smartyjones

julia -- your inbox is full! so is your son not experiencing anxiety now?

hi rain. there are quite a few of us on here that have multiple pandas/pans children. for us, ds7 presented 3 yrs ago as pretty classic. ds9 weathered the storm for about 2 yrs as far as reacting to all that was going on with his brother. then he started with separation issues (would follow me from room to room almost on my feet), bad thoughts at night, exercise-induced asthma. he had high titers. i remember saying to dh, 'are we just waiting for him to fall apart before we take him to specialist". i guess we were b/c the next week, his nighttime bad thoughts were extreme. around that time, at a support meeting -- i think the numbers are right -- we had meet about 6 months prior about 1 child, that next meeting 3 of 4 of us were discussing siblings also. ds7, my pans child, would likely have been treated only behaviorally if we never discovered the real causes. ds9, definitely would have been and possibly would have suffered even more b/c he was flying more under the radar. this yr, ds7 has had trouble with school -- basically b/c they were thinking he was a regular kid b/c 90% of the time he is, with 10% extreme anxiety. but it's a 10% that cannot be glossed over. at the same time, ds9 had a sinus infection and was on abx twice. with all going on with ds7, ds9 began acting troublesome -- trouble with some schoolwork, impulsive activity, social anxiety. it's impossible to separate out what may be biologically/infection based and what may be psychologically situationally induced. from our experience, i think it's dangerous to lean into solely one -- it should be looked at as likely affected by both. i definitely advise to take the sibling to your pandas dr if you have ANY concerns, even subtle ones. (JMO -- i don't think the concerns you describe are subtle)

julia -- you see something related to klinghardt, dont' you? have you researched/discussed pleo sanum remedies? i don't know where klinghardt stands now but when i was first researching, i found some info he had written about them - specific to strep. we used them earlier in our treatement of strep. we switched drs (from the one that was a big proponent of them to someone he recommended) when we went on to investigate lyme and other infections -- the other dr uses different companies, so we stopped pleo. now, ds still showed signs of strep after using pleo for about 8-9 months, but he was also on the new remedies for another year or so before he showed clear of strep. we are still treating for a remaining infection. i don't know klinghardt's opinions of pleo for other viruses but some time ago, he did recommend it for strep. we have treated for cmv, ebv and hhv6 with our current dr. ds is doing quite well, still treating for another infection. i'd rate him about 90-95% -- main issue still being inappropriate overreactions.

i read a book last summer, i think When the Brain Can't Hear. interesting info but most interesting was the author's story -- if i remember correctly -- her career was in some realm of audiology; she then had some type of accident - perhaps car -- and seem to recover but had auditory processing issues -- i think the only way she discovered this was because she worked in the field -- otherwise no one would have known -- i think some other symptoms like irritablity that wouldn't generally be thought of to be an auditory issue. the book had good information and perspectives, but not so many real answers for ds -- it was similar to when i read The Out of Sync Child -- the more i read the, more i thought this diagnosis or issue doesn't really fit ds. he has bits and pieces but not enough to say this is a big isssue for him. actually, as i write that, that's how ds got diagnosed in the first place -- a behavioral therapist was ticking off 'syndromes' and 'conditions' as she observed ds. he'd seem to show symptoms of one and then would disprove it. when some things i said resonanted with OCD for her, she mentioned pandas. if that one person wasn't so savvy, i'm quite sure ds would have had an asperger label even though he doesn't really fit -- so perhaps PDD. not so much for you mom b/c your son is older -- but for people with younger kids -- this is now the 2nd or 3rd time it's come up -- so there's the tap on my shoulder -- i need to read again the book, When Labels Don't Fit, that i read a few years ago that offered some good practical solutions for strategies with working with issues.

i do refer to ds7 as 'sudden onset' -- however, this is the story. . . at age 4.5, he had a wild behavioral flip around the time of halloween. he had school refusal, wild ODD difficult behaviors that were undeniable. he also had some issues such as strong thirst. (i can't remember all other symptoms right now). we had taken a trip to Denver the july before. he had unexplained vomiting one night -- we attributed it to the high altitude. he had an episode of extreme cognitive inflexibility at an outdoor party. was his normal self the rest of the trip and once we got home until november. he had had one or two other episodes of such type of extreme cognitive inflexibilty before in his life -- but of course, at that time, he was 3 or 4 and they were very short and it was easily attributable to age -- could still even be actually. he had treated strep at 22 months -- 2 and a half years prior to onset -- of course, we never checked to ensure the treatment 'worked' and the strep was gone. i now definitely believe the issues in july were related -- 4 months prior to 'sudden onset'. just kind of like low level things peeking through. for us, 'sudden onset' was helpful as criteria b/c it was so bizarre and extreme -- however, i do think there are likely tons of cases that the 'sudden' is not so extreme and easily written off as something else that seems plausible and is missed but it really should fit. the exacerbation may not be so extreme and everyone believes it is part of the child's personality or 'a phase' and it goes unrecognized as an exacerbation.

yes, ds does do this and yes, it seems to come in waves -- not necessarily related to times of exacerbation. sometimes, i may notice it in a restaurant or other place -- he is not so much just compensating for a loud place, he sounds like a loud drunk not realizing he's being overly loud. he also sometimes does it at home and has done it some in the past week -- usually related to a time when he is excited -- perhaps a regulation issue -- ? you know -- he may also do it if he has been quiety, intently working on something independently, then when he enters back to socializing, it may be overly loud

oh jeez - mom -- my lack of intellect shows in that i just can't seem to make the synaptic connections to understand glutamate. i know you've tried, but can you refer me to some remedial glutamate info? i guess it's not so imperative for us b/c i had asked opinions about glutamate vs. inositol and we have appt next week that i am going to discuss inositol with dr. . . . in the spirit of not changing/adding too much at the same time. . . . still, i know i've got to somehow gear up for glutamte understanding though.

norcal - i'm sorry, i'm not understanding -- how did you discover this? how old is you son again? so, you sound as if you think it's more of a psychological/coping development than a brain/neurological trade-off? yes, what you mention is something that i am talking about -- ds7 does 'advanced' math in his head, which is all well and good and impressive now -- but i am concerned that he doesn't have some basics or skills that he will need to build on later. so - what types of things did you do to help? we are beginning to work with a tutor who i fell in love with when he said, 'really, what you're looking for is not accomodation, but more remediation.' yes - exactly -- i am concerned to make sure he has the skills he needs!

so interesting bulldog -- i didn't know they were doing iq as part of that study -- did they explain why or what they were thinking to ascertain from that? please keep me posted as to what you find out.

i was just thinking recently. . . i noticed in a news article that Sammy is set to graduate next year with 3 degrees -- (go Sammy!!!). . . dr. k's website lists highly intelligent in the phenotype of a pandas child. there are mentions on this forum of kids in advanced classes and of 2E kids. are there any thoughts or studies with any info about this? could it be some type of susceptiblility in a certain type of brain? could it be overcompensation in one area of the brain for deficits in another? could it be inflammation or overactivity in one area that results in troublesome behaviors and thoughts in one area but similar inflammation or overactivity in another that results in 'exception'? is it just a quirk to notice now and will be explored in 20 years? i guess Sammy seems to have kept the exception while losing the troublesome -- does that show it's not really related?

colleendonny -- it could be some for of ocd . . . it could also be some type of sensory seeking behavior. my ds has sensory issues in exacerbation that he doesn't present when not.

okay dcmom -- with all the advice and help i've gotten from you in the past 6 mths, it seems silly for me to weigh in on this -- but i do have something to say i think with any kid who may be LD or 'gifted', there is such a fine line. you're district seems much more helpful than what we have experienced. i read a book a few years ago written by a boy with asperger's when ds first diagnosed with pandas with school phobia as a big issue - the author stated that he hated school b/c everything was too hard and too easy at the same time. even though ds was 4 or 5 at the time, that struck a chord that i thought that described him also. he's heard me say it many times this year - so possibly he's adopted what i've said b/c he says it now, but it really does fit. multiple drills of easy math are an extreme chore, as are writing activites. 2 sides of the same coin. he was getting reallly frustrated with math b/c it was way too easy for him. so - i think -- what many may think is taking it easy on the child and allowing them to develop other skills or get used to things, may also prove to be troublesome if there's not enough challenge. it's not that they need to opt out of activities -- they may need extra help or extra challenge. but the kids don't know why -- they just know they don't like to do it. for my ds, his MO is avoidance and that's what he goes to -- for activities too hard and too easy. i know we've talked about dsypraxia -- how much have you investigated your daughter as 2E? i guess that's where you're headed with honors track in one area and regular for the other -- ?

did you find the sensitivity from the food journal? did you notice anything other than the ears -- with/without the enzymes? when you started, did you just give for certain food or did he take them regularly for a while? and yes -- avoiding pizza at a party is a bummer!!

bright red, hot ears are usually thought of to be related to food allergies. personally, i think that too simple. . . i think it could be indicative of an immune response -- deeper than food sensitvities or if those sensativities exist -- it needs more attention than just avoiding the foods. -- just my opinion. my ds9 -- who has not followed a strict GF/CF diet, did appear to get red ears and it did seem related to possibly eating -- it seemed that after mac and cheese this would occur. my ds7 - who has eaten strict, and now not so strict, GF/CF did not get red ears in relation to eating. however, he did have them just recently and i think it may have been after he ate an offending food. i have had ds7 on GF/CF -- in the beginning of our pandas story -- we saw a naturopath who blood tested and he came out highly reactive to over 15 foods. i don't now -- and really never thought -- for us -- this was so pivotal. i think it's more indicative that his immune system was in disarray and acting inappropriately, so i had him follow that diet to help his system calm down -- but didn't think it was a be all and end all solution. i do know of many people who believe food allergies are of prime importance to their situation and see great results from treating in that sense -- and i fully believe them for their situation. i think for us, it was one of many indicators of a faulty immune response -- and needed attention, just like we needed abx to tamp down infection.

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philamom -- only mention b/c you are talking about homeopathy for acute symptoms. . . if you're considering some help from that approach.. . better/worse symptoms by the shore; symtpoms worse in the car; symptoms worse at certain times of day -- and mroe -- are all things that homeopaths take into consideration when addressing issues

the recent post on joint pain and short conversation with ds7 just before made me think. . . . has it been determined what the causes for the handwriting issues with pandas are? do we know if it's a neurological issue from the brain . . . or could it be a physical issue? or a combination of both? we are still in the process of evaluating. he has severe writing refusal -- only really writes single words. a 6 word sentence is an extreme chore. usually needs a template chart to help remember how to form some letters. he can dictate a coherent, well thought out paragraph. if asked to write, even a sentence, usually panics and is unable to generate ideas b/c he is anxious about having to write. prior to pandas he had nicely formed letters but was at an age that he was just learning, so we really don't have 'before' and 'after' comparison -- just behavioral observations of what happens when he's asked to write. today he said it's that it makes his whole arm hurt -- and pointed to mid-forearm. he doesn't seem to have fine motor issues other than this. if there is joint pain caused by infection, is it more constant or could it be in relation to function of writing? OTs -- is there any other activity that is the same as writing as in using the same muscles that would/should also show such a problem?

here's what dr. ross greene says about RAD -- http://www.blogtalkradio.com/dr-ross-greene/2011/11/22/parenting-your-challenging-child

oh -- you make me laugh just when i need it!!!!

so you have more faith in the outcome, regardless of the motivation, than me? i would love that to be true -- maybe help soften my rough edge for them. . .

disclaimer that i have not read the read full article. . . and am horribly jaded against JHMU. . . just have to think, "fool me once, shame on you; fool me twice, shame on me" -- no trust from me whatsoever these authors will have anything helpful for us and will do anything helpful to advance the cause and proper treatment for 'IT'. just think the old establishment folks don't change their spots that quickly (2-3-4 years is what i mean by quickly). i think they are much too embedded in their own past and prides to be helpful. i think we need our current champions and a new crop -- not these unlikelies even if in an attempt to save face b/c the evidence is too compelling. can't sell me on the "appropriate treatment" being something other than what they have purported in the past.

more on my life in the bizarro world -- last night i was flipping channels, which i rarely even do, and caught the second half of a House episode in which the woman is hospitalized with a tumor and has schizophrenia onset in her 30s --- can you believe?! -- Wilson's disease. is the next thing a copper lightening bolt to hit me? i don't believe ds to have this disorder but am interested in the copper/zinc issue. if you are treating KPU -- is the focus on the zinc deficiency or the copper accumulation? they kind of go hand in hand, but is it believed to be one or the other to cause the troubles? the theory is that this is a type of detox that becomes hindered either genetically or infection induced and then interrrupts the proper handling of riding the body of infection? is that correct? so this is a type of detox you are treating while also treating infection? is there another way to test KPU than pee test? is there a focus on the liver with this or just the basic that the liver is a detoxing organ?

in doing some research with homeopathy - i've come across some references to copper - which i had asked recently about it's relation to zinc and kpu -- (thanks LLM). today i found this bizarre reference on the website for Wilson's disease. how bizarre is this??!!! How/where is the brain affected by copper accumulation? Generally, the brain is affected symmetrically with excess copper deposition, although symptoms can be worse on one side of the body than another. This may have to do with factors of asymmetric neurologic development, such as being right or left-handed. The copper is often seen most prominently in the basal ganglia, the area deep within the brain that coordinates movements. The face of the giant panda sign refers to a characteristic appearance of the basal ganglia in advanced Wilson's disease. This is a description of the appearance of the basal ganglia wherein one can get an impressionists image of the face of a giant panda. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan

i don't have any insight into the blood levels etc. i did just want to throw out. . . i definitely believe there is/may be/can be a very real role that stress plays as a trigger. although i have not heard it lately, dr l(yale) discussed this at the OCDF convention 18 mths ago. yes -- coming home is a good thing but may also involve uncertainty, expectations, change in schedule, etc. etc. not to mention general stress of college, grades, social. . . we just expereinced what i believe to be a stress-induced exacerbation with ds7. we did see a good response to motrin therapy, which i think basically pulled him out of it. i'd be curious to hear dr shulman's thoughts on the role of stress. . . hopefully he is doing better through the break!

dcmom -- granted, we have had the huge motivator of Christmas (not that we so much threaten with it, just that it exists) and we have had new diversions of activities -- but the 4 minutes has been very effective with snapping out of something or snapping into coooperation. i think it's got to do with the immediateness of it -- just as with a 2 year old. do/did you do some form of this while you are out in the world and get lack of cooperation? thanks.