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Everything posted by smartyjones

  1. have you tried epsom salt bath? my kids do seem to relax and fall off to sleep better after that. you go through it fast though - we only do about 1/2c to 1c a bath - i most recommended 2 cups.
  2. sww817 - do you know why Dr. L believes it is in his gut?
  3. i've seen on here a few times people believe there is a connection with the chicken pox vacc. does anyone have studies or is it an anecdotal thought? when i got my son's records from the ped, there was a note that i had called after his first chicken pox vacc to discuss i thought he might be having a reaction. this was 4 years ago. my husband and i had completely forgotten until we saw the note. last year, when pandas surfaced, he had a terrible mouth rash. looking at pics, it doesn't look like impetigo - more like herpes. no drs at the time were concerned about it. nothing seemed to help. i definitely believe it's related. this year, he was up for a 2nd chicken pox vacc which i refused. i am curious about this connection and possible herpes/strep/pandas connections.
  4. my son has been taking kidscalm for about a month. he does a potty delay thing so i like it b/c it seems to help keep him 'regular'. i haven't noticed a difference in any calming effects.
  5. happy to hear things went well. thanks for all that info on the specifics! please keep us posted on the progress. don't forget to treat yourself for PTSD while taking care of your daughter too! it's been an ordeal for you as well!
  6. But this morning has looked like a scene from the exorcist at our house. No joke. when i was first discovering pandas, a friend of mine who has a Phd in psych didn't know much about it but said she'd heard of it. said she remembered going to a conference that described historical figures in terms of mental illnesses. she thought there was talk of pandas describing saints.
  7. i think the yeast issue is tough. many of my sons pandas presenting behaviors were yeast behaviors. i think there is definitely some relationship - although i can't seem to understand it. my thought is that the strep infiltrates the gut which causes an imbalance and the yeast takes the opportunity to further the imbalance. my son is on quite a restrictive diet - no dairy, gluten or eggs. we don't restrict sugar - other than what comes naturally to not eating these other items. this summer, we liked to go to Rita's Ice - he can have the italian ice but it is quite high in sugar. in the spring/early summer - i did seem to think he got a bit wild before we'd even left the shop after eating it. he didn't seem to do this with other sugar like muffins or cookies - or even candy. maybe it's a more concentrated sugar hit if it's ice cream/ice - ?. i was just looking back at posts from Dr. McCandless on this forum - they're old - '03 i think. at that time, she was recommending Aqua Flora. it's a homeopathic product that is similar in theory and ingredients to how we are treating my son's pandas (although we're not using the candida product). does anyone have experience with this? one thing i remember reading when i was trying to research yeast - it's so extensive, it's difficult - was that it's really not the yeast that is the issue. it's the imbalance and the fact that the immune system is not able to keep it in check. we spend so much time trying to eradicate the strep and eradicate the yeast - i really do believe it needs to be the balance that's important. coco - i have not used oregano oil although have thought about it. my understanding was to not use if for more than a few days at a time?
  8. hi Judy. chewing on shirts is also listed as a yeast behavior. most of my son's behavior were what many consider how yeast presents in autistic kids. in fact, that's what i was investigating when we discovered it was pandas. i'm not sure how - but i think somehow yeast and strep are linked even without yeast developing from abx b/c he hadn't been on abx for about 2.5 years when all this surfaced. my theory is that the strep is in the gut and that dysbiosis allows/causes yeast overgrowth. the wet shirts are ridiculous! my son would have a completely wet shirt - at times, we would just tell him to wear no shirt. he just couldn't seem to stop. last week, he was wearing a half-zip fleece and kind of chewing on the zipper. i think it was b/c it was close to his mouth. i haven't seen it again. i hate that stomach-drop when you see a previous behavior that's been gone! i believe someone also posted about how her daughter had pandas but not confirmed strep, but confirmed herpes - i think. it's all related somehow. my son's mouth rash didn't really look like impetigo, more like mild but spreading herpes. nothing topical seemed to help. it didn't seem to bother him except that he was chewing on shirts so maybe he did feel something.
  9. funny that this dental issue comes up today b/c someone just mentioned to me the issue of mercury in dental fillings. i am not sure what exactly that is - if it's the newer amalgam type fillings or something older? i was putting it on my list of things to research in my spare time - ! i am fortunate that neither of my boys has had cavities yet. although my cousin has never had a cavity in her life so maybe they got her teeth. the person who mentioned it said the mercury must be treated as a toxic material before they put it in your mouth and when people have them removed, it must be disposed of as a toxic material. does anyone have info on that? my pandas son was on keflex 30 days in february, then again 30 days in april/may. over the summer, i noticed his two front teeth had a brownish stain on them. the dentist got it off at his appt in sept. she said a short course of abx wouldn't cause it, but 2 30-day courses could have. we have been using the Biotene toothpaste b/c some think it helps with bacteria in the mouth so i thought it couldn't hurt. been thinking of trying the mouthwash too.
  10. my son is doing cranio-sacral therapy. when i was searching for the homeopathic protocol we are using that i saw mentioned on this forum, i contacted that company. the person they referred me to was traditionally trained in physical therapy, has an ND degree and does CST. he suggessted we do CST also. i believe it to be a help. unfortunately, he is not going as often as i'd like b/c we pay out of pocket. he goes about 1x/month - i'd like 1x/week or once every 2 weeks. if you're interested, i can elaborate on how i think it helps. as with anything - the person and training are important. our dr was trained with the Upledger Institute - i believe in FL. http://upledger.com/content.asp?id=61 interestingly, i was checking out how this forum exists - and John Upledger is on the advisory board.
  11. okay - sorry - i do realize i shouldn't really be posting on these technical issues but sometimes can't help myself - i can't really wrap my brain around the BBB - what is it? membranes, fluid, nerve tissue, some other tissue?
  12. wow - that was my son's dnase # in june -- along with a falling ASO of 486. ASO fell from 598 in april, 898 in dec. anti-dnase was 480 in april. (anti-dnase was done at different labs so i thought that might account for difference) he is doing very well behavior wise - which was main presentation of pandas. ped was happy to see ASO falling but did agree it was still high. is this something i should be concerned about? i'd appreciate any thoughts/advice.
  13. The pediatric psych that we saw said, "Absolutely, you can just have obsessive thoughts that don't lead to compulsions." can you have compulsions that don't have connection to obsessive thoughts that is OCD or is that just compulsive/impulsive behavior?
  14. when my son had first pandas episode, he had a terrible mouth rash. our useless ped at the time suggested steroid cream - totally not seeing connection or looking for root cause. it was not impetigo like, but as i now look at pics, possibly mild herpes. he was also doing much shirt chewing at the time so everyone would write it off as a by-product of that but i didn't think it was. it would flair and go down. one time he had it running up to his nose when he didn't have a runny nose. 2nd pandas episode, he had a runny nose and a red line under his bottom lip a week before behaviors surfaced. he is on a homeopathic treatment now and when we've added a new element, i've seen a mild face rash flair - around his mouth and often on his cheeks also. i don't know what it all means but believe it is definitely related.
  15. t mom - we didn't actually go to see Singer. another dr at JHU suggested we should see him - it was a bit odd b/c he said he believed my son should see a neurologist and referred us to Singer with some words like "pandas has been a pet project of his" and definitely gave us the feeling that he felt Singer would be able to help us. when i researched him, it did not appear that he would be helpful. that's when i first started posting here and got more info on him. i spoke with his asst - who told me on the phone that "he does see pandas patients" and then a few comments later "he doesn't believe the science supports pandas". my conversation with her just confirmed that i thought he'd be a dead end but i did think it was good advice to have videos of the behaviors you're trying to explain b/c so often, drs don't really listen, they just jump to what they already think.
  16. I too just got back from Immunologist today and he also mention RF regarding my son's friend due to the elevated Anti-DNase-B of 680. SFmom - are you saying the immuno was looking at RF because of that anti-dnase number? matis mom - so glad to hear you have a plan! please keep us posted on how it works out.
  17. wow EAmom - really interesting. i just wonder - btwn you and Buster - what are your dinner table conversations like??!!
  18. are we all just in a "the more we look, the more we find" cycle? my older son, who is totally well-functioning has me thinking, he may show some pandas symptoms. he is 7 but sometimes acts like a 13-yo premenstrual girl. my kids go to a montessori school and the theory is of "planes of development" - one entered around the age of 6 that explains much of his quick moods - and the timing is correct. however, i am also trying to track where this corresponds to when i believe my younger pandas son was infected/showed mild symptoms. both my kids, especially the older, i always say "are not at all adult oriented". i've always thought it to be the way shyness presents for them. now i wonder if it's anxiety and pandas related. oh - my head spins!
  19. have you tried to video behaviors to help? i know this is easier said than done b/c i haven't done it during a freak-out. of all places, Dr. Singer's office suggested to video the behavior. i think the today show segment was powerful b/c you saw sammy's videos - the birthday party normal and then when saw the outside ones, it just made you think, 'something's wrong with this kid'. unfortunately, so many drs. think we're all just crazy moms. and even if they see behavior in the office, they can easily attribute it to stress of being in the office. when they see for themselves they may be able to get it. my son had an intense potty phobia for almost 2 years. we were never able to get help b/c whoever we consulted rattled off all the traditional potty nonsense. i would say it was like throwing him to the lions' den but they just couldn't get it. it was so frustrating! you just look at them and think 'i'm not an idiot - you're not listening!" i think it often takes seeing with their own eyes to get it. i don't know if that would help you get abx but it may help them to see something's definitely wrong.
  20. when my son first had high titers and + culture, we had a frustrating ped who threw him on a prefunctory 5-day course of azithromycin. it was horrible. pandas behaviors intensified for that period and about 5 days after. we switched peds, new one put him on 30 days of keflex. within 3 days, he was 100% back. i know most people find help with azith - really interesting how different kids seem to do well on different abx.
  21. homeopathy is a wierd science - most substances are used to treat a variety of conditions. the FDA requires a condition on a product, so they put one - i'm not sure how they arrive at this, if it's the most likely one or most used for that. professional homeopaths usually really know their stuff on what to treat with what product. there are many people/drs that don't believe in it and say it can't possibly work - i've used it myself and seen in it my kids with good results so i definitely believe. our ped was trained in India and had a homeopathy section of his training. he came to the states and got away from it but thinks they can be complements. he has a traditional focus but says his mother was a big believer in homeopathy. i use gelsenium for fever and when a cold very first sets in. (although i don't usually treat fever except if i am concerned for some reason and want to make sure it will come down or boys are really uncomfortable - disclaimer that my kids never have high fevers, although 7 yo non-pandas was hospitalized at 5.5 weeks for fever) i use hpathy.com as a reference. try cure-guide.com for flu/cold info. my local whole foods has a great book on display with their boiron products. you can look up conditions and treatments. i can't think of the name of it - but if you're interested, let me know and i'll get it. we are not using traditional homeopathy for strep and pandas but using PleoSanum, which is a slightly different branch of homeopathy more called biological medicine. i am not sure what the standpoint of homeopathy is for infections. it goes off of treating symptoms. we first consulted a naturopathic dr who used more traditional homeopathy - giving remedies based on symptoms - and used substances similiar to bioron; we saw some improvements, but not to feel we were heading to any kind of remission. i feel we are headed that way with the pleosanum.
  22. He doesn't always make eye contact, you can see he gets very uncomfortable when put on the spot to talk to someone, if a friend says hello to him he gets uncomfortable if it's in a setting where he is now on the spot to respond... if he's out playing with the kids, he's fine. Often people mistake him for being rude when he is just genuinely uncomfortable. I has asked a psychologist about this (prior to knowing about Pandas) and she told me that he was just fine... and that often really bright kids were quirky but that really everyone has their quirks. I can't figure it out really because sometimes he has no problems looking at people and talking and other times he looks like he wants to just jump out of his skin from it. have you heard of selective mutism? it's on the anxiety spectrum but as we all know, could be another presentation of pandas. we had a friend with a child with it. for years, i was concerned he had autistic tendencies. i'd notice at playdates at his house, he seemed fine, but seemed very different at other times and places. she didn't notice for a while b/c he was very bright and at home, totally comfortable. it basically came down to that if he felt something was expected of him - i think mostly with communication - he would completely shut down. previous to knowing about this, my friend and others(eg teacher) thought he was just the most stubborn kid they'd come across. now they treat it as an anxiety issue and more try to help him than all that goes along with thinking he's being a stubborn pain in the a**.
  23. i am not vaccinating either of my sons. i'm not a general flu vaccinator - they had the regular flu shot one time years ago which i now regret. i've never gotten one. a close friend of my boys - age 5 - just got out of the hospital of an 8 day stay. Yes, 8 days! he was admitted for pneumonia and a collapsed lung. he initially tested neg for H1N1 but on another state test, he was +. he's recovered and doing well now. he did not show serious symptoms except the night before they took him in, they thought he could be having labored breathing. otherwise, he seemed to have normal cold/flu symptoms - fever,tiredness. His mother is on a quest now for parents to be very tuned into what may be troublesome breathing when all else doesn't seem too serious.
  24. Does anyone know the reason autistic kids don't make eye contact? have you read Dr. Bock's book Healing the 4As - autism, allergies, ADHD and asthma? he's based in NY. i think someone on here said he was their dr. his book has some stories on pandas. i wonder where he is in the pandas treatment world. i can't fully remember but i think he had theories about vitamin A deficiencies and eye contact issues. i think it was something about the way the retina and cones of the eyes function and how vit A works with that.
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