to many of you here - thank you!) that we can weather these storms. We just can't weather the school and their lack of understanding.
  13. please give good ideas of specific educational tests. has anyone actually done the rey complex drawing test? can that be done by a school or is it a more complex neuropsych test? are there specific tests that can test out sequencing issues? thanks.
  14. any thoughts/experiences with nosebleeds? I really don't think I've seen fingers in the nose for some time. I'm going to have to keep track - but I am thinking he gets random nosebleeds once a month-ish.
  15. I don't have a psychiatrist - but may be able to recommend a few psychologists what are your goals in seeking someone?
  16. thanks 911! I read that book back in the day and thought it may be something to consider. we did some testing with a 'sound guy' - I can't really remember, I think his practice was some combination of speech therapists and OTs. he didn't have so much for us because of course, ds tested as a 'maybe' for whatever he was testing - as he did for every other condition or syndrome -- but a 'slam dunk' for PANDAS. we considered doing therapeutic listening - even bought high quality headphones for it - but didn't pursue it. likely some other trauma or drama drew our attention away. as ds got healthier - he lost a lot of the concerns that were sending me down that path. he recently had active lyme, which, thankfully, he seems to be out of exacerbation from. however, when I've seen mention of auditory issues, it grabs my attention again. -- perhaps this exacerbation inflamed those issues again. it might be good to read the book again. I heard from a music therapist at a recent TACA meeting. she was quite interesting. ds seems to know what to do socially, but doesn't so much always put it into practice. she was thinking she may have an impact. thanks!
  17. ds is back in school -- umpteenth meeting scheduled in Dec. I call one of the premier clinics - supposedly one of most revered for child development ( but alas, is an arm of our most ill regarded centers for PANDAS)- for eval -- trying to get it under insurance, because it testing is only going to tell us what we already know -- may offer some more info which would be bonus, but we know what we need to, we only need to use the info we have. granted, this is only an intake person, but still frustrating. .. "would you say he is performing on, below or above grade level?" Me - that's the whole issue. he's twice exceptional, so he's all -- above, below and on grade level. it depends on the task. Her -- I'm not understanding, would you say he's performing on, below or above grade level?" Me -- I can't answer that -- that's the whole reason he has trouble in school and the whole reason I'm calling for eval -- he performs all three -- on, above and below grade level, it depends on the task he is asked to do. Her -- I don't understand. which is it -- on, below or above grade level? Me -- it's all of them and none of them. he is on, below and above grade level in different aspects. that's the whole reason I am calling for eval. Her -- okay, I'll just pass this along.
  18. i don't think I will ever forget the words of the fabulous behavior therapist who first diagnosed my son. . . "what you're describing sounds like OCD, but he's awfully young. there is something I don't know much about called PANDAS". I strongly thought -- "OCD -- what? this doesn't sound like any OCD I've ever heard of." during exacerbation my son has 'just right' OCD. and that is not necessarily just right to line things up and be orderly. it can take the form of 'it's not just right as I had envisioned it." "it was not what I was planning/thinking". this can result in many 'unfounded' tantrums and even rages that it was not what was in the kid's mind, so XYZ may happen or not even progress to the end result, but it's just not right - and that's enough to cause a lot of trouble. it can be difficult or impossible for the kid to explain - often because it may even be difficult for them to understand - or it may be terribly horrific so they don't want to even put it into words. I think my son had some obsession that if he didn't do things exactly as his brother - like putting pants on a leg at exactly the same moment, or putting food in their mouth at exactly the same time - some bad fate will befall his brother. something like that is so very difficult to dissect and understand -- it just looks like a child freaking out and being controlling of a minor, insignificant detail. people observing think, "what's the big deal?". well, if you think your brother's life hinges on how you put your leg into a pant and you're 5 years old -- it's terrifying. can you imagine the weight of your brother's life/health hanging on your 5 year old ability to do things exactly as they are somehow supposed to be done? how could you possibly explain that and ask for help? especially if you are also experiencing expressive language troubles and your thoughts are jumbled anyway. stacestar -- I'd say you should encourage that dad's likely very in-tune thought of 'this isn't normal'. I think that's the biggest thing we have going for us as parents and it's frustrating how often other well-meaning friends, family, teachers and medical personnel try to talk us out of it as a 'phase' or some other nonsense when we know there is something not normal. good luck!
  19. who thinks they would freak out when asked for a 'records release authorization' vs a 'release of information' for doc from school? am I just too stressed or do you also see a HUGE difference in the wording of these two?
  20. please remind me -- what is the probiotic that is not really a probiotic that is not so easily killed by antibiotics? does anyone know what I mean? thanks.
  21. full disclosure that I learned this from an episode of "House" aboulia is the inability to make a decision or exercise free will; a reduction in action, emotion and cognition; is a frontal lobe issue; may be dopamine-related dysfunction basal ganglia issues often result in the inability to initiate speech, movement and social interaction; also often some form of diminished motivation aboulla is featured in many neuropscyh disorders I most likely think my ds's inability to make a decision is due to OCD of the just right type in that he is fearful of making the wrong decision, so he cannot make any decision. he experiences this during exacerbation. during extreme exacerbation, it is extremely difficult, if not impossible, to break through; thus why I found this concept interesting as not OCD based but brain function based (of course I know OCD is brain based, please get my meaning) has anyone who sees 'the pandas docs' had them discuss this concept or do they just speak of it in the extreme OCD terms?
  22. norcalmom -- have you read or hear of http://www.amazon.com/When-Brain-Cant-Hear-Unraveling-ebook/dp/B000FC0WOM/ref=sr_1_1?s=books&ie=UTF8&qid=1414629888&sr=1-1&keywords=auditory+processing+disorder I read this a number of years ago when ds was in the midst of the up and down and hadn't really reached what I think of as his first real remission. i'm not sure I get what you mean you say it falls to audiologist but you think that is wrong b/c it is pandas related. I don't think they are exclusive situations. I think it's brain processing so of course, it's pandas related. when ds was really sick - he was all over the map and I've read it all -- the famous sensory book, this audiology book and too many to think of of all the disorders. personally I get migraines with aura and depending on the severity, I may have lingering symptoms for some time. one night, I was feeling better and was out of bed and sitting with dh watching TV. he said something to me about 6 times and I kept replying 'what' although I was sitting right beside him. I finally said --" forget it - I hear you fine, my brain just can't understand what you are saying." this was around the same time ds was having issues it was really interesting to me b/c it gave me more perspective when ds didn't answer or asked something 6 times. idk, you may want to re-investigate it from an audiology processing disorder viewpoint, if you haven't. idk - I do also think it's is bizarre that it is only you -- but perhaps it's not -- perhaps it's only you he can't control his reaction around.
  23. oh momslove -- YOU are. I know where you are and how you feel but it is you and even if you don't realize it now -- some day you will know that that is actually a powerful place to be and you are the best decision maker for your child. I had some trouble, not serious, just mainly discomfort and 'crookedness' late in the pregnancy with ds10. I saw an acupuncturist that really was able to help. at one appointment, she said to me, 'please remember you have all of the strength of all the woman who have gone before you in this.' so, I say to you -- please remember, you have all of the strength of all the parents before and with you on this battle path. 3 years ago when ds was having trouble with school and left school to finish the last 7 months of 2nd grade on hometeaching (especially sad b/c it didn't have to go that way - but we couldn't reach understanding and agreement with school) - our wise psych tried to impart to me that it was okay, because it was up to me, in the end, I was the one who could make the decisions. at the time, it felt horrible and I don't think i'll ever forget crying in her office that I didn't want it to be up to me, I didn't want to make the decisions.l now, unfortunately, we are facing the same situation (although possibly a better outcome b/c of more caring school) I KNOW that that is actually an empowering situation and I wouldn't want it any different. Good luck!
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