smartyjones

marilina - interesting! are you working with a dr or did you just find this on that post?

i asked b/c i thought there was some issue with stomach trouble. my son has had some trouble this week and we've given him motrin more often than ever before. before had been a few days here or there during an exacerbation with the flu. this week, sunday he was having a irrational tantrum over something and his mind switched track to all-okay 15 minutes after motrin. also b/c he was going to a hockey game that afternoon - if any hockey fans here, the Caps stadium is insane with sensory and every other kind of overload. the next few mornings were a little troublesome, so i gave it before school. then tuesday was my older son's birthday. we had given it before school and then again before we went to dinner. yesterday and today again before school. today he's had diarrhea. i didn't know if it was something that would cause that, that fast - 5 days in a row, 2 doses one day and diarrhea 2 days later. i'm not sure. maybe it's a bug that was causing the troubling behaviors - ? - anyway - the issue seems to be more of a long-term use and long-term trouble - yes? at any rate, he's not going to school tomorrow and i won't give it to him. thanks.

oops - i don't know how to edit the header - i meant shed any light? from one of michaeltampa's posts no antibodies means your immune system is too weak to make any? or does it mean no infection needing to be fought? anyone care to comment? this is something i recently have been trying to wrap my head around and can't seem to get it. b/c obviously, if one rarely gets sick, you'd think they are healthy. prior to pandas, i've thought my son was average as far as health. he was sick less often than my older son as a toddler. he'd get colds etc. but wasn't sickly - even looking back, i'd say he was average - not sick often, not never sick. he did, however, occasionally (once every 6 months or so) run a fever or throw up and then get over it. i thought it was just how his body processed whatever had infected it. i now think it was latent strep rearing. no way to know now.

thanks michael. so if i'm understanding correctly, you're using naet as a diagnostic tool and then treating with both naet and traditional meds? how long is your typical naet appt? do they tell you a time frame that they think you'll be healed or does it just depend on how deep the trouble is?

what is the stomach issue with ibuprofen? does it just make you feel nausea or can you throw up? is diarrhea a side effect? can this be dependent on how much - once a day is fine, twice is too much?

hilarious! although in my case, i'm not pretty sure. . . i'm sure!

Or (HeHe) maybe mingle and see if we could match the person to the forum name!!! hilarious! that would be awesome! how funny to see the how the mind picture matches/mismatches the reality!

michael - did the naet you did involved you holding the substance and someone testing your body? isn't there a treatment that goes along with that testing? why aren't/didn't you do that? is that treatment something they do in the office or something they give you to ingest? thanks

hi Steph - so very interesting to me that a psychologist recommended this to you. my son has been gluten-free, dairy-free, egg-free for exactly a year tomorrow. today is older son's birthday and the appt when we got back the test was the day after. he was immediately off everything that day b/c his results were off the chart. i have not seen a difference for him in behaviors that i can attribute to this diet - he's had exacerbations while still restricting these foods. however, i do still do this diet b/c i believe for him, it is a tax on his immune system which is not functioning properly right now. getting started is rough b/c it is so different but once you get into it, it's not as hard as you'd imagine. we eat much rice and potatoes. we all do still miss good bread with dinner though. i feel for you that it is expensive - especially if you're looking at for 7! do they like veggies and fruit? we all here tend to be all or nothing people so i think it was actually easier to just do it rather than trying to do it slowly. let me know if you need some ideas. i found the magazine living without helpful in the beginning.

i have found that you need to get the results from the dr. we've been fortunate in that all drs have happily given them but those results technically belong to you, not the dr's office so you can demand they give you a copy.

my non-pandas son,(although i do see some mild, mild possiblities) has occasionally recently complained of cold legs - not hurting joints, cold legs. we are experiencing cold weather here, but anyone heard of anything with that? thanks.

a while ago someone on this forum mentioned a binder - i thought - that's it! a binder! i now keep all tests, etc in a binder and it's much easier to locate things. i also get a copy of all labs that are run.

just curious michael - do you feel you want to repeat or need to? is it connected to any other thoughts other than just the doing of that? do you feel that repeating is different from other tics you may have? do other people notice that you are repeating things or is it just something you note? sorry to pry - i just find it fascinating to hear things from an adult perspective. thanks!

i really have no advice for you b/c i don't know the differences in abx and the reasons why to use one over the other. . . but i will share our experience. it was when we first discovered pandas, high titers and a + throat culture - approx 3 months after onset of sypmtoms - however, looking back some mild indicators the few months before. anyway, he was put on a 5 day course of azith. many/most seem to have great success with that abx. it was horrible - all behaviors intensified, some that had left returned. he was terribly clingy. i was so happy when the time ended. i don't know if he could have improved if we'd done it longer but i think if it was a longer prescription, i would have had to have changed something b/c it was much worse than with no abx. about a month later, he was put on a 30-day course of keflex. within about 3 days, he was 100% pre-pandas. he did relapse a few weeks off that 30-day course. i don't have much to really back it up, but i am a strong believer in that some abx work for some kids and some make things much worse for some. have you tried other abx?

hi Sandy - i would definitely be interested to hear what your daughter is doing. my son is on a pleo sanum protocol. he was doing well but had some issues with an exacerbation back in nov due to the flu and now some residual things. during that exacerbation, i also put him on hyosycamus - which i was stunned when i read the profile b/c i could have written it myself as a list of his troublesome behaviors. aside from pandas, we've had great luck with gelsemium immediately at the onset of a cold, oscillococcicum for flu and hepar sulphur for congestion. i'm interested to hear about the homeopath's view that she was pleased to hear of a cold. did you daughter previously have no reactions to anything? had you thought she was extremely healthy?

yes - good reminder. the same thing happened to us in december. i called for the result - they told me neg - i said, i'm talking about the culture, not the rapid - are you sure it's the culture? yes. i went in to get a copy of the lab - (i now get copies of everything) - they hadn't sent anything out. i was so upset. they did it again, but it cost us a few days!

yes - i think it's all related! my son does know the days of the week in the correct order. i have noticed at times when i think he's not doing so well with other things, he seems to ask me about days - what is after today, , is saturday a school day, and he can't seem to remember the order, etc. i've noted it in my mind b/c i know he knows the correct order and i've wondered how that plays in b/c it has seemed to be at the same time that other things are ramping up.

i do think these odd speech things are a symptom. my son was very early talker. looking back, before he went to pre-school at age 3 & 3 months, he would occasionally/often do this talking in rhymes thing. we thought it was interesting but not worrisome. now i definitely think it's related. during exacerbation, he does annoying silly rhyming and repeating with some baby talk. now, he sometimes does things like you are describing. not really noticeable to others as anything but i notice if he's doing it often or annoyingly and think that is a ramp up of symptoms.

what do you mean - the fact that a rash occurs can indicate another infection, EBV? he got the reactions with the first dose and was so young (under 2) that they switched him immediately. my head is starting to spin - i can't remember - is EBV related to chicken pox/herpes?

does it seem to anyone else that there is a heightened reaction to abx mentioned on this forum? i don't know how common abx reactions are - i think fairly. i just wonder if there is some relationship? is it simply that we already know our kids are not having appropriate immune reactions and this is just another manifestation of that? my previous ped (who was quite useless) said my son had a reaction to penicillins. however, when i got the records, he first reacted to omnicef at 18 months after taking fine at 6 months, switched to augmentin. then reacted to amoxicillin at 22 months, switched to zithromax. both reactions were rashes and he was switched immediately. he took azith at 4 1/2 when we discovered pandas and didn't have a rash reaction, but had terrible behavioral ramp-up of all pandas symptoms, even some that had left. he did fine with keflex a month later. just curious if anyone else has thoughts on this. . .

Kayanne - what year easter break was that? you're near philly, right?

can anyone explain to me what mycoplasma is? i've googled it but can't seem to understand - another type of bacteria? a changed bacteria? thanks.

oh my - just lost my whole long post - - long and short of it, my son is at a private school. they have been supportive - come up with a good solution of him going to morning care where i can physically hand him over if i need to in a small room. is the new school willing to look for creative solutions? last year, not i nor the school even thought of this, they came up with it over the summer and it's worked great. we are looking to switch him to public next year - many reasons - end of primary program - financially, it's time - if there is a problem, they are small and just don't have the people/resources to help. he's been fine this year, but it's a small staff. have you thought of worst case scenario and who would help and where he'd go. school was relieved to hear about our seeing behavior therapist and then psychologist and hear ideas. our current psych terms it that they just are worried something will go wrong and they'll have nowhere to turn. have you involved new school with psych or let them know you have that end covered? be clear about your expectations of the staff - sometimes they're worried you're expecting something too big from them and it's not even what you're thinking. have a plan worked out and be sure eveyone is on the same page. does your county have an special office you can go directly to? we are not in the public system, so i just called the county child find office for a speech issue b/c we didn't have a principal. can you just go directly to them and find out options - perhaps another school with a more suitable program in the county?

hello Greg. i am so sorry to hear what a bad night you had last night! i don't have scientific information to share with you but will just tell you a little of my thoughts. OCD does come under the umbrella of anxiety, the two are intricately related. my son presented with separation anxiety and defiant/obnoxious behavior. we were fortunate in that a behavior therapist saw a connection to his behavior and tenants of OCD and suggested pandas. when we tested, he had high titers and a + throat culture, no typical symptoms. even now, a little over a year later, his 'official' psych diagnosis is 'anxiety - not otherwise specificied', not OCD. i am willing to see that many behaviors may have OCD roots - but on the surface and even a little deeper, he doesn't seem to have an intricate web of thoughts, it's more like a quick anxiety reaction. don't let the OCD get you hung up that it is not pandas. personally, i'd like to see anxiety written into the diagnosis end of pandas with OCD - but i understand how it's been formed with research studies. along with others, i'd certainly suggest a strep test and check out webpediatrics.com - i found the pandas info there extrememly helpful. good luck.