smartyjones

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so -- do you think the Amantadine helped at all with the opposiiton, or mainly the focus?

trg -- just wanted to clarify -- are you happiest about the the Amantadine for focus issues? it was the minocycline that curbed the oppositional attitudes? thanks. glad to hear you are having good results!

not to bash -- only to caution -- if you go to Johns Hopkins, please be very sure you are fully aware of the PANDAS history with JHMU and the key players there -- there is info on this forum if you do a search

first, mortin theory is similar to steroids, just not as strong, right? we have had success with motrin in the past. last week, i was stupid and used a sunscreen on ds that caused a rash. he reacted to sunscreen a couple of years ago, i thought this one didn't have the troublesome ingredient but was wrong. i generally rate him 90-95%, this week seems to have troublesome behaviors i'd rate as a 10% slip. first day of sunscreen, i thought it was okay. used it a second day. next day, had obviously rash, but behavior seemed okay. fourth day, troublesome with home teacher -- lack of focus, one incident of cognitive inflexibilty, impulsiveness when upset, quick upset. gave motrin that night before baseball game -- did fine at that. fifth day, did okay with school work b/c did much computer work. sixth day, much lack of focus -- did mostly silent reading. gave motrin before psych appt -- did fine in afternoon, much whining and complaining at dinner. seventh day, much lack of focus -- couldn't get through work with teacher, chose to stop work and not get reward time, which is usually big motivator for him. did best that day with introspective, alone work like creating mosiacs and slient reading. was able to keep it together but was like a top just about to spin off the table. today, gave motrin before baseball game -- did fine. i've never given him benadryl but thought about that when rash was bad but didn't give it -- rash is almost gone now. would that be anything to try -- but rash - allergic reaction is almsot gone so that doesn't seem to make sense. i think this is some type of reaction but am unsure what to do b/c it is mild, but i want to contain it. mortin experts, do you think one dose a day has an effect for pulling out of slight exacerbation? should i do round the clock for a couple days? should i wait and see if calms down since rash is almost gone? thanks!!

ds7 is doing very well in general. he had clear strep trigger 3.5 years ago. . . later found other infections, yada, yada, yada. has taken 2 yrs to clear infections, had recurring viruses. .. last 16 weeks. .. seems clear. most pandas symptoms have resolved. .. now in muddled mess of what is slight symptom, what is poor socializaation from having brain under attack during ages 4.5 - 6.5, what is 'him'. most troublesome pandas symptoms and remaining one is overreactions in a flight or fight manner. cognitive inflexibility is very troublesome in exacerbation. he had an exacerbation in the fall due to extreme stress. .. pulled him out of it with intense motrin therapy. he had an skin allergy to sunscreen years ago. i thought oxybenzene was the biggest culprit but stayed away from all the oxy-s. this past weekend, i tried a 'natural' with a couple oxy-s but not what i thought was the troublesome one. i should have been more aware. . . day 2, his face looked red, one ear was red, i thought was sun exposure. didn't see any rash. slathered it on for day 2. day 3, monday -- rash all over. not really troublesome for him, he doesn't even notice, sometimes slightly scratches. today he had a big fight with home teacher over a cognitive inflexibility issue. he didn't get it and then was extremely defensive. . . threw pencils at her . . . an allergic reaction is an engagement of the immune system. . . could this create pandas symptoms similar to how a cold does? if i see more symptoms should i consider this moving into an exacerbation? thanks for thoughts!

i've seen a lot of talk of this but haven't really followed. . . what is it? . . . a genetic issue? defect? lack of something? how do you test for it? is the treatment b12 or are there other theories? my neurologist is going to do some blood work -- basically just general b/c haven't had in a while -- should i ask for that to be added? is it a mainstream medical concept or more alternative/integrative? are drs thinking definite connection btwn cessastion of migraines and this treatment or coincidence? i really see an integrative MD who i follow more his theories and treatments but had intense, recurring migraine so decided to see neurologist just to cover bases. had actually had long reprieve from migraines before this. i get aura, visual disturbance and other neurological disturbances.

eaMOM, peglem and certainly anyone else . . . can you give me your thoughts and opinions on migraine meds? thanks!

i did not see the show,so my comments may not be too valid -- just wanted to mention. . . our therapist (who i think is amazing and very much a needle in a haystack in our past 3 year search) comments often for ds7 that once that amaygdala goes off -- it's EXTREMELY hard to reign back in. that is a hard-wired, survivalistic urge. some of it, i think, is that he is so young, but she says she works that way with adults too, that it's very hard for them to control also. so, her goal is not so much changing that inappropriate instinct, but knowning it's there and having coping mechanisms to work with it when it does start to kick in. so -- the goal for her, is to avoid the extreme reaction -- not try to get used to working with it when it happens-- but working with heeding the warning signs and finding tools to manipulate the situation so avoid the wild situation and problem solve at a lower level. okay -- avoid may be a bad use of word -- i mean - do exposure to a reasonable level and not push it over the edge. we were just talking the other day that she does not beleive that having an anxiety prone person in an anxiety situation (such as troubling school environment) repeatedly is necessarily going to have them get over it. they need other techniques to deal with it and work with it. this is very appropo in our situation -- i realize all situations are different.

would it help you to deal with her if you looked at it as a science experiement of what are her neuropscy issues and how they could possibly be caused by germs that have percolated through her kitchen for years? maybe that could help you remove the personal nature as you stand strong in what you will and will not eat and just know in your own mind that you are the one with the correct hygeine. you know the quote from 1800s or early 1900s when they didn't even wash hands between examining corpses and pregnant woman -- 'doctors are gentlemen and gentlemen have clean hands.' that's your mother in law -- 'mother's have clean germs'

my pandas ds had known strep at 22 months of age. we only know that b/c my older son, age 4.5 at the time, had bizarre whitehead-like acne on his face on Easter monday. it dissipated during the day but never fully went away. the next morning, he woke up with it again. by the time i took him to the dr around noon, it was much dissipated. i asked about strep and the dr said, 'i really don't think it's strep, but we can do a rapid'. it was positive. he was feeling fine. they said they wouldn't culture younger ds b/c he was under 2. the next morning, he threw up. other than that, he was fine. he was also positive on the rapid. he went on abx, but, of course, we never took him back to check it was gone. i do remember we took a vacation still on the last few days of the abx. when we got back, i remember going to an event that he was very tired and looking sick at -- probably a week after ending abx. i didn't really think anything of it, just thought he was still recovering and he got over it. 2 and a 1/2 years later, he presented with 'sudden onset' pandas. his ASO was 898. of coure, we'll never know -- but i don't think he ever cleared that strep. so -- NO -- i don't believe that about under 2. of course, your is much younger, but i still don't beleive it!!

i think it was EAmom who had the 411 on that -- it was something i've been meaning to pay attention to -- but wasn't so much b/c we do motrin now and i knew it would only be another thing to regret b/c i did do tylenol with vaccs. i agree with dcmom about the vaccs. kenneth bock's 4 As book has a good discussion about shedules and individualizing -- of course, i read after my kids were older and fully vacced and i wished i'd had that before but it seemed like a good place to start. dcmom -- i was trying to send you a PM but you've inbox is full. peg -- Congratulations!!!

http://drjilltaylor.com/ it's all very interesting to me -- she speaks much of the differences of the left brain and right brain. in addition (or due to or some combination of both) to pans, ds is a poster child for 2E and i wonder that it seems as if the two hemispheres of his brain don't so much always jive together as they do for most people.

so dh strongly rolled his eyes when i programmed oprah XM into his new car -- the other day, i heard a short piece of an interview with Jill Taylor, a PhD Harvard brain scientist who had a stroke at age 37 and has written a book of it. she said she thought it was a good read for anyone who has themselves or has someone they care for who has neurological and/or brain injury issues. i myself experience migraines with aura so there are some things i feel i can relate to what ds experiences. he goes through times of much "what, what -- what did you say". one time, after a migraine, i kept asking dh 'what' then realized i wasn't having any trouble hearing him but it was not connecting in my brain. i thought this could be what ds experiences. obviously, her stroke is a different event, but i think some things she describes are likely what pans kids experience -- maybe to a lesser degree but with greater frequency or regularity and it provides some really great insight.

could it be that he is experiencing the aura of a migraine? i haven't searched in a while, but there is info on the internet that shows some examples of shimmery triangles and vision issues that can come with a migraine. i don' think i've seen examples of zooming in and out, but there may be something that could be similar. i have experienced neurological vision issues that are extremely hard to explain -- one is something that the 3d of faces just doesn't look right -- it's a bizarre feeling, just something isn't right and i know a migraine is coming. as a kid, i also had some things that i knew just weren't right but i would usually deny anything was wrong. my parents got to the point they could know something was wrong but i would usually deny it. now, of course, i know -- but i can't imagine how a child would react. i know your son is older, but if it's the first time, it would be very scary.

oh fixit -- you're making my head spin -- i'm sorry!! i don't want to send you in any wrong directions -- have you investigated viruses? have you discussed with your DAN that angle? i think that has been a big component for us.

i am very likely also perpetuating urban myths as well. . . a few years ago, i had a friend who was concerned her kids may have lyme; she is a pharmacist. i think i remember her saying she had concerns about doxy and bone heatlh, not just staining teeth. i just wanted to throw it out -- may not be correct but may be something to research/ask about.

i agree with dut. . . also wanted to mention that i don't have the numbers now, but believe it is quite proven that anxiety is more common than adhd. so, certainly could be adhd for your child but could be many other things at play as well if he has known pandas.

sometimes the acronyms screw with my brain -- i was confused thinking, 'wait, i thought LLMD wrote this. are there two people i am confusing -- wait, who is LLM, who is LLMD?'. looks like you're elevated in my mind to an actual LLMD!!!

a couple of years ago, when i first got into coconut oil, i got products from an on-line company, tropical traditions. i believe the deodrant worked fine but it was quite wet. i did a google search and found some homemade recipes and a few possible products that i may try.

i'm so sorry b/c i am in a bit of a brain fog and can't remember things to tell you correct terms -- last year, i began my son on a high level probiotic -- he intenesified the behaviors you are talking about. our dr believed it to be due to the probiotic -- likely one of the strains just wasn't good for him. it's not due to a strep strain -- i can't remember what it's called but it is something that can happen commonly in short-bowel resection patients that do not metabolize the bacteria correctly. you can try to research under my name from last spring. it may not be your issue at all, but if you started seeing the trouble close to when you started the probitioc, it should be something to be aware of.

LLM -- are you saying you think the pyroluria is the weak link? or are you not willing to make such a statement anymore -- is it just one and there is no THE?

WOW -- as always, I am so appreciative of your experience and expertise!! how did you arrive at this dosage of NAC? what brand do you recommend? do you think that is something he will always take as a supplement? thanks!

nancy -- so very happy to hear of your son's health and triumphs!!

e