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Everything posted by smartyjones

  1. yes -- a number of years ago, i tried to give my ds vit d just in the thinking of increasing immune health and i believed i saw an uptick of troublesome behaviors. and i would always quit after a short time. this past summer, he tested quite low -- 20 something. we began a vitamin regime, but i left out the D because of prior trouble, i didn't want to add it with others. today, was first day. i waited until break from school just in case. we are starting very low and will increase gradually. we are starting with 200 ius. our practice that works with vitamin regimes is surprised that i say i think i saw an increase in trouble from D b/c they think they usually don't -- but most of the people that they see with chronic trouble, test with low D. i'd say try a lower dose and work up gradually.-- try a search on this forum -- there has been talk about it recently.
  2. one of ds's main presentations is anxiety. we have at various times and are again using Rescue Remedy. you can get it at whole foods or the vitamin shoppe. there are many versions - we ue the original drops in the children's version. it is the same as the adult but the adult version tastes quite a bit of alcohol. it was one of the first things i tried way back when when ds first had sudden onset and we were trying to figure things out. at that time, he had severe overreactions. he was 4.5 and did say rescue remedy did seem to help him a little. that was 4 years and many treatments ago. we are also big fans of motrin but i worry about the effects of long term use. ds is currently doing quite well although seems to have had an exacerbation beginning around halloween and pulling out of now. we just saw our integrative MD who believes a couple viruses have come back to bother him -- herpes and CMV. i should have known it -- at the time of the ramp up, his mouth was broken out but it had gotten cold so i thought chapped. hindsight is 20/20, right?! anyway - we were doing motrin in the am just because things have been going so well at school and i wanted that to continue. 2 weeks ago, i started RR in the am instead of the motrin. he says he feels good with it. don't know -- could be or could also be just b/c pulling out of it. ds10 has had some anxieties around school -- new math class, changing friends, yada yada - 5th grade. . . i was giving it to him also and he seemed to feel better going to school. so - to make a long story longer -- i think it can help with some general anxiety. i would by no means call it a heavy hitter. it's only about $10 a bottle, so easy enough to try and see if it helps take the edge off. GABA was very activating for ds8. he energy tested a while ago as troublesome for inositol - but seems okay now, but i have not tried. we have never tried SSRIs. i am huge supported of LLMs comments and she, ocdmom and meg's mom are my heros and have been invaluable supports for us in our anxiety journey -- sad so say, mostly much more so than the professional psych world. i also love anxietybc.com as a grand help for anxiety issues. Good luck!
  3. it's yum yum by jarrow - drops. i got it at whole foods but i think it's on vitacost.com also. it's a lemon flavor -- pretty strong lemony - not really a flavor, more of an essence - but strong. i'm hoping won't be problem for ds. only others i've found are 400 in one drop.
  4. what dose are you using? years ago, i believed i saw an uptick in ds when i'd give him vit D. i think i've come to realize i could have been giving him a drop that was 2,000 iu. i am going to try to start supplementing him during Christmas break -- last summer, he tested very low --somewhere around 20. i am going to start with a drop that is 200 iu and slowly move up from there. maybe you need to start with a lower dose -- ?
  5. well, yeah -- been there. i think my best advice is that as unfortunate as it is, we as the parent have to become the case manager and work to develop a team of professionals that you seek out advice and help from and formulate the best plan for your child. many of the professionals that specialize in a certain area become just that -- specialists -- and they may see things through a narrow lens. perhpas you don't see your child in that same lens. you may want to keep some of that perspective, but it doesn't need to be YOUR full perspective. early on in my son's onset, we had what increasingly became known as a useless ped practice. the previosuly trusted docs got angry with me for consulting a naturopath -- how dare i not follow them verbatim -- that attitude to me is a huge red flag. i knew it was over when she said to me, "i think you'll find the behaviors and the strep are unrelated." this was a child with 898 ASO, a positive strep culture and a flip of behaviors. our current ped is helpful as i accept him as a ped -- with limitation that come along with that -- he is respectful of my choices, willing to consult with other docs and offers me his opinion -- it's then up to me to take it or not -- sometimes i do -- other times i don't. i think he'd rightfullly become irritated if i continued to consult but didn't take his opinion -- but i don't -- i see him as our front level ped for physicals and emergencies - not management and improvement of chronic issues. this past summer, we added another doc to our team. i have a fabulous integratvie MD who has done great work in clearing infections. however, i wasn't so sure we could end there -- i thought we needed something else. the new doc works with a biochemistry slant and is balancing some levels with ds -- specifically a copper/zinc imbalance. both of those areas are over the peds expertise. we continue to see both those docs. yes, it's exhausting and unfair to have to do the level of research and managing to pull that off. and it can be confusing to all. but. . . i only have to think of some of the things that were said to me when ds first presented to know i can't put all my faith in one person or one philosophy. there is just too much about pandas that is not understood. medicine is not an exacting science and you just have to look at history to realize some of the ridiculous things we have believed.
  6. familyof5 -- some time after the birth of my second son, diagnosed pandas, i was eating quite a bit of soy. . . and i think i began having some health issues -- increase in migraines with aura, hormonal imbalances -- likely was around the time i stopped nursing him -- not too sure of timing, thyroid trouble. i think things things did mellow out some when i cut back on soy. i am not sure of when my Tick-borne illness began. i think most likely had low level as a kid and it came into troublesome after pregnancy. i think there is likely some sort of issue that soy can make exisiting health challenges - like lyme- more troublesome in sensitive individuals or in people who are experiencing a downturn in health. soy is so very prevalent in our food supply even if you are not a "soy eater". once you add soy to your diet, especially as a sub for dairy or meat, you increase your intake immensely. and there are conflicting thoughts about all the soy isolates -- that are actually very processed foods from the original soy bean. i'm not saying it's definitely the problem, just that you should be aware of the issues and thoughts of soy. if you haven't already, you can easily find info by googling 'the dark side of soy'. good luck.
  7. [quote name='minimaxwell' timestamp='1355669921' post='150970' Also DD has high copper which I have been treating with Zinc. Will ask to test zinc,copper,B6, B12,glutithione and homosytine tomorrow? Anything else I should add? while you're at it, you could ask for Vit D and thryoid. or at least, doc opinions on running them. our doc tests what you have mentioned and vit D and the nurse told me almost everyone they test (granted, they are there of chronic issues) tests low in vit D. i had asked this question in may but then we saw our doc in june and ran it through Pyroluriatesting.com and they supplied us with everything we needed.
  8. we've seen improvement in attention for both boys, ds8- diagnosed pandas, ds-10 - not 'diagnosed', but has pans - with zinc supplementation. at first, we did ds10 with zicam melts. now both take supp caps.
  9. rowing mom -- what are you doing about the A1298C mutation? thanks.
  10. are you familiar with a herx-like reaction? that is where things get worse before getting better. unfortunately, usually the only way through it, is through it. however, you don't want it to be too severe. how much vit D did you add? perhaps you could back off a little -- or give her some in the am and then some in the pm. are you working on this with a doc or doing it yourself? a few years ago, whenever i supp-ed my ds with vit D, he would seem to ramp up. i thought i was crazy, but it did seem to be a direct relationship. at that time, i was just doing it as a good idea, i didn't know he was low. he tested low in the summer but we added other supps and decided to wait on D. i am planning on adding it in a few weeks during christmas break from school. our doc had suggested 500 mg in the am and 500 in the pm. i am going to talk with them this week -- i think i'd rather start with 250 am and pm and see how that goes and move it up slowly. i don't know if a light would add enough D if she is very low -- that was still something that perplexes me about ds -- he was tested in july -- i honestly cannot imagine an average child outside more than him - unless they lived on a farm. i do sunscreen him for extended time but he also spends a bit non-sunscreened. our doc said most of the people they see that have some chronic issue test low for D.
  11. spacecoast -- do you have this? http://www.nimh.nih....broadened.shtml there are some really good quotes from Dr. Swedo in there that may help drive the point you are trying to get across. i can't really remember -- i think i highlighted or somehow pulled out a paragraph. at the time, i had found an old flowchart that listed Swedo's title at NIH -- great graphic -- but then i found out it was a couple years old and not really accurate anymore -- oops -- but it showed a great point for me -- and not really erroneous, just not fully accurate. i do agree -- you've got to get them to understand the point you are trying to make, however -- my advice would be to try to do that as briefly as possible -- hopefully, a doc letter will have them get to 'oh yes, right, he's eligible' and then get on to what he needs. i really feel i made a big mistake last year in having them see me as an expert and feeling they weren't sure of the disorder and what to do -- this year, our school has taken a different attitude in yes, they may not know of this specific disorder -- but they can see behaviors and learning issues that they have familiarity with and know what to do about. so, it's much more successful in looking at ds, his needs and how best to meet them, rather than 'wow, we've never heard of that and aren't sure what to do.'
  12. are you working with a doc that would write you a diagnosis letter for PANDAS? Not a big explanation, short and to the point? have you seen the info on pandasnetwork.org from the conference in the spring that includes some fabulous info about schools? i can't recall right now but let me know and i will send you a link -- there were info sessions from an educator specifically talking about challenges for PANDAS in school. all that said -- last year, we had a disastrous year even with a 504. i think i made the mistake of giving too much info -- they sat back and thought they knew nothing about this odd disorder and they'd let me run the show -- only it was my first year with public school. i had asked for compassion and understanding -- not to pretend there were no problems and then freak out when things didn't work out -- and things spiraled from there. however, i do believe that is the exception, not the rule -- this year, we are at a new school and they have been fabulous.
  13. megan -- i'm curious -- your ART doc tests your child as negative for mycoplasma but your other doc tests him as positive? what does he suggest for treatment? we see an integrative MD who treats with homeopathy. with onset, ds had 100% remission of symptoms in about 3 days with keflex. but. . . he relapsed after about 30 days off abx(after a 30 day course) and did not see the same result when back on. we used a strep nosode for about 18 mths. whenever we tried to wean him off, he ramped up. we recently (6-9 mths ago) tested titers and he was very low - has been off the nosode for a long time. he was around 900 with onset and was high for some time after. so i do believe it was a very effective treatment against the strep. we have also treated with homeopathy for mycoplasma and EBV but we are not checking titers for those. you say they do not see anything in the throat -- could the infection be in the sinuses? with onset, a CT showed all 6 of ds's sinus cavities infected -- no real symptoms but PANDAS. headache, vision and sore throat can all be sinus. the sore throat and gastro trouble can be from sinus drip as well.
  14. i do believe low vitamin D can cause trouble and you should be working with a doc on this. i also want to make you aware that some believe adding vit D can result in a herx-like reaction. we recently had ds tested and he was quite low -- i don't think as low as your dd, but maybe around 20. we decided to hold off b/c i have thought in the past when i have supplemented D, we have seen a ramp up in behaviors. we were adding new supps for ds, such as zinc and B6 and decided to hold off on D. we see doc again soon and will likely try to add it in now as an independent supp so we can better gauge its effect. there is someone on this forum who believes vit D has a huge effect on her dd's neurological status -- hopefully, she will weigh in or you can try a search -- there was a discussion on this about 5-6 mths ago. i think at a recent seminar, someone - perhpas Swedo - ? suggested PANDAS kids would do better with Vit D numbers close to 50.
  15. i know not so much your point, LLM, but I'm not buyin' the 'need not worry' bit. . .i don't know the answer -- i don't think it's to eat no fruits and veggies. . . but seriously -- one serving of cabbage = 1 million viruses!!!!! perhaps that particular one may not be troublesome to humans. . . but just goes to show -- what else may be in that serving of cabbage. . . and who's to say in x number of years, we won't realize baculoviruses actually do cause trouble, even if to only a certain population like those with compromised immune systems or other infections. i'm thinking more of the person who recently wrote that she regularly de-worms her animals, why isn't she doing that for her kids also. ... sounds crazy but actually makes sense to me!! Such is the case with the baculovirus, a virus sprinkled liberally on leaves in forests and gardens. (The cabbage in a serving of coleslaw carries 100 million baculoviruses.) Human diners need not worry, because the virus is harmful only to caterpillars of insect species, like gypsy moths.
  16. mama -- i don't want to freak you out. . . but if you are wondering if you should be worried. . . i think you should be. weight issues can turn very serious, very quickly. we had a bit of a different situation with restrictive eating due to a herx-like reaction to an antiviral. ds was slight to begin with and a couple of pounds represented a large percentage of his body weight. ds only had about 7-10 days of this and then slowly got back on track. i recently looked at some pictures from about after a month of more regular eating from him. he still looked dangerously emaciated -- i was stunned at seeing them. it's hard some times when you are in the thick of it. i'd definitely suggest consulting with your docs -- if only to be on the safe side. it really is amazing how quickly things turn. good luck!
  17. i know a week is the max you should give motrin -- i know there was recently some advice from dr t that longer is okay but needing to have a doc know it -- i assume that is at full strength max times a day -- right? is that the same advice for a once a day dose -- one dose/24 hrs? if i am seeing improvement with a one dose/24 hours, do you think it could be due to the motrin or do you think it is just improvement b/c at some point, the effects of the motrin should wear off, right -- and i should see backslide after 6, 8 or 10 hours, right? i'm planning to not give this weekend and see how he seems. if exposure = inflammation and motrin quells inflammation -- would a week be long enough to fend it off inflammation and get back to baseline? i guess it depends on the amount of inflammation - ?
  18. i'd say our exacerbations are varied but getting shorter as health improves. ds reached a very good point in health about 1.5 years ago. i'd say maybe 90-95% -- leaving us with a muddled mix of what could be symptoms, what could be learned (or nonlearned proper) behaviors b/c he had onset at age 4.5, and what may just be 'him'. he had 2 exacerbations last year -- one due to extreme stress at school (I'm talking extreme -- which also left me with PTSD) -- that lasted maybe 2 -2.5 months. in the spring, he had exacerbation after an allergic reaction to sunscreen. that lasted 4-6 weeks. he's had a ramp-up recently that i am not sure -- could be halloween sugar overload-yeast, some type of exposure from school, reaction to slight cold he had -- ???. he seems to be pulling out of that after about 4 weeks. we were seeing improvement from balancing copper-zinc levels but that didn't seem to help ward off this ramp up. or maybe it has a hand in the ramp up. so many variables!!! i'd like to try living in a vacuum to get some definitive answers! although we have various causes, we seem to run in a 6mth cycle of ramp up. not sure if varying times is due to improved health in general or due to differences of causes of exacerbation. we usually do see help from motrin during ramp-ups. we've not done steroids. still looking for a long-term use ant-inflammatory. i'm interested in enhansa but haven't tried yet.
  19. yes, you can see a very quick response AND yes, it is not that easy. my ds had 100% remission in about 3 days when he got on the right abx. at that time, he had a 30 day course and he backslide after about 30 days off abx. this was 3.5 years ago, i didn't know much about pandas, i didn't know this forum, yada yada yada on what i didn't know. i actually thought he was cured! and i would advise therapy is a good idea -- for exactly the reason you state. it does seem to be difficult for a child in an exaceration to focus and work with therapy -- but there are different stages of exacerbation and some things that 'stick' even when much healthier. and that's coming from me who has been very jaded with the psych profession from unfortunately seeing some unhelpful psychs. there are some good ones out there -- it just seems to be like finding a needle in a haystack. we have some strageties that we don't use often but when he flares, they come in handy for everyone. my advice would be to continue the abx until you have a good solid plan from a doc who KNOWS pandas -- even if you see wonderful improvement and a doc that isn't so knowledgable suggests cutting abx.
  20. Minette - sorry, i don't have much time. your info about diagnosing and treating without multiple episodes is not correct. are you aware of the clinical trial at NIMH? i believe they are actually looking for cases with onset within 6 mths. http://clinicaltrials.gov/ct2/show/NCT01281969 good luck!
  21. does the blood work script include both ASO and anti-dnase B? i believe it should. our first blood work was only ASO, i didn't know at the time --i'd recommend both.
  22. i don't know -- you might want to contact LLM -- she's the resident expert who seems to know all this sort of stuff. sorry we can't be there the same way for you -- perhaps a pina colada - ?!
  23. sorry mama -- i have no answers for you, just a question. my sister is being treated for lyme etc with abx. her doc ran this test and said she had some of the worst results she's seen. (i believe my sister had pandas as a kid - just not to the level most of our kids experience today). i am frustrated b/c the doc just tells her all the things she needs to avoid b/c she is supersensitive -- which she knew in the first place from experience - and can't seem to be able to tell her anything to DO about it. please let me know anything you find out about what to DO with results from this test. thanks and good luck finding info.
  24. my ds did have severe noise sensory issues during the height of exacerbation. a lot of his other isses that could seem sensory,but i believe were more likely 'just right' OCD. i read the out f sync child, and while i found it fascinating - reading it made me feel sensory integration disorder wasn't really his issue. i felt the same after reading when the brain can't hear - about auditory processing disorder. i'm sure there are a few other books that i had similar experiences with -- of course, becasue he doesn't have these disorders -- he has bits and pieces of them b/c he has PANDAS, so while there may have been some good suggestions, etc - i think they left me still in a state of looking for answers. of course, i don't put my beloved explosvie child in this category -- that is definitely my number one suggestion for dealing with a difficult behaviors in a kid -- but, not to provide solutions for the kid, to provide solutions for the adult on better ways to interact with the kid. one book that really did resonate with good practical strategies that DID help when we put them in place was http://www.whenthela...te/Welcome.html.
  25. kleek -- i am happy you were able to reach dr t and i am not posting to say in opposition to his advice, OF COURSE. just wanted to mention that for my ds, i absolutely hate zith and cannot imagine any situation i will ever have him take it. it was the first abx he was prescribed and he had a terrible time with it. some behaviors that had left returned with a vengenance. it was rxed by our useless ped at the time and for 5 days. i was so very happy when that 5 days was over. he then returned to his level of before the zith. about a month or so later, when we switched peds, he was put on kelfex and had 100% remission in about 3 days. at the time,i thought it was just that different abxs work differently for different kids. later, we discovered lyme. i do believe zith can cause a herx reaction for some lyme patients. we will never know what the exact situation was. just wanted to mention b/c i think you said you think the zith has never had a positive effect for your son. good luck!!
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