smartyjones

LLM is such a wonderful source of info, she has given great advice.
 
you may want to check out a post of mine from last year -- it's in the school advice section when you scroll down --' difference btwn 504 and IEP ' from feb, 2012. I think most parents with kids with 504s don't know this -- I didn't, and I'm certainly of average intelligence and consider myself very proactive.
 
one of the biggest mistakes I made was trying too hard to educate about pandas. people are stunned and amazed they have never heard of this and are curious and interested, which so lays the groundwork for us to go on and on and on -- because it is so stunning and amazing. however, it's not the help our kids need in this setting. you can do education of school personnel -- just in another venue, but not under the premise of your specific child's 504 or IEP.
 
I would suggest getting your mind straight that you are there to help ensure your dd gets what she needs to get through her days most successfully. we first think that it is better if the school personnel understand the 'why'. now, I don't think it is - they need to understand the 'what'. now, I think a simple 'medical infection that drives these symptoms - we are working medically to help get her back to health' is plenty and the rest should be while we are working on that, what they see, what she does, what she thinks is a problem and what she needs.
 
we do have docs letters on file for ds -- one for pandas and one for anxiety - nos. if you could have a simple docs letter, I would suggest it. it just ups the validity for school personnel that they are in fact, dealing with a medical issue.
 
there are several categories of 504 -- one is a 'sleeper' like status that the child does qualify but is in remission and does not currently need the accommodations.
 
one other thing I hadn't previously understood, why wouldn't they want certain accommodations. looking on the bright side, as really for the child, not just to not do something extra for them -- they are legally required to provide the accommodations. so, if your child has a scribe written in the 504 but is in a healthy state that she can really write well enough to do it herself but would need that only in a flare - they must legally have a scribe for her and cannot/should not allow her to write for herself. here is where you would need a savvy 504 writer to walk that balance -- not all of them have that confidence to be sure they are correctly complying in the writing of it. they may be, as in our case, rightfully so, concerned to have too much written to allow for too much accommodation. I, stronger than the school personnel, don't want my ds to know his accommodations. for him, I worry of it becoming a crutch. another child may not have that issue.
 
ie --my ds's says "provide advanced warning for scheduled changes and sudden loud noises." so -- for this year, with fire drill practices, someone has discussed with him that it was happening and gave him options of going out early, headphones,etc. he chose to stay with the class with nothing. he did fine. however, my school is really on the ball. somewhere not so aware, it could fall through the cracks and the 'advance warning' could be once the alarm goes off, 'oh yeah, are you okay'. they may not be confident of what the 'advanced warning' is -- so they may have no accommodation, or leave classroom prior to loud noises and not know how to work a middle ground. yes, they should be able to, but I think the reality is that things are not always as they should be. so they often work from a CYA attitude.
 
unfortunately/fortunately, I think a lot of it comes down to the school personnel. we have been in our public school system 3 years and experienced the worst and the best it has to offer. luckily, in that order. the first school, although a 'wonderful, blue ribbon school' was a disaster. they had no ability to understand, even with 2 docs letters, why he seemed fine 90% of the time. he ended up on home teaching for 7 months. we are now in a charter school, which has fabulous personnel and a good respect for kids individuality.
 
there is a great list of accommodations for anxiety -- on worrywisekids.org - tamar chansky's website
 
good luck. keep us posted on how it goes.

I've found anxietybc.com to be very helpful when you are trying to devise your own ERP strategies. there are charts and graphics that can help you make a plan if you have to do it on your own.
good luck!

this is not a story of pandas, nor children, nor what so much pertains to our kids - just a story of kindness I observed and wanted to share. . .
 
recently, on vacation, in a busy resort town, we were in a very busy ice cream shop. they boast of their 40 flavors and list them in multiple locations inside and outside the shop. as we were deciding, an older man with an obvious neurological problem stumbled into the shop. he was by himself. he went up to the young, very beautiful girl and asked, "what flavors of ice cream do you have?". (granted, he had some obvious problem so it is different from our kids that are often just seen as being unreasonable or bratty, but I still found it to relate)
 
she pleasantly choked a laugh and said they have 40 different kinds, showed him the signs and the cards on the cases. I don't know if he couldn't read or it was too much trouble or what, but he said, "okay, i'll take a small vanilla". she served him with a very pleasant attitude. the price was $3 and some change. he gave her 3 dollar bills and then very much struggled with making the change. she very patiently discussed with him that he could give her another dollar bill and she could get it that way.
 
she was so very nice and patient with him. I complimented her on it and at first I don't think she understood what I meant. she then said, 'you know -- I have people in my family. . . he's no different than anyone else.'
 
when we left the shop I saw him sitting and eating it with a woman. I was surprised to see that he was with someone but had been in the shop by himself. I don't know if it was some type of independence task or if he does things like that all the time. she wouldn't really have any idea the girl in the shop was so pleasant and helpful.
 
it just touched me because I think it is so easy for us to think we have to be so on the ball and we are the only ones who are looking out for our kids (and for the most part, I do think we are) but then there are some other times, where people you don't even know in rather insignificant situations, can be helpful.
 
it just kind of gave me hope that things won't always be so difficult for our kids.

this is not a story of pandas, nor children, nor what so much pertains to our kids - just a story of kindness I observed and wanted to share. . .
 
recently, on vacation, in a busy resort town, we were in a very busy ice cream shop. they boast of their 40 flavors and list them in multiple locations inside and outside the shop. as we were deciding, an older man with an obvious neurological problem stumbled into the shop. he was by himself. he went up to the young, very beautiful girl and asked, "what flavors of ice cream do you have?". (granted, he had some obvious problem so it is different from our kids that are often just seen as being unreasonable or bratty, but I still found it to relate)
 
she pleasantly choked a laugh and said they have 40 different kinds, showed him the signs and the cards on the cases. I don't know if he couldn't read or it was too much trouble or what, but he said, "okay, i'll take a small vanilla". she served him with a very pleasant attitude. the price was $3 and some change. he gave her 3 dollar bills and then very much struggled with making the change. she very patiently discussed with him that he could give her another dollar bill and she could get it that way.
 
she was so very nice and patient with him. I complimented her on it and at first I don't think she understood what I meant. she then said, 'you know -- I have people in my family. . . he's no different than anyone else.'
 
when we left the shop I saw him sitting and eating it with a woman. I was surprised to see that he was with someone but had been in the shop by himself. I don't know if it was some type of independence task or if he does things like that all the time. she wouldn't really have any idea the girl in the shop was so pleasant and helpful.
 
it just touched me because I think it is so easy for us to think we have to be so on the ball and we are the only ones who are looking out for our kids (and for the most part, I do think we are) but then there are some other times, where people you don't even know in rather insignificant situations, can be helpful.
 
it just kind of gave me hope that things won't always be so difficult for our kids.

if you do go for MTHFR - read your insurance policy carefully and discuss insurance coverage with your doc -- mine and ds's doc ordered it without blinking an eye when they were doing other blood work on us simply b/c I asked. I am still having trouble with insurance(a year later) -- mainly b/c they are inept -- but. . .
 
quest charges $468 -- if insurance denies -- that is the cost -- be aware of what you are doing -- even without 23andme, you can get MTHFR from some labs for somewhere around $120, I think. insurance negotiated rate is usually somewhere around 10% --- so if they pay, they would pay around $50.
 
ds is neg on all, I have A1298C and am still having trouble with what to do about that mutation only. we will likely do 23andme soon.

would you consider working a problem solving model with him to devise a solution that works for all involved -- key phrase -- "that is a solution -- but we need a solution that works for everyone involved, that solution doesn't so much work for me."

at a calm, neutral time -- sit down to discuss the problem
 
step 1 -- define the problem -- it's interesting to see that not everyone even agrees on the problem or that there is a problem -- you strongly feel you have definitely made it known there is a problem -- he may honestly not even think it's that big of a deal
 
step 2 -- define the common goal -- very interesting for us, ds often has a different goal than everyone else involved -- key point -- how could we possibly have a common solution if we have different goals
 
step 3 -- devise ALL the possible solutions -- many are actually solutions -- not good ones, but solutions; not ones that work for everyone involved, but solutions -- ie. mom just needs to relax -- we write them all down but peg the ones that are not viable for all parties. try for 2-4 possible good ones for all involved; discuss why and how the bad ones are bad; in first doing this, we had to strongly state, "i'm not saying this is what we are going to do, i'm saying it is a possible solution."
 
step 4 -- pick the solution to try FIRST
 
step 5 -- try that solution
 
step 6 -- evaluate -- continue with that solution, pick another one or back to the drawing board for more ideas
 
 
for you, it may be that you spend time in define the problem and goal discussing calmly why this is such a problem -- it's against our rules, it makes other people feel bad, it damages our relationship, etc. then the solutions may be what you are going to do about it -- when you call me an idiot, you will lose X. I know you have done that before, but I've really been surprised at some of the good solutions ds comes up with and he's more likely to stick with it if he's come up with it or has agreed to it beforehand. possible, "when you feel so angry and frustrated you want to call me an idiot, you can do X instead."
 
both my kids interrupt each other and me -- we have a plan to use the sign language "d" for 'don't interrupt'. granted, it's hard to remember to do it -- but it's much more successful and generates much nicer feelings than the other frustrated responses. they do it b/c they don't want to forget what they have to say -- we've also used a notebook to write it -- again, harder to use -- not so successful on the fly -- but saves yelling and arguing.
 
we have also gotten some great help from social thinking -- it's a whole program you can google -- many books etc. simple but just puts it into terms kids easily get and like and can remember.
 
also -- my nephew's teacher once tallied the times she was interrupted in a 50 min class -- something ridiculous like well over 100. when she sat down with him and calmly, rationally discussed how could she possibly get through her lesson plan being interrupted every 20 seconds and he was the second highest offender -- he was stunned he had done that. it was far more successful in getting him to work on it than all the other yelling, reminding, punishing etc. he interrupts with useful, on target comments -- so he didn't even make the connection that it is still interrupting, even if's its correct and on task.
 
good luck.

problem solving and social thinking do take focus and participation from the kid -- not a ton, but you do need some.
 
I remember a book I read a while back -- When Labels Don't Fit - that had some helpful ideas. the fact is, his brain is working differently than what we generally expect from a kid and how we are used to dealing with people -- but, you still need some ideas of how to cope for yourself without losing your own mind.
 
dcmom has some great ideas to help also -- she and I were discussing things on this forum - perhaps around Jan - spring of 2012. maybe you can search some posts from her around then and find some things - or pm her and ask for her discipline thoughts if she doesn't post.
 
in exacerbation, it is helpful for me to think of him as younger - not so much to relax my expectations, but to treat him as such. such as time out like you would do for a 3 year old --- his brain is working as such, so i don't need to excuse the behavior, but more treat him in a way that works better for his brain.
 
just some ideas of what seems to work for us.
 
above all -- i believe in the medical help -- but also just so very much needed coping mechanisms to keep my sanity and better functioning of our entire household.
 
yes, it is hard and unfair! i wish you luck.

would you consider working a problem solving model with him to devise a solution that works for all involved -- key phrase -- "that is a solution -- but we need a solution that works for everyone involved, that solution doesn't so much work for me."

at a calm, neutral time -- sit down to discuss the problem
 
step 1 -- define the problem -- it's interesting to see that not everyone even agrees on the problem or that there is a problem -- you strongly feel you have definitely made it known there is a problem -- he may honestly not even think it's that big of a deal
 
step 2 -- define the common goal -- very interesting for us, ds often has a different goal than everyone else involved -- key point -- how could we possibly have a common solution if we have different goals
 
step 3 -- devise ALL the possible solutions -- many are actually solutions -- not good ones, but solutions; not ones that work for everyone involved, but solutions -- ie. mom just needs to relax -- we write them all down but peg the ones that are not viable for all parties. try for 2-4 possible good ones for all involved; discuss why and how the bad ones are bad; in first doing this, we had to strongly state, "i'm not saying this is what we are going to do, i'm saying it is a possible solution."
 
step 4 -- pick the solution to try FIRST
 
step 5 -- try that solution
 
step 6 -- evaluate -- continue with that solution, pick another one or back to the drawing board for more ideas
 
 
for you, it may be that you spend time in define the problem and goal discussing calmly why this is such a problem -- it's against our rules, it makes other people feel bad, it damages our relationship, etc. then the solutions may be what you are going to do about it -- when you call me an idiot, you will lose X. I know you have done that before, but I've really been surprised at some of the good solutions ds comes up with and he's more likely to stick with it if he's come up with it or has agreed to it beforehand. possible, "when you feel so angry and frustrated you want to call me an idiot, you can do X instead."
 
both my kids interrupt each other and me -- we have a plan to use the sign language "d" for 'don't interrupt'. granted, it's hard to remember to do it -- but it's much more successful and generates much nicer feelings than the other frustrated responses. they do it b/c they don't want to forget what they have to say -- we've also used a notebook to write it -- again, harder to use -- not so successful on the fly -- but saves yelling and arguing.
 
we have also gotten some great help from social thinking -- it's a whole program you can google -- many books etc. simple but just puts it into terms kids easily get and like and can remember.
 
also -- my nephew's teacher once tallied the times she was interrupted in a 50 min class -- something ridiculous like well over 100. when she sat down with him and calmly, rationally discussed how could she possibly get through her lesson plan being interrupted every 20 seconds and he was the second highest offender -- he was stunned he had done that. it was far more successful in getting him to work on it than all the other yelling, reminding, punishing etc. he interrupts with useful, on target comments -- so he didn't even make the connection that it is still interrupting, even if's its correct and on task.
 
good luck.

grace -- I don't have personal experience with specifically an ART practitioner -- however, I have read and seen web lectures of Klinghardt. we do see an integrative MD who uses something kinda/sorta like ART.
 
I would ask you what your thoughts are on acupuncture. I consider the energy "manipulation" to be of this type. if that is okay with you, you'd likely be okay with what you're thinking of pursuing; if not, perhaps not. also, i'd ask you what you are thinking to do with the information you receive -- it would likely guide a path of supplements, diet, perhaps traditional meds -- would you think to follow it to the letter, pick and choose or say no thanks -- that may also help guide your decision on going in the first place.
 
we do not see dr o. however, I did see her speak at a recent TACA meeting and found her very interesting. she is a rather traditional doc -- however, she does have a practitioner that has some type of relationship with or refers people to - she has a link on her website and she did mention it at this lecture -- that has a very good website that has good explanations of this type of medicine that you may find helpful. you can look at the website at http://cornerstoneintegrativecare.com/
 
good luck in your decisions.

natural -- are you aware that your behavior list reads like a pandas symptom list? also, are you aware that what is commonly referred to as PANDAS has many more causes than solely strep? PANS -- is the name used for other etiologies. i'm not so sure that many/most/all 'mental illness' does not have root in infectious cause. so - perhaps the mental illness you refer to in your family trees is shared sensitivities to infections or other body systems gone awry. perhaps what you refer to as her "always" neurological issues has been due to this type of trouble. perhaps not -- but if it's something you feel you should investigate, then i'd say you should.
 
i appreciate your desire to treat her with natural supplements -- we see an integrative MD who treats with homeopathy. my ds is doing very well on this path. there are many of us who have done so. i believe getting to the root of the issue(s) is imperative. please research and discover more about PANS and those pandas patients that did not show titers or cultures,yet saw results with treatments.
 
when my ds was first diagnosed, he was put on a 5 day course of azith. ( he has allergies to penicillins) it was disastrous. our then useless ped stated, "i think you'll find the behaviors and the strep are not related." he had titers of 898 and a positive culture, sudden classic behaviors. we switched peds. the new one put him on 30 days of keflex, did a sinus CT which showed all 6 cavities infected. he showed 100% remission in about 3 days. unfortunately, it didn't last. he backslide about 30 days off abx. we then kept searching for answers -- found many other infections. most of us here would not think 5 days is nearly enough to eradicate the type of strep we have dealt with. my ds had a confirmed strep infection 2.5 years prior to pandas onset. i highly suspect he never kicked that initial infection.
 
you did see a change after 5 days on the abx.
 
i don't know that your dd does have pans or doesn't, but i'd advise to not back off the thought of infectious etiology until you feel it's correct to do so. good luck!

tpotter -- sorry to hear this. even more sorry that i have no where to refer you. just wanted to say that i am with you in your quest to discover this important information. i think you are very much on the right track in working to discover this and unfortunately, you are simply ahead of the medical knowledge/concern at this time.
 
what does your ART doc and LLMD say?
 
2 years ago, my ds11 had labored breathing during sports. our ped tried to be thorough -- he blew very low on the tube thing, had low pulsox - chest X-ray was clear, blood tests showed nothing, EKG showed small blip, doppler cardiograph showed small heart murmur. diagnosis -- exercise induced asthma, likely inhaler for rest of life.
integrative MD found lyme, bartonella, babesia, myco, strep. now he is doing great with no inhaler. mostly keeps up with kids his age.
 
i know not nearly as serious as what you are facing -- but, just to tell you i very much think you are right to follow this and make sure a new valve will not suffer.
 
good luck in finding the correct info.

sorry - no real time to reply, but YES!
ds was, i think, the ripe old age of almost 6 at the first time. doc said somewhere, somehow his immune system took a hit and then everything else piled in.
good luck with treatment!

We charted our daughter on 11 variables each rated 0-9.
1-3 there, but barely
4-6 meant pronounced event but not constant
7-9 meant huge impact, disabling or unable to function
These were:
separation anxiety
social anxiety
emotional lability
lashing out/hitting/biting
restrictive eating/skipping meals
contamination fears/hallucinations
demanding defiance
OCD measurement rituals
OCD repetitive questioning
large motion movement abnormality
illegible handwriting/fine motor tremor (includes dropping things/clumsiness)
An exacerbation would be a jump of +15 points (typically 2 or more items going from nothing to severe). I'm not sure our cut off is useful to anyone else, but it is what we used. The rise was over 3 days and lasted typically 4 weeks.
 
Buster
 
 
i hope you don't mind Buster, but i pasted this from another post b/c it is so fabulous, i can't believe it! for a year i've struggled with keeping a log of behaviors that has the right info but is easy to read and track. i have a couple spiral books and can't access trends etc. after you wrote this, i started a chart with our specific behaviors on the left and 7 columns for the days. it is so great! on the back of the page, i'm writing details of the larger events.
 
i started on a thurs so i've done it for 2 weeks. i can see the first week had a few days in the 20s, others in the single digits for a average of 11.85. the next week, has a couple teens and singles for an average 9.0.
 
this is so much easier with more accurate info. thank you!

jen -- so sorry to hear it's so tough!! i have no concerns whatsoever about her missing school from an academic standpoint. i wouldn't put much weight into these next weeks from a social standpoint either since it's almost to the end of the year. what concerns me is the fact that OCD and anxiety are such 'give an inch, take 400 miles' disorders.
 
why do you say you feel with a few weeks of treatment she will be back to her happy self? my ds has had some issues - like intense contamination food refusal in relation to an anti-viral, that melted away and never returned - so i understand if you have seen it before and believe the same will happen again.
 
however, he's also had things that have come up in exacerbation and stuck after he was healthier -- many relating to school anxieties and refusal.
 
i've found a lot of help from anxietybc.com. could you plan to have her out for maybe a week, but have a schedule of things you do that you plan with her -- like day 1, you get ready for school like normal but go to the library instead; day 2,
you get ready and drive by school; day 3 you get ready and go to school and greet the office staff, etc ?
in that way, you are not having to deal with what you are now (hopefully) but you are keeping the expectation that school is where she ultimately belongs. maybe that would give you a chance to take off the pressure and see how she reacts. also, having a time during each day that you work on something like What to do when your brain gets stuck.
 
just our experience, but my son did well with these types of things when he was in exacerbation - these little baby steps like you would deal with a phobia. now that he is healthier, we have to be tougher, i do think you can relax some things when in exacerbation but i do also fear sliding into bad habits that come from the best intentions that end up more harmful in the long run although helpful in the short run.
 
what do you do in the am when you see her anxiety rising? are you familiar with The Explosive Child? we've gotten much help from the repeating tactic. like she says she doesn't want to go - do you then explain she must and you don't want mr. worry to take over, etc, etc --it can be really helpful to just repeat what she has said -- "you don't?"; she -- i hate it and i feel sick all day; you -- 'you feel sick all day?' it can be a good way to keep the level from escalating and can sometimes lead you to some good insights. often for my ds, it would throw it back to him and he would realize he didn't really need to argue his point and he'd drop it. also, i found it a really good way to stay involved with him without me being dragged into the emotion of the ordeal.
 
good luck!!