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Everything posted by smartyjones

  1. just suggesting you may want to research d-lactate acidosis. is generally something very rare that only occurs in people with short bowel resections. it's bizarre so no way i can really suggestg i think that is your son's issue -- just mentioning it could be something you may want to be aware of. i believe my ds expereienced something similar while taking a high level probiotic. i think it is commonly talked about in the autiism world that kids can have trouble with d-lactate. also, my son did have issues with parasites and did have the same symptom you mention.
  2. i have just begun using this again -- i used it a while ago for rmyself and crushed it up for ds. i'm not sure what happens when you crush and swallow sublingual -- but it was the only way he'd take it. i think at the time, i may have felt more energy. but don't remember big differeneces. i just tested low/normal with b12 and for MTHFR 1298. i still haven't been able to find good info, but there does seem to be a b12 connection with 1298. i get migraines with aura. there is some evidence of possible b12 issues. i was getting b12 shots for 8 weeks and have just switched to sublingual. it's hard to tell but i actually think i am not feeling as good as with the shots. i have gotten a couple of migraines also -- seemed better on shots. unfortunately, b/c nothing exists in a vaccuum - my integrative MD beiieves migranies are infection related and i have also run out of the antiviral i was taking. it's kind of the same juggling act i try to do for ds -- i see an integrative MD and a neurologist and ty to piece it all together. i take source naturals 1000mg. when i was researching in the past, i found suggestions that methyl is better to take than cyancobal. i can't really remember -- i think meythl is more an active form -- ? ds is on a new vitamin prescrip and it is compounded and they use methyl. what are you trying to accomplish with the b12?
  3. i did notice in the past with my son -- and i recall discussions on this forum -- about likely flutctuating blood sugaar levels being problematic. not to the serious level of diabetics, but i recall discussion from many parents noticing some correlation and trying to be sure to have snacks handy . since you mention noticing this, i'd try to keep snack nearby to try to help even things out as you are figuring it all out.
  4. dont' have much time now but. . . does she have any history of migraine headaches? the weakness and numbness in hand can be migraine related. i get migraines -- our integrative MD beleives tick-borne illness related. first began when i was around 11 -- i have aura with them which entails many strange symptoms -- easiest way to describe is stroke-like. there is some tie with magnesiium and migraines -- many people use magnesium to help try to treat. you may want to google or mention to a neurologisst. let me know if you want more info to investigare if could be that.
  5. hopeny -- interesting b/c when i was writing my reply i was on vaca with my mom -- a retired nurse. she asked why when all that was going on with my son did the ped send him to a cardiologist instead of a pulmonologist. she didn't really think of it at the time but now it seems odd to her that we didn't go to a pulmonologist. how did you end up at one? i do think my son's issues were infectious based and we see the integrative MD who treated him with good results. i wonder if i should investigate a pulmonologist just to check out his lungs?
  6. have you read Kenneth Bock's 4 As? he has a vacc schedule in there and he makes some distinctions between daycare and non daycare. my kids were fully vacced when i read it but i did wish i had read it when i was tryhing to do vacc research. when i read your post, it reminds me. . . ds had strep at 22 mths, pandas onset at age 4.5. i cannot remember when it began, but he would have random fevers and/or throw up. he'd not feel good for a little while and then get over it. at the time, we thought it was just how it body was processing whatever he'd been exposed to. there's no way for us to ever know, but now i wonder if he had subclinical level of strep (or the many other viruses he has been treated for) and that flaring was causing the trouble. i agree with your doc -- you are more aware and alert -- and i think you are likely noticing something that is causing your daughter a problem.
  7. yes, involved with wilsons - but also for copper generally in the system. there are two types of copper -- attached to protein and free. i can't recall right now b/c i don't have paperwork in front of me-- i think, a general dr will use this to check for wilsons (also valuable to do). other docs use it to see copper levels and determine if they think there may be copper overload or zinc/copper imbalance. there is a way to check free copper and i think you need ceruloplasmin to do it. check out copper search from a few months ago and there will be some links i can't recall right now.-- i have seen studies with criminal populations and i think there is one with autism indicating inappropriate copper ratios. there is a fabulous House episode where the woman has undetected wilsons with great lines,something like. . . . "psychopathy is not a symptom" "perhpas psychopathy is a symptom" dr t -- never ceases to amaze me! he's on the ball!! did you ask him why he's testing it?
  8. school is starting next week and with our history -- my anxiety is through the roof -- i'm downing the GABA -- seems to be helping. ds has history of extreme school phobia. he's also quite clearly twice exceptional -- although never really had good working strategies. he's entering 3rd. he is beginning at a new school -- a charter school with a bit of a 'different' philosophy. for those who know me, they mention Ross Greene (Explosive Child) in their discipline policy -- my head almost exploded (in a good way) when i read that. i had a very good meeting today and they seem on the ball. they are planning to basically begin again after disastrous last year with new evals - that were never properly done - and new plans. ds met with school psych today and it went well. the plan is basically to ease him in at his pace -- he was on home teachng since last Nov. he'll be in school all day but maybe not in classroom. maybe in separate resource rooms or something(not self contained spec ed) . this school is seeming to much more take over than last year, who basically had me working as his aide so they didn't have to allot resources. i think i now see partly my error was being too knowledgable about his disorder where they knew nothing. i am willing to let them do their work -- although it is hard b/c of past horror. my question to all my wise friends, is how can i work in our sphere and how can i support the school in what they're doing in the fine line of allowing him to do what is comfortable so he can accomplish it, but not so comfortable that he is in too much control and ends up avoiding? a litle bit of a separate question-- many of ds's problematic behaviors are "asperger-like". i don't think that is the correct diagnosis for him - PANDAS is. however, in the school world, Asperger carries alot more weight than pandas. what would be trouble if that allowed him services and understanding that PANDAS does not? b/c i know the correct diagnosis and am working with it medically, i don't so much worry about an erronous label -- should i be if they were to think it fit?
  9. norcal -- i'm not exactly sure what you're looking for and at first wasn't going to answer b/c my experience is very different b/c i have not treated with abx. i went to our integrative MD who uses a form of energy medicine and treats with homeopathy. after some time of treatment, perhaps 3 mths -- my migraines stepped up in big order and after about 4 mths, i got a small rash on my hip. it was so odd and appeared without any impetus i'm quite sure it was a bartonella rash. dr didn't actually see the rash but believes it very well could have been. it was just a very small spot and it came with no notion and left with no notion after only about a week. i think it was a different situation b/c it was more of a healing crisis rash rather than a rash that appears with infection and is then used for diagnosis, so i'm not sure what that means it terms of how long it takes to go away. why is your dr not sure about the origini of the rash? are you saying you didn't think it was bartonella b/c it faded quickly? are you questioning if it is something that could have been brought out by treatment? what's your concern -- to keep him on bart treatment or not?
  10. this is very much my own opinion -- i very much consider this a symptom of tick borne illness -- of course, could also be a symptom of other infectious disease also. our experience. . . my younger son was already diagnosed pandas. my older son, 2 summers ago after week at day camp, had green gunk in his nose -- not too bothersome, got over it. a few weeks later, went to baseball camp -- complained that the coaches hassled him too much to 'hustle" while running laps. i didn't pay too much attention. late that fall, he began with many more pandas symptoms -- wouldn't be on a separate level of the house alone, night fears, wouldn't order his own food at a restaurant. we watched and wondered. i made appt with our pandas son integrative MD. around the same time (maybe January), he began basketball -- quick running starts and stops. a few times, he appeared to be having extreme trouble catching his breath. even looked like he may pass out. went to ped. he blew something ridiculously low on the blow meter, had a worrisome pulsox. dr diagnosed "exercise induced asthma" -- gave an inhalor, made appts for chest x-ray, blood work, EKG. x-ray fine, blood work showed high strep ASO, lyme neg. EKG showed something to investigate further. did expensive doppler echo which showed minor murmur, cardiologist not worried and saw it as one seen that is not uncommon for kids. at same time, integrative MD did a type of energy testing -- diagnosed trouble with strep, lyme, i don't have in front of me but i think also erchlicia, bartonella, maybe also babesia. treated wtih homeopathy. as far as ped is concerned (and i think ped is a helpful part of our team with younger son and quite progressive -- but still a general ped) he has exercise induced asthma and should use an inhaler - likely will be life troublesome. after a few months (5-6 ish) of integrative treatment, he showed great improvement. that spring at the beginiing of baseball training, he could not keep up with the other kids running the outside of the field, even with inhaler. he told me then that at camp last summer, that he couldnt' keep up. also showed trouble relating to the coaches and kids, many of which he'd played with the last two years.. we thought we'd have to pull him from the team. luckily, we had great supportive coaches who were willing to take what he could give and saw the value of keeping him in an activity he liked and with friends. he ended the season, a full part of the team and pitched the last two winning games. he used the inhaler deffnitley the beginning of the season, likely still used but less in the end. fall baseball, didn't use the inhaler. the past winter basketball, he again seemed to have trouble and used the inhaler. with integrative MD, he was again showing trouble with a few viruses. he's young and sports are important to him, so we use the inhaler when he seems to need it. if he were older, i think it would likley be good to not use it and see the breathing as a canary for infectious trouble.
  11. thanks LLM. i think you're right, that we should not add too much but not what i want to do -- i'm anxious to get started on this!! i'm interested in your knowledge of pyroluria and what you mean when you say your son had pyroluria but not a copper issue. as we've discussed before, my ds has a pretty classic "cuprum" (copper) personality in homeopathic terms -- although that was not his classic remedy that we used in the worst of times that he saw good results from; nor did he seem to see much improvement from using cuprum as a remedy. he blood tests in the middle range for copper and low for zinc; borderline high for free copper. he tests something like 5.7 for pyroluria -- which was surprising for everyone. doc is basically thinking of him as positive for pyroluria b/c of symptoms and low zinc. your ddd is neg for pyroluria and high for copper, right? can you give me an idea of the contrast in them that you see as pyroluria vs. non-pyroluria? thanks for all your help -- your an awesome source!!! how close are you to dcmom -- maybe you two should hang out your shingle together!
  12. in my disorganized life -- i am behind and now need to decide what to do... june -- see new doc to see about addressing ds in a biochemical manner -- blood tests, other delayed due to holidays and moving. get results, ds low in zinc and copper/zinc balance too high. will address with minerals and vitamins. takes time to coordinate with doc office and pharmacy to compound. yesterday, ds got in to charter school has been wait llisted for -- great news. still expecting challenges as school phobia is one of ds's biggest issues. trouble from last year has left him (and me) with understandable PTSD. going on trip today and can't get vitamin prescription until next week. leaves about 10 days until start of school. planning to start this quite slowly. ds just came through what i think was herx related to parasite treatment. back to normal self, possibly better. should i start these supple or wait until after school begins? he's been on 15 mg of zinc for about a month. this prescrip ups to 50 but we would work up to that anyway. my biggest concern is zinc releasing copper and exacerbation of copper symptoms. however, if we did it slowly, could we contain this? we're going to have to do it during school anyway but is beginning of school too much???? will this help/hinder or if slowly, not be too noticable? should have been doing this in June/July but just didn't work out that way. what to do???
  13. to me. this likely sounds your best bet as to how to deal with this problem. i was going to try inositol for my ds b/c i had read much good about it. we see an integrative MD who does a type of energy testing. he said he thought this was troublesome for ds. now, this was a product i brought in to him, not a pure compound so could have been somehow something else -- but this doc has been right about a lot of things, so i stay away from inositol for ds. my ds was neg for MTHFR, but as i was researching, etc -- and i certainly get very confused with the whole methylation issue -- i believe i read there can be an issue for some people who have methylation issues with inositol. to me, it seems to be one of those things that is great for some people, but troublesome for others.
  14. i just had to share this as only the members here can really understand my pandas ds, 8, has many sibling issues that have ranged from what i believe to be OCD exactness that i think relates to concerns for brother's health and safety to normal 2 year younger of a same-sex pair issues. we range from addressing and working on things to letting things go that help his independence or foster his personal needs. ds has been treated for parasites before without much seeming results, good, bad or indifferent. our integrative MD has had some recent discoveries and situations with patients and has taken a re-look at some of his patients. he put ds on a new parasite remedy. after about 4-5 days, we saw a ramp up in some old troublesome behaviors and i worried ds was showing some infeciton. then i remembered he had just started this remedy. behaviors cycled and subsided in a few more days. about day 10, he was back to his normal self behaviorally. around that time, he developed a rash i worried could be anal strep. that improved with calendula and a vitamin E/tea tree oil cream. so -- today i was helping them get ready for a bike ride and filing their camelbak water bladders. ds is usually concerned about which one is whose -- only difference is a black or blue ring. we remove the mouthpiece and wash so they get mixed up anyway. i think this is a 'mine' issue anyway, not contamination. i say to him, "i can never remember, which one is yours and which one is B's?" he trots over to me, looks at them, looks at me and says, "does it matter?' i felt like a cartoon whose whole head rattles. i laughed and said, "usually to you it does." he shrugged his shoulders, said no and walked away. i've just been laughing about this the whole day. . ." DOES IT MATTER?"
  15. i'm sorry i don't have much time now. . . so sorry, i know all too well what you are describing. first,i think the medical management is the biggest issue in working with this. secondly, i think coping mechanisms for you are a high priority with a child that young. my son had 'sudden onset' at age 4.5. one of the most helpful things was the book "The Explosive Child" by Ross Greene. it wasn't so much that we learned skills for him at that time; but i learned helpful ways for me to management the irrational explosion without being dragged into it. there is quite a bit of past discussion about it if you do a search here with Explosive Child. my son also had forgetfullness of things i knew he knew -- like the order of the days of the week during exacerbation. this was much better out of exacerbation. you may want to research or investigate 'working memory' to discuss with developmental ped. my son had extreme issues with potty phobia. he is 8 niow and independent with that now -- but it was a long time coming and much systematic desensitization. we never unearthered the reason -- i'm not sure he actually knew -- i think it was an unfounded phobia -- likley there was a reason at some time, but he had forgotten it and the habit remained. i don't think it was an involved OCD, more a phobia fear. i do remember it was something like a 72 day process to getting him peeing - and likely at age 5, maybe close to 6 - ?. pooping in pull ups lasted much longer but then melted away with just doing it one day. unbelievably, as it it such an all consuming issue -- it seems such a distant memory now -- as it does with my older son who didn't have potty issues. at the time, i never thought that possible. so my point -- there's hope and that issue, too, will see resolution. it just might take more work that an average kid -- or even a troublesome potty trainer.
  16. thanks for all the thoughts!! wow mom -- 4,000. i'll pass on to my mom b/c she tests low and none of her docs seem that concerned -- they just kind of brush it off that sure, she can take D if she thinks she should. she hasn't gotten much recommnedation or concern other than to sit in the sun it's kind of odd. our docs were recommending 500 mg 2x/day for ds and he's about 55 lbs. not sure what to think about it as we are embarking on a new phase of our treatment -- i think we've got the infections under control -- we are now working to correct imbalances that either allowed or developed from those multiple infections -- specifically, low zinc and thus zinc/copper imbalance. since D was also low, docs were planning to supplement but b/c i discussed that we've possibly had a problem in the past, we've put that on the back burner until we begin the others. once we get set with that, we'll try to add D. thanks LLM for the links. not sure what to think about that in ds's case-- it definitley makes the most sense to me that infection would be the plausible reason b/c other than that, he shouldn't have a D deficiency -- of course, can also make me spin off b/c like i said, we really think we have infections under control, unless it could be result of past infection and not built back up yet --- ARRGG -- i think i'm going to put the fear of current stealth bacteria also on the back burner until we add the D and see what happens then. i could spend the whole day in circles if i let myself -- actually i think the only thing that stops me is my brain gets exhausted.
  17. is the case you are talking about the one that was featured in the Washington Post last year around Sept or Oct. I don't believe that parent is on this forum but i think i remember someone who is on lives in the same neighborhood in Virginia. have you been in touch with them? i believe they had great success with tonsillectomy. if you don't get much response, you can try searching the forum from that time and contact. good luck.
  18. very key point to emphasis -- LLM, what would we do without you??!! it's rather difficult to provide info without overwhelming. i did use the letter adapted from pandas network last year -- the conductor letter -- and i must say, i think it was the best letter i've ever written -- ha ha. i can pm to you if you like. and i provided a few other info sheets. for us, in the beginning, the staff etc, were all extremely appreciative for the info and stunned they 'had never heard of this before' -- of course, i am sure they have run into pans kids, just didn't know it and gave it another label. disclaim these next statements are negative and don't mean to be a downer but want to mention it in the spirit of helping awareness. unfortately for us, ds was in a great state of remission at the time and when his behaviors surfaced, they believed them to just be an obnoxious, indulged kid with a neurotic mother -- even with 2 diagnosis letters of anxiety - NOS and PANDAS. i tried so hard to be proactive and it backfired in my face. in retrospect, i think some of the reason was i was there and active and they took me on to function as his aide, rather than calling in the personnel that should have been doing that. i was knowledgable in something they knew nothing about, so they had a hands off attitude, until they wanted to grab control and then had no idea and the wrong personnel to be involved. the good news is that i think our experience is NOT the norm -- as even at that time, most here on the forum had much more positive experiences with schools. we are now trying 'take 2' armed with professional help to get us to who we really need to be dealing with in the school system -- of SPED and school board. we'll see how it turns out. good luck!!!
  19. i know vitamin D seems to be a 'hot' health topic -- what does anyone know about it in specific relation to pandas kids? huge thanks to vickie for the info posted on pandasnetwork.org from the OCDF convention!!! i believe i read in that that one doc says our kids levels need to be 50? is that correct? all i read says you get it from sunshine. my 8 yo has been homeschooled the past 2 years so i'd have to say he gets at least as much sunshine, if not more, than the average kid his age. his level just came back as 20. how is this possible? i'm really missing how you have a vitamin D deficiency. in the past, when i've tried to supplement him, just in thoughts of good health, i've thought i've seen activation of symptoms. of course, i'll discuss with our doc -- but just hoping to get info from the wise members here. thanks!
  20. i referred my sister to SFmom's detox drink. . . when reading it, i thought, i many years ago did a morning drink with aloe vera, so i thought i'd get some. in the past few days of drinking it, i really think i feel more energy and actually popped out of bed this morning -- which is a BIG issue for me that i never am able to do. could be a coincidence but i'm going to keep drinking it and see how it goes. was wondering about giving it to dss. i think it is fairly benign -- can be a digestive aid - so could have some negative digestive symptoms at first.
  21. FABULOUS -- especially with so many good things due for you in the future! so happy to hear it for your family!!
  22. i've posted it on here before. . . but i suggest anyone who is concerned about this brain injury/change//concern issue may benefit from reading "My Stroke of Insight" by Jill Bolte, http://mystrokeofinsight.com/. amazing story of a neuroscientist who experienced a stroke herself. a lot of it is her experience of changing from a "left brain dominated" person to a "right brainer" when those left areas were damaged. it's an adult's story and not immediately pertinent to the issues we experience and discuss but i think very valuable concepts to ponder. i had heard it recommended as a read to anyone who has a neuro issue or cares for somone with neurological issues. really interesting things to think about.
  23. was the IV rocephin lyme treatment? was she experiencing neuropsych symptoms before but not diagnosably psychotic or was this the start of everything for you? i'm assuming you are talking that this was some time ago? how is she now -- you say off abx, so i'm assuming good - ?
  24. lfran -- i find this very surprising based on our experience. our insurance told me exactly the U&C based from zip code, i think, and then told me the 70% that they would pay. i just assumed that had to if i was asking. i find it odd that they would not discuss this with you. could it have been that you were talking in services terms and they needed a code? our experience is a little different from PowPow in that the inital visit, with a different code, were charged at a higher price but covered more. so -- we i guess we must have still been paying 30%, but perhaps the U&C was higher and our therapist difference was less -- ?? i think we saw this with a few therapists -- that the initial visit cost us less.
  25. i consider my kids PANS -- multiple causes, including TBI. for ds8, diagnosed PANDAS, TBI much less of a factor. for ds10, not technically diagnosed PANS, TBI much more so. such a good statement PowPow! unfortunately, it is such a case by case basis and the science seems to leave us with having the parent be the one having to drive so much of the direction mini -- i say you have to study your test results, symptoms and treatment responses and go with your gut. good luck.
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