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Everything posted by smartyjones

  1. peg -- a couple of years ago -- perhaps 2 - ds had a stomach bug a day or so before Christmas -- it was crazy -- i seem to recall he had no symptoms for a couple of days or so. i do remember positng about it -- if you want, i can try to find it to see what people had to say at the time.
  2. sorry still -- i don't want to derail your post, Mom is just so knowledgable!!! Mom -- a year or so ago, i think largely due to your promotion, i was investigating inositol or NAC for ds. we see an integrative MD who does a type of energetic testing -- he thought both were not good options for ds. so i didn't try them. late summer, ds started a new protocol with another integrative MD using vitamins and minerals. he suggested GABA for times of high stress, either taken at those times or taken regularly. ds son showed extreme activation from this at only 1/2 dose suggested. we did 2x and decided didn't need to try for 3rd to confirm. at appt with other doc, energy testing showed extreme no go for ds for GABA. so - i'm interested if you have any thoughts you can read into this based on what you mention above. he does not take others that you mention - so i'm thinking this is his either neuortransmitter make-up or off balance. what do you mean by 'etc'. do you have studies or papers that discuss this? would we assume ds has excess dopamine and/or serotonin? i began taking the GABA and was feeling good results from it -- at 250 mg. i recently got a new one at 500(original dose for ds) and have only taken it once but the afternoon i took it, i felt quite irritable. havnen't tried again.
  3. yes, for us. i would agree with momOCD that it was likely anxiety. what she says about the BBB is very interesting b/c there was a time when i was not giving ds motirn regularly, but i would give him a dose before an event i thought could be overwhelming. i can't so much remember, but i do think i did this for a while. i think i stopped doing it when i thought he was in a helalthier state in general and he seemed to do well at the events.
  4. oh tpotter -- once again, i have spouted off of things i am not really qualifed to intelligently discuss . actually, how do general parasite meds work -- do they work to kill the parasites directly? our doc believes all pathogens get to the brain -- parasites, bacteria and viruses and part of the problem is the actual action of the pathogen on the brain tissue -- how, i don't know -- does it disturb tissue function, eat away tissue, interrupt action -- ?? idk. i think he thinks a large number of parasites are ingested and then after reproducing are carried to the brain via the blood. he treats mainly with homeopathy to engage the immune system to eradicate them or at least bring it to a symbiotic level of a relationship. so it's not so much a matter of getting into the brain to attack but helping the body to do it. again - how -- i don't know. trouble being -- how to prove or disprove other than autopsy or biopsy of brain surgery. i do know there are cases of brain autopsy showing borrelia spirochete in the brain. he claims he has seen good results with lyme patients who have been on abx for a long time without good results and he believes it is due to that the meds they were using aren't getting to the brain infection properly. i know it sounds iffy, but to me -- there is much talk of 'evidence-based medicine' which in our experience is a crock -- traditional med would have had my 10 yo on an inhaler for life for exercise induced asthma that our doc treated with remedies for TBI. he is currently on a remedy for a bacteria the doc thought was in his brain due to a soft hum tic and it has subsided in 3 weeks. i'm quite sure traditional med would have blown off as 'transient tic'. one of ds8's many infections is toxo gondii -- which i have only heard dr T discuss - there is actually quite a bit of medical knowledge of. doc believed that was recently causing of ds's strong increase in motion - swinging, hanging, twirling -- that has greatly reduced in about 4-6 weeks of treatment. SFmom -- what are your thoughts about pathogens actually in the brain?
  5. i know you're asking about pandas symptoms -- but if you're still having trouble with cough - i have found raw honey to be more effective than anything else.
  6. ds is not longer on restrictive diet -- previous strict gluten free, dairy free to relaxed GF/DF -- now free for all but fairly healthy. the latter part of this week, i've seen an uptick in quick frustration and school work irritation. also quick frustration with brother. his candy eating has mellowed out now, but wondering if big influx over a few days last week could have thrown his system into yeast imbalance. a normally healthy person should be able to process something like that but although ds is doing well, i wouldn't doubt his system could be thrown. started increase in probiotic tonight. thoughts please!
  7. we see an integrative MD who uses a form of energy testing. when we first went, he treated us all for parasites. ds, diagnosed pandas, had trouble with toxoplasma gondii -- there is much medical research linking mental issue, specifically schizophrenia to toxo. during late summer, at appt, doc put on parasite remedy. ds had herx-like reaction, not too bad. after that, was more involved and social with certain activities that he was more of a loner at -- like mini golf. recently, after 2 yrs treatment and my thinking ds is doing well with infections, he was very active -- constant movement, swinging, twirling, swinging shade pulls, hanging on pantry doors. at appt, doc said he believed toxo was back, which he did find to be odd. that is the parasite in cat feces that pregnant women are warned about. we do not have cats, but do have neighborhood cats that wander -- could pick it up from the dirt --??? with treatment -- a month or 6 weeks now - movement has much mellowed. i have trouble with migraines with aura. doc believes related to TBI. went away with bart treatment. came back and couldn't seem to get rid of. he thought related to parasite issues. has improved with treatment. oddly, i've been getting random one or two hive like itchy bumps that last a few days and leave. intensity and frequency of migraines has greatly reduced. it is a really gross issue but those in the know of parasites believe them to be very prevalent. our doc told me to never eat salad out -- only at home and wash it really well. i have to ask further if he believes with all fruits and veggies and if those veggie washes would be helpful. he thinks traditional med doesn't do much with it, not so much b/c they don't know or believe it, but they don't really know what to do -- specifically for parasites in the brain. momcap - you bring up a very interesting point about regular de-worming. if we do that with pets and livestock, why don't we do it for ourselves? juliafaith -- interesting you say about immune system keeping at bay. i think that is a big issue. ds will likely go to a weekly prophylactic for toxo since it's been a problem twice.
  8. Shiela -- a million thank yous for this timely post and a million more to Dr. Leckman as well. I have been working to arrange my thoughts for ds's IEP next week. He is doing very well in light of our extreme school troubles of the last year especially and previous troubles. We are extremely fortunate to finally have a wonderful staff who just completed a very accurate eval -- i couldn't have asked for more. However, i have been thinking of just how I impart the importance of noticing and immediately notifying me of issues that could be PANDAS behaviors beginning an exacerbation. It's stunning how this absolutely perfect scale came along at just the exact moment for us. THANK YOU.
  9. what company strep nosode are you looking at? ds was on PleoSanum for a while after first diagnosed and another product that i consider a nosode that i believed combated his strep issues. after onset and initial diagnosis and misstep of abx, he had 100% remission in about 3 days on keflex. but couldn't hold it after he got off the abx. he went back on but not to the same miraculous results, so we went searching for other options. pleo likely for 9 months-ish -- saw some results but not full remission. we switched products b/c we switched docs to something similar but not that company but that i would still consider a strep nosode. for a long time -- i'd have to look it up -- perhpas 18 months -- whenever we tried to wean him off, he'd have increase in symptoms. then we left him on for an extended time and then with a final try at weaning (like i said, i think 18 mths) he did okay when we weaned him off. he has not had trouble with strep since -- maybe2 years. recent aso and anti-dnase b were very low. i think if he tested for strep again, i'd first put him on that same product to combat.
  10. i do appreciate hearing the stories from those that get the flu shot with no discernible troubles - i just like to add to my pool of knowledge. i do not get flu shots for myself or my kids. i pull both my boys from school the days they do the live flu mist. this year, 3 kids vomited 2 days after flu mist day in my older ds's class -- i don't know if they had the mist or not. my ds8, diagnosed pandas, vomited and was upticking in behavior the saturday after (day 4 after returning to school after the day). luckily the next day, he was back to normal. could all be coincidental -- just interesting. i did hear today and had to roll my eyes how a major city near me had grand success with their 'drive thru flu shot program'. i just thought that has got to be screwy!
  11. jph -- yes, i know the out of control breakdown all too well. a while ago, i read a book that had some advice i really liked -- get a notebook and on the right side, write down all your goals to accomplish for the day -- the real, live things you can reasonably accomplish and that is your to do list. on the left side, write down the things you need 'help' with -- be it from what ever you see as your higher power or source or whatever -- that is what you need help with. go about your day crossing off what you can and will get done from the right side, leave the others -- you are asking for help with them. (i did this a few months ago with an 'answer' for ds's school situation and within a few days, a 'spot' at the charter school i had been hoping for came available for him and it's been a great situation the past few months. -- i'm not explaining it so eloquently -- if you're interested, i can see if i can find the book to reference. in our journey - we have done some of the techniques you are discussing. first, i am a strong believer in getting at the infections. we've done gf/cf with good times and exacerbations while strictly on the diet. he is not currently on it. i think he needed it at the time of onset b/c his system was so askew, but i don't think it was a key in and of itself for his healing. we've done cranial sacral therapy -- i think we saw some benefits but not a key -- something i may like to go back to. we currently see an integrative MD who uses homeopathy to treat infection -- and he discovered many for ds -- i think this has been key. we recently added another MD - kind of sort of like a DAN who is working on balancing some aspects for ds -- his copper/zinc is out of whack -- i think this has also been important. so is your current decision between the chiro and dr K? i think my first questions are 1 - what and why are you thinking infections and 2 - are you feeling you need to ferret out various infections and specifically treat or are you interested in immune modulating techniques.
  12. i have recently found GABA to be helpful in stressful times. some people need to take it daily and some can take it at times of stress. i found it a pretty quick help. however, for some, like ds, it can have the reverse effect and be negatively activating. i am a huge fan of Dr.Ross Green of The Explosive Child. he has a technique of repeating what the person says as "the empathy step". i have found this helpful as a technique to better working with ds. however, i find the greatest benefit is for me -- to help me not get dragged into the tantrum or problem. it allows me to have that sometimes necessary distance in a way i can't seem to get otherwise. it's kind of that necessary detachment when you have to be involved but just don't feel like it. and it can be a way to allow you to do something rather than yell or when holding your tongue isn't so much working. can you try to find the humor or irony in things? a coupld of years ago, ds yelled at me, "I hate you". i just looked at him and said calmly, "really? well pal, i am you best friend!". it then became kind of this funny mantra for me and at times when i would be extremely frustrated, it would just kind of make me laugh.really -- the nerve -- all i'm doing for him and he hates me?! it couldn't be anything other than comical!
  13. yes, you should live instead of exist and that is NOT being selfish.
  14. does she have any history of migraine headaches? i began getting migraines with aura as a teenager. they went away aound age 19 and came back after i had kids. my integrative MD believes them to be TBI related. when i was first treated for bart, they increased to a horrible level before going away. all of those you list can be symptoms of migraines -- the pain in the leg could be - but the swelling not so much. however, i often had legs falling asleep as a symtpoms. during that rough time, i once was having a migraine in my sleep and got up b/c my son was calling in the middle of the night. i didn't realize and my leg went out from under me. i then had knee pain for at least a month --b/c i twisted it when i shouldn't have walked on it b/c it was neurologically 'asleep' -- could she have doen something like that if she was having a neuro issue and walked on the leg?i know -- a bit complicated . . . but just wanted to mention all those can be migraine symptoms but not so much the swelling.
  15. my greatest advice to you is 1 -- follow your gut and your thoughts as her mother and 2 -- get a big binder and a copy of ALL blood tests run - each and every one and yes, it sounds pretty classic pandas or at least infection/illness induced to me. not to offend you, but that ped makes me mad!! at onset, our ped, said, "i think you'll find the behaviors and the strep are not related." he had sky high titers, a positive culture and sudden onset of behaviors. how could it NOT be related??!! my ds does not have 'typical OCD' -- he was 4.5 at onset and had behaviors like you are describing. i now see anxiety and OCD on a continuum (i'm a terrible speller) and he certainly does live more down on the anxiety side -- however, in exacerbation, he slides down the range and i think a lot of upsets are 'just right' OCD that is not just right. and many things that involve brother -- what he did, what he said, how he moved, not eating until they take a bite at the same time. at first, we did not understand what was really setting it off -- it just seemed like wild fits -- however, it had a trigger and it was often something to do with brother not being or doing 'just right'.
  16. i think in some of the more complicated cases with multiple causes, viruses can be a serious player -- HHV6, cytomegalovirus.i think at one of the past conferences, someone reported the role of viruses was discussed a bit.
  17. i would definitely say let Dr. T know about the troublesome behavior with zith. can't really tell you any reasons why - but we had a horrible experience with azith in the beginning. ds had high titers and a positive culture and was put on 5 days of azith. it was horrible!!! we had also seen a naturopathic doc and had seen some improvements in behaviors. with the beginning of azith -- ALL troublesome behaviors came back with a vengenance. it was terrible. i was so happy to get off those 5 days. he improved once off. likely back to the level he'd been before azith -- simply meaning not horrendous but still very troublesome. at that time, i didn't know this website, didn't know of pandas docs -- (it's actually amazing how things have come in 4 years) -- anyway -- we switched peds and new ped put him on keflex. he had 100% remission in about 3 days. at that time, we thought we were only dealing with strep. when he couldn't hold remission once off abx, we went on to find multiple infecitons -- myco, lyme and viruses. my thought is that they were all straws on the camel's back with strep being the one that broke it. maybe the keflex was able to take away the strep and carefully place all the straws back - but they couldn't last. i have heard azith can cause a herx reaction in lyme patients. i don't know if that is why he had such trouble with it. i think for my ds, lyme has been the least of his troubles -- it's there to add to the load, but not seeming to cause the visible troubles -- could have had it congenitally. at the time, i simply thought he had a bad reaction with azith -- which could be -- he's had rash reactions to abx before. i'll likely never have him on azith again to find out. i would think there could be another abx to try to rid the myco and see if a better reaction. i say, definitely check in with Dr. T.
  18. did you check for mycoplasma? from your post, the "terrible sounding cough" at the time of onset seems very suspect to me! not sure where you live, but i do think i remember hearing of many cases in late summer/early fall. we see an integrative MD who tests energetically. in july, on a trip, ds10 developed a bark he couldn't seem to kick. doc believes myco to be at the root. i am a huge fan and promoter of Explosive Child. I know you say it does not fit 100% and i certainly encourage you to continue searching for root causes, if you feel they are there. i also encourage you to continue using techniques from Explosive Child. When we were in the thick of things, my mom was discussing it with a friend who started using techniques on her difficult husband with great success! i did beieve i would see it with my ds and i know it has been discussed on this forum -- that hunger and longer stretches of non-eating can aggravate things. perhpas make sure he has small snacks through the day and see if that helps.
  19. i agree with helping him feel calm and in control. . . i fear allowing the anxiety to take control and holy moly, anxiety is a 'give an inch, take 10,000 miles' disorder! we have experienced much school phobia and refusal. he was homebound for 7 months last year. this year, pound on wood, is doing well. can you set up a situation that he is able to choose particulars - like where and when - he will do the school work, but not the actual if? my ds's anxiety is strong fight or flight and very much looks like absolute defiance. i try to remember and try to beat it into other's heads, it must be us AND him AGAINST the anxiety, not us against him. . . but we do need to fight the anxiety and not let it take over. i tried to send you a PM but wasn't able. let me know if you want me to.
  20. Sorry to hear you are feeling not on a healing path – it is truly frustrating to feel you have tried so much and are still not seeing improvements you expect should be there. Also sorry to add to your list but just thought I'd chime in with our experiences – ds had clear strep markers with onset. When we first started seeing integrative MD that we are still with, he had multiple issues in addition to strep – lyme (althoughI feel that was in the background – definitely added to the overflow of the bucket but not really a major trouble in and of itself), parasites and multiple viruses. I feel viruses were a HUGE issue for us. My ds does have hyper tendencies and difficulty focusing that is pretty under control when healthy but can fly off the chart when in exacerbation. At his last appt, a parasitic infection (toxoplasma Gondi) was showing back(doc found it odd to be back) and he had been very 'spinning' and constant movement. That has improved with treatment. After 2 years of homeopathic treatments, he was generally looking quite good with infections. However,still not where I thought he should be. We went on to investigate KPU and zinc/copper issues. I have long known he has a 'copperpersonality'. He tests negative with KPU (surprising to everyone and will warrant further investigation in the future) but has low normal zinc and normal copper – which leads to an inappropriate copper/zinc ratio. We've just recently gotten to full dose supplementation after a very slow build up of 2 months but I do think I see improvement. Needs more time so the jury is still out if this is our magic last bullet. I don't really understand the over/under methylation issues(ds tests without a problem) but I am reading William Walsh's book and he believes it to be a very big issue with brain function. Just MHO – and due to our experience - when you say "I'm not sure it's pandas anymore b/c have tried everything and gotten nowhere" – I think some can have one or multiple "pandas treatments" and have good results (disclaimer that we have not had IVIG or PEX or even long term abx) and then there are those that are tougher cases that maybe have multiple issues or the infections have created other issues in thebody – like infection induced imbalances, or one infection has opened up the body to more or imbalances that may no longer respond to abx or treatments and need another approach. I know it is extremely frustrating to keep chasing new thoughts and peeling yet another layer of the onion – I just don't know that for us, I see much promise in the other options - so I keep looking for things that make sense to me. I mean for our particular situation -- i definitely think for some, psych meds are helpful and i support people using them if they find them helpful. When ds first got sick, we had a food allergy panel that had severe igg reaction to over 15 foods. We went GF/DF. He had exacerbations and good times while following that diet strictly. After a while, we relaxed it and saw no differences. Since this summer, he has not been on it at all. I absolutely believe for some, it is a help. For us, I think it was helpful at his sickest time b/c it was a lightening while his system was in such a state of disarray and thus a help in that manner but I don't think it was a major factor of itself in his healing. Does Dr.B do anything with viruses, KPU, zinc or copper? I wish you much hope in finding something to bring you success and peace!
  21. we have been fortunate to finally have found 2 great therapists in the past year that have been very helpful to us. 2 b/c one really gives me suggestions on working with ds and the other actually works with him and helps us with school issues. . . but not really in ERP. i have to say,the best i have found is online from anxietybc.com. you would use it to guide you designing your own program - but i'd have to think you know more than most that you are going to run into and you, or someone other than the therapist, would likely be working the meat of the ERP with him as homework anyway. sorry - do i sound a little jaded? other than these 2 needles in a haystack, i don't have much faith in the profession. i'm pretty sure some, like dcmom, think intense like USF is the way to go.
  22. i also began wondering about this a year or so ago when people began posting. my ds did show some symptoms but i didn't feel it was a slam -dunk b/c he is more of a copper personality - so i also wondered about the zinc/copper issue also. these issues can get complicated b/c there is a lot about balance and what keeps what in line in a type of yin-yang relationship. i asked our integrative MD who does great work with infecitons. he wasn't concerned b/c he is of the mind that the infection causes the trouble -- clear the infection, you should clear the trouble. (not that simple - he's more in tune than that but with vitamin/mineral imbalance - tends to think along those lines) nice theory -- but. . . ds was doing great cleaing infection - was still having trouble i didn't think he should be having. he had 2 exacerbations last year -- one due to stress, the other due to allergic reaction to sunscreen. so -- back on the trail. however, i was concerned that i needed someone to guide this that really understood and knew what they were doing with these zinc/copper/B6/pyroluria issues. i agree with LLM's comments about blood testing for minerals. ds does test with low normal zinc, normal copper -- but with an inappropriate copper/zinc balance. surprising to everyone, he urine tests in normal range for pyroluria -- meaning negative for it. docs do think this is a little bizarre. however, his treatment would be about the same b/c we are supplementing zinc and other vitamins/minerals - so basically about the same as if he had tested high. we'll have to rethink this after some treatment and see if he really is not pyroluric and it is zinc/copper issue or if really excretes too much zinc/B6 for guidance of future treatments -- but now is basically same. we have titrated up very slowly b/c of school starting -- ds is not at full dose yet -- but i do think i see improvements in temperment, frustration, affection - generally more easy-going. bottom line -- i had considered if i was going to try to do this myself -- b/c seems easy enough to see an imbalance and supplement but for me, i really knew i wanted someone to guide it.
  23. i know you are asking for serious help, i just love this story. . . a kid runs into the house and asks, "mom, where did i come from?" the mom, having known and worried she was soon going to have to pony up with the real facts, launches into a detailed discussion of facts,figures and details of it all. at the end, she says, "is there anything you like to ask or say?" and the kid says, "that's all great, mom, but the new kids down the street are from Pittsburgh, where did i come from?" we, like arial, although my kids are older than hers, 8 and 10, keep things pretty simple and let them guide.. we keep the main focus on the people who are 'helping' us. . . Mr. L helps us with school b/c school was it was difficult and we were having trouble with people who didn't understand why it was hard. Dr. S helps us b/c our bodies had infections that we needed medicine to help get healthy. my kids are really not so interested in the details. your's may be and then, of course, you'd want different advice. . . but i'd first be sure he's not just asking if he's from Pittsburgh. as far as the symptoms, are you familair with the What to Do books? "what to do when your brain gets stuck"'; there are others for anxiety and anger also -- i can't remember the names right now. Our psych once showed ds, at time 7, a little blue brain and talked to him about his amygdala -- he loved it. we found a silly picture of "amygdala" guy and that we need to work to keep amygdala guy from freaking out. i'm not so good at explaining, but it's a really good thing for him -- he works to keep amygdala guy calm rather than him being "bad" or using bad behavior. i'm a huge fan of Dr. Ross Green and The Explosive Child book and the technique of repeating what the child said with a "really?" or "oh yeah" or "oh. why?" to help garner info as to what they are asking or trying to communicate.
  24. the facts that you discuss her only make me think it is pandas. . my ds has factors of lots of 'labels' but not enough to be diagnosed with them. . . thankfully. the savvy behavioral ped we first saw was evaluating him on her mental checklist. .. . behaviors seem like asperger -- nope this appt is totally NOT asperger-like; coudl be hearing/auditory -- nope, just proved that wrong; etc. . then, what you describe sounds like OCD, but he's awfully young -- there's something called PANDAS. this doc reminds me of something a Lyme doc said at a conference. . . 'okay, you're saying it's not Lyme -- then figure out WHAT it is and help thse people!" i apologize if i'm wrong, but it sounds a bit like the doc is trying to lay blame on you. he agrees she's delayed and things is quite different than what he usually sees -- what is he suggesting? public school and vaccs? when i hear things like that, i just have to think. . . if only it were that easy! i know you mention you homeschool but does the school system have any type of help to offer -- through ChildFind or something that coudl help without you being in the system? We had ds eval-ed by them when he was in private kindergarten. It wasn't a helpful eval b/c he met all levels he needed to -- but if she is delayed for age, they may be able to help. just an idea.
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