smartyjones

[quote name='Chemar' date='Feb 19 2010, 02:47 PM' post='56585' another reason why it is always a good idea to try to use things like spectracell analysis etc to determine whether one has too much or too little of vitamins, minerals and other essential elements and then supplement only if needed what is spectracell analysis?

sorry - no advice - only commiseration! i'm sorry for your having to decide! why don't you want to do the omnicef? my son had a flu bug around Thanksgiving. the next week, his behavior was very off. my husband said he must have strep b/c he's so off. he's on a homeopathic protocol similar in theory to long-term abx. i did not want to think that he could have strep! we took him in. ped agreed something was up - gave us prescrip for abx - 10 days. i didn't so much want to use it b/c if wasn't strep, what was it going to do? also, was 10 days, was that really enough to hit our problem if that was it? so many questions. culture came back neg. i didn't go for abx. he stayed in varying degrees of this exacerbation for about 8 weeks-ish. the past few weeks, he's been great. i've gone back and forth during this time - should i have put him on the abx - would he have pulled out of it then? would it have done nothing? oh yes, i should have had him on it. oh no, i'm glad i didn't. i think you're just going to have to calmly, rationally, quietly make the call. and then just go with it - it's a decision based on what you feel is best and you'll deal with what comes next when it does.

YAY - back on track. he went to school fine today - in fact, this morning was fabulous cooperation. thanks vickie - we went to the coffee shop for a treat after school for being brave. he was very happy with that. i stated i think he's been doing well medically the past few weeks, which i believe is the overriding key. however, additionally, i so appreciate the techniques from The Explosive Child. i don't know if i think it's so much that it makes a difference in him and his behavior as much as in keeping the general level of everyone's anxiety down. it gives me a way to not engage with him. yesterday, by repeating what he's saying, i'm not arguing, convincing, explaining etc -- i'm still involved with him but not engaged. yesterday, he's saying, "i'm not going." i just said, "not going" w/o any emotion. i find it very helpful b/c i think my natural inclination is to try to convince and explain and that leads to trouble. (my mom was telling her friend about it and she was trying it out on her demanding husband and finding it helpful) also helpful is working in small goals - he said "i'm not going to school", i said "i'm not talking about going to school, i'm talking about going in to pee". i was actually shocked on that one that he did go into pee. "i'm not going to school", "i'm not talking about school, i'm talking about putting on pants". the school physically taking him was the key b/c otherwise he wouldn't have gone but the other techniques made it not so bad getting to school.

are those reactive bands in patients who do not have high strep titers? my son had western blot testing 6/09. all bands were nonreactive. also at that testing, ASO was 486, down from 598 in 4/09 and 898 in 12/08. DNASE-B was 680, up from 480 in 4/09 but it was a different lab so i'm not sure if that accounts for the difference. he has never had any dental procedures.

forgive if a stupid thought - but i was thinking about it after reading exorcist article on dr. t's site. btw - loved that dr t. fascinating concept that that kid had pandas! also loved it b/c i am from the dc area - as kids, we loved pointing out in georgetown the steps that something happened in the movie - priest jumped off or something. i knew it was in dc area but loved the details - esp that the real kid went to my husband's high school alma mater! loved the local folk lore! anyway, at the end of the article, the author suggests the kid had psychological trouble - distant father, old world grandmother, loner, etc. it made me think about the medical disciplines - psychology is the thoughts, stories and behaviors we tell ourselves about events that have occured, yes? neurology is the nervous system - nerves and brain cells, often resulting in behavioral issues, yes? psychiatry is brain disorders, yes? why aren't neurology and psychiatry inextricably related? why are people put on psychiatric meds without an evaluation of their neurology? at age 4.5, my son's ped wanted to clear him for psychiatric meds because he was having cognitive inflexibility. luckily, i knew this was no first step for a 4 and a half year old. still, only due to one on-the- ball behavioral therapist, did we discover pandas. shouldn't neurology and psychiatry be interrelated?

thanks for your thoughts! vickie - it took me a little while, but i have gotten off the couch! phone in pocket, though!

sorry - i can't figure out how to post the link - vickie? it's from jan 23, about 10 pages back today.

my son seems to have calmed down from his recent exacerbation. i've been using buster's charting system - he was averaging about a 12, a difficult days of exacerbation in the 20s. probably his first episode would have been 50s or 60s or higher. past 2 weeks, he's about a 6 - a few small things or one medium . we've been out of school for snow for 1 1/2 weeks. today was first day back. school phobia was very troublesome last year, this year has been a problem the day after he's been out sick, which hasn't been that often. today he didn't want to go but we inched out of bed, into clothes, into coat, into car. i carried him in and peeled him off me. he goes to a before care so i can physically walk him in, last year, he had to get out of the car himself and that was too difficult. the edu. dir called me with him b/c he said he wanted to talk to me and she said she'd let him tell me what he felt and then assured him i'd be there at my normal time of 1:45 (we've been inching him into full day the past few months). i know we have to do this b/c if left up to him, he'd stay in his room and read until school is out each day for the next few months until summer break. that's what happened last year. i feel he's doing okay medically so i really do believe we have to do it this way. he likes school and has many friends - it's just that we have been out and this is a change. still is so difficult when he is crying and saying he won't like it and just wants to come home.

so i still can't seem to get a handle of what ivig does -- is it a regenerating of t-cells that we need?

can you tell me what that home kit is? thanks.

my son presented with extreme symptoms last fall - sept/oct 08. a little over a full year prior, we had done potty training in 1/2 day that worked like a charm with my older. not this one - he developed an intense phobia of the potty. he held it as long as he could each day for about 2 weeks. during that time, he threw up. i took him in to be seen, the dr thought his throat looked like strep, rapid and culture were neg. he continued with this phobia for over 2 years until i treated it like a phobia with systematic desensitization. still now, he does things with potty delay - usually worse if he's seeming to be in exacerbation. early on in posting here, someone told me they had never heard of a pandas story without some kind of potty issue or trouble.

i'm just curious how long after having food dye, kids would tend to have a reaction? i would think it would be rather soon - correct? i don't really think it's that but this morning my son was a little hyper - not too bad. yesterday was ds8's birthday party at a baseball gym and i let them have blue gatorade of all things! i would think a hyper reaction would be within 12 hours, not after. not sure if it could be anything or just my horror at allowing them to drink that gunk! thanks.

earnest - so sorry to hear of your troubling day. this is very off-track and i feel you are certainly in good hands if you are consulting with dr. t - just something in your post made me think of this, so i wanted to mention it. i, personally, have a history of migraine headaches with aura. although i have nothing to back it up, i believe it's got to be related to my son's pandas. i had my first migraine when i was about age 11-ish. i had come home from ice-skating and started having numbness on one side, it spread to my tongue and i couldn't speak correctly. my thoughts were also jumbled. i did not have any type of raging or anger or inappropriate flight or fight. i was fortunate in that my dad was a dr at the hospital so my treatment was most likely, extra special. however, no one had an idea what was wrong. i had many tests that showed nothing. they wanted to do a spinal tap but i fought that too hard. they discharged me after a day or two with basically no diagnosis. only a few months later, when my mom was reading one of her nursing magazines, she saw a mention of migraine with aura and investigated. i continued having migraines through teen-age years and then they stopped. they did usually seem to be somehow blood sugar related - such as missing dinner or breakfast. unfortunately, they came back after my pregnancies. i previously thought it was hormonally related, but now wonder if it's some other connection such as infection. sorry to rattle on, just something in your post made me think of how this often comes out of nowhere for me. sometimes i may have an awareness coming on and other times, it's just on with no warning. it could just be that they both are basal ganglia disruptions or problems but i'd be curious to know if the neurologists find any connections.

mom - how did you arrive at that ratio and dosage? i'm confused. i was so happy my boys were taking dr. sears b/c they like the flavor after much trial and error but it has a higher DHA. i don't really think i see a difference in behavior and attention. how long did it take you experimenting with trial and error? thanks.

hey vickie - i suggested she may think about charting behaviors and mentioned buster's system. i don't know how to post a link. can you jump to that thread and post the link to the discussion of buster's charting system? it's from jan 23, today it's back 8 pages. thanks!

i am usually on the pandas board but this caught my eye -- last fall my son, then age 4, presented with abrupt, difficult behaviors. we were lucky in that a behavior therapist suggested pandas and he did have high titers, a positive throat culture and responded quickly to antibiotics. he did relapse once off the first course of antibiotics. during this time, he was horribly sucking his shirt. his entire shirt would get wet - at home we'd just take it off him. he wouldn't accept a substitute. during a recent pandas exacerbation, he was again sucking on shirts, not so bad though. you may want to check out pandas and see if other behaviors fit. i do admit, i see pandas in everyone. . . but for my son, it is a sign of an exacerbation.

i have a fabulous chocolate cake recipe. it has a lot of almond in it though - almond flour, extract, oil and milk. just a slight almond taste though. you really have to eat it warm to get it's full flavor. warm - it's just like any other cake, once it cools, you know it's gf/df. it's good plain or with frosting. i'm usually on pandas - just stopped over here to see something - pm me if you want the recipe.

very, very good news that it seems to be having a positive effect! gat's mom - if i may ask -- was this your first appt with dr. T? did you do the bloodwork prior to the visit or on his order? was it only strep titers and mycoplasma or full immune workup? is that a blood test? is it only a 5 day abx and then nothing? so am i correct that your thought now is that you were trying to go after strep as the root cause and we seeing no effect b/c that wasn't the problem, the abx you were using is effect against strep but not mycoplasma, and now are hopeful b/c you're going after the correct bacteria?

mrigsby - really don't want to stress you out more than you already are . . . but. . . we went to a allergy/immunologist at JHU - the head of the pediatric clinic b/c he previously worked with our ped. my son was testing for some food issues so we wanted to discuss that also. however, he couldn't help with pandas - which i kind of already knew - he referred us to see a neurologist. unfortunately, at the time, he referred us to Singer at JHU, which is not the road to go for pandas! you certainly may be able to get some info from this appt. . . a neurologist is where you may end up. good luck.

gat's mom - have you investigated any food allergy/sensitivities? i agree with what has been posted here, esp. making the decision and just putting out food. also, my son and someone who i believe has undiagnosed pandas, are not necessarily regular eaters. my older son generally eats 3 meals a day and a snack, my younger maybe would eat one good meal, and a bite here and there. last year,in the thick of everything, he was falling off the growth chart - age 4 and jsut about 30 lbs. before we knew about pandas, we went to a naturopath who blood tested him for sensitivities. he was off the chart for so many foods. i was nervous to take him off those b/c what would he eat? and he was already looking very scrawny. however, i watched carefully and the first week he ate more and gained weight. i can't remember the numbers but he gained something like 4 lbs in 6 weeks or 6 lbs in 4 weeks -- either one a considerable percentage when you're 30 lbs! after the first week, he said 'mama, i don't want to eat anything i'm allergic to.' i noticed he hadn't been drinking milk for some time before - i'd been putting it in the fridge and then dumping it. i don't think this is the answer for everything. someone once posted an English article about the enzymes that bind with gluten and dairy also bind with strep in the gut. i believe something like that goes on. anyway, is he a big dairy guy? i'd try to take that out and see what happens. just a thought.

i got the living without magazine from my library - check that out. we use dr. sears liquid fish oil. i tried many that they hated . . . and i can't really blame them, as it is fish oil! this has a lemon flavor and my 5 year old said, "mama, it tastes like the lemon icing bread from the coffee shop." i put it in oj, and still call it "orange juice vitamin" so not to call up any bad feelings about the fish oils we tried.

i recall people mentioning they observed a cessation of symptoms while their child was ill some time ago. if you have observed this, could you tell me about it? i'm thinking it was mainly with tics, but that may be incorrect. my son has not gotten back to 'baseline', (which is still not 100% pre-pandas) since an exacerbation with the flu around thanksgiving. he's doing 'okay', just not well -- he's functioning very well in school but at home, usually has one incident a day of inappropriate upset or cognitive inflexibility or extreme sibling trouble, not incapacitating but troublesome. he had a particularly bad week this past week. i was giving him ibuprofen in the morning which did seem to have some effect. one day, i gave him a morning dose and an evening dose. two days later, he had diarrhea. i was worried i had caused it with the ibuprofen. for the past two days, he's been fabulous. during this entire week, he hasn't seemed sick or tired at all -- just had about a day and a half of occasional diarrhea. could he have pooped out his pandas? please tell me your stories of lack of symptoms when your child's been ill. thanks!