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Everything posted by smartyjones

  1. 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.
  2. 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!
  3. we have had what I believe to be good success in working with an integrative MD who uses homeopathy in his treatment. you may want to do some research into a strep nosode as an alternative treatment for strep. I had previously(to pandas) used homeopathy for myself and my children in treating regular, childhood stuff. for something like strep or pandas, I definitely think it is a good idea to work with a professional. good luck.
  4. you may now add lice to the list of "things you know more about than you ever wished to" it seems to be ever-growing, huh?!
  5. you could research arnica - a homeopathic remedy for inflammation. it is most widely known in gel/lotion form for muscles, but there is a pill form. we have used homeopathy with great results for my ds. I always suggest working with a professional -- we use an integrative MD. my ds energy tests as arnica as something very good for him. we have used it and seen mild results that I have felt happy with. unfortunately, we have not found anything that I believe holds a candle to the speed and efficacy of 'magic motrin' in a flare.
  6. dedee -- I do believe we experienced what this article speaks about with my ds11. he is not my 'technically diagnosed' pandas child. ~3 yrs ago, he did begin showing symptoms, he did have high strep levels and integrative doc believes TBI among other infections, although neg on quest lyme test. he began showing improvement with treatment. we did use a probiotic that I still believe is good for him, energy tested by doc - HMF Forte, 10 billion CFU. I got the bright idea to try something stronger -- I got an expensive well known one -- much higher CFU, more strains. ds went backwards. luckily, I read about d-acidosis - usually only happening to people with short bowel surgery. the symptoms fit him. he improved when we stopped the probiotic. so, yes, I am suspect to that more is not always better for particular people concerning probiotics. ds always had a fine digestion. troubles with digestion were one symptom that something was wrong. that had cleared up and then come back after beginning the troubling probiotic, then improved once stopping it. for him, he also had intense symptoms of fogginess, lack of cooperation, etc.
  7. for those with writing accommodations for school -- what are your suggestions that may be innovative that are helpful? ds,9, struggles with both the physical act of writing (hand tiring), writes in all caps, difficult legibility and with composing - tests with as 2E with lower working memory than other cognitive values so he thinks much faster than he can write and gets frustrated. at home, he speaks into a recorder and then writes or types. although, this also gets tedious for him b/c it is 2 steps. last year, 3rd grade, our goals were just getting him into functioning school environment after disastrous 2nd grade experience and 7 mths on home teaching. he got sick at age 4.5 when was just beginning to write. preschool teacher had previously been impressed with fine motor control and lettering. became a HUGE point of contention for kindergarten when ds refused to write and teacher took as defiance. added much fuel to fire for trouble. so - last year, was just trying to right the wrongs. this year, is looking forward to improving and for functioning. my goals are to have accommodations, while also remediating, so by middle school (2 years) he does not need those accommodations. although, he may at that time use a program like Dragon - I know that is an accommodation, i'm not really considering it so -- I mean accommodations like reduced work load, ease in grading. I am very pleased with the school and how they handle this. the OT is great. she may have some suggestions. I just want to be as prepared as possible and am curious what types of things other people may be doing that may be out of the norm or have been really helpful. thanks.
  8. well -- went over ds's bed and room today with a fine-toothed magnifying glass. no evidence of bed bugs -- no bugs, no exoskeletons, no excrement marks. but, mattresses are encased and all bed linens washed and dried in hot. maybe the mattress covers will either suffocate what may be there or make it easier to not have that hiding place. no visible evidence in any suitcase or bag we took. ds9's rash showed up last week with entire back of one upper arm as rash. ds11 has a few marks in many places. he's been outside a lot -- maybe could just be mosquitos. the bed bug sniffing dog sounds interesting. apparently, bed bugs emit a sweet, musty smell. in a bad infestation, a person can smell. but they can train a dog to smell it. thanks for the suggestions and sympathy!!
  9. we used products from a company called celletech. the one for the virus that caused such the reaction was from Professional Complementary Health Formulas
  10. you gotta be kiddin'! we got home from vaca, which included some hotel rooms and camping cabins, along with our own tent camping and staying at a relatives. the first morning we were home, I noticed a rash on the back of ds9's left upper arm. it has a demarcated line just above where a short sleeved shirt ends down to his elbow. at first, I wasn't too concerned. he has an allergic reaction to sunscreen. the day before, dh sunscreened him and I thought maybe he mixed them up or something along those lines. since wasn't troublesome to him, I didn't want to freak out about it. I guess other things to deal with too -- new permanent retainer in mouth making him miserable and school starting next week. it has not been itching him but looks terrible. i'm putting a cream on it that it seems to be getting better. but past couple days has been concerning me more. today I see a couple similar bumps on ds11's right arm, but only a few. I start thinking it is bizarre they have it on upper vs. lower arm, right vs. left. so I think -- omg - could it be bed bugs??!! I looked up pics and it does look like ds9's arm. he doesn't seem to be getting anything new. how is this kid the lighting rod for everything??!!! I have nothing and am very reactive to mosquito bites. dh has nothing. anyone know much about bed bugs? another thought -- he is on a new antiparasitic regime -- took 2 weeks and one week off -- the day i first saw the rash, was day 14 -- to be first day off. I wonder if this has anything to do with it. curious b/c the bumps don't itch. I don't really think a reaction to the regime would produce the bumps looking just like the bites though ---- ???
  11. lfran -- tried to send PM, your inbox is full.
  12. LLM -- since you keep your advice to us catalogued and organized. . . do you remember advice you wrote about a change in speaking to your ds's teachers -- that they would notice how they spoke to him and how they felt about his actions better than discussing what/how you son is in beginning an exacerbation? I remember the jist - which is, like always, priceless -- but I was hoping to find the post so I could steal your eloquence. do you at all remember maybe when it was that you were thinking that -- maybe I could search for it if I had a timeframe. thanks!!
  13. peglem - glad to hear you see success with MTHFR -- what mutation does she have? we treat with homeopathy, so likely different than what you are asking. . . but I do believe my ds had significant improvement from treating for viruses. however, I do also believe he had his greatest exacerbation, including significant eating contamination issues, when we treated for one virus. luckily, it was short-lived, but it was extreme.
  14. 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.
  15. sorry -- I think someone asked me what's going on with our Vitamin D situation recently -- I couldn't find the post to answer. our latest -- after long ago thinking D activated ds and recently blood testing at low levels -- maybe around 20(?) -- we started up again around Christmas with 200 iu/day. after about a week, increased to 400 iu. no seeming response to either. after about another week, increased to 600 iu. ds then started having symptoms -- the most striking that I remember is this thing he does with his older brother. he did it quite pronounced in early treatment -- I don't so much think it was one of initial symptoms. he is way overly concerned with what brother is doing -- like trying to have everything be exactly the same for them -- eating, moving, dressing -- as if trying to have exact same movements like they are the same person. I think probably other symptoms too. we're almost coming up on 5 years, so - you'd think I'd be quick by now -- but it took me a week or so for the light bulb to shine that it could be the D. so - I think we went back down to 400 and after a few days/week, those symptoms disappeared. sometime in the spring, we changed ds's general sup regime -- we were focusing on zinc/copper balance - with some others. it wasn't such a good change, and ds had some times of feeling sick (including 2x of actually throwing up in the classroom -- made it to the trashcan. good/shocking news -- not at all too concerned - went to nurse's office and then back to class) anyway -- due to that, we put a hold on the D -- not really planned, just went by the wayside. he has not been having any D since spring. it's usually in the back of my mind, but I am not sure what to do about it. long story longer -- today he ART tested to only be able to tolerate 400 iu. interesting -- this doc is not one who is working/concerned about the D. I didn't tell him the long story -- just that ds blood tests low in D and traditional docs are concerned it should be higher and asked what he thought about it. I think D is somehow involved for us but not one of the major players for ds. I would like his levels to be higher. still not so sure how it fits into the puzzle.
  16. ds9 is doing quite well, so just a bit of humor. . . ds11 is at a camp this week of doing fun things...swimming, movies, laser tag, bowling, amusement park. ds9 is sad he's not going to all those places, too. this morning he whines, "you have to think about me". I just looked at him and said, "omg -- my life is thinking about you!"
  17. have you ever checked out the program 'social thinking'? you can google it. there are some therapists that use it or you can buy the books yourself. I borrowed some of the textbooks to learn it and then have some of the cartoon books that I've used with my sons. obviously, I don't know your son or your situation. . . in our lives, there were situations that ds really just did not get the social implications and 'hidden rules' and had trouble with proper perspective, mainly b/c he was so involved in his own experience, he did not have any cognitive function going to the other people in the situation. like, telling you you are not pretty at all - that sounds to me not so much like he is trying to hurt you or be mean, but he is so involved in his own irritation, your thoughts and feelings do not even enter into it at all. not that he wanted to cause a problem, but it's literally all about him and his thoughts. this is a really good program that goes back to a very simple level to teach that we live in a world with other people and we must interact with them on some level. it shows in a way that is easy for kids to get, the advantages to them to learn how to better interact with other people. for my kids, when we've worked a model like this, it has allowed something to click in their brains that we couldn't seem to reach otherwise. good luck!!
  18. T-mom - what are you asking for - medical or psych/coping? I may have 2 coping options you may want to explore -- let me know if that is what you meant.
  19. landamom -- if you don't mind -- you can PM me if you wish -- I am still -- after a ridiculously long time -- arguing with my insurance co about covering my MTHFR test -- you mention you had it done as part of a regular physical -- did your insurance cover the test? do you know what diagnosis code you used? thanks!!!
  20. kleek -- i'm so sorry to add this to your mix when you are struggling with so much -- for us, viruses were a big issue. we did not treat extensively with abx after initial treatment so I have nothing to add about what you ask with that. just our story. . . ds had clear strep issues, 100% remission when he got on the right abx, but it didn't last. we went on to find multiple infections. took a long time -- perhaps 12 mths before we could get off strep remedy - each time we tried we had symptoms. multiple virus issues seems to cause problems. i'd say our treatment time -- we were lucky to find pandas fairly early -- about 2-3 months for diagnosis; then 2-4 months for abx, remission, backslide; then 9 months random searching; then 12-18 months to stabilize. i'm estimating, so likely my math doesn't add up -- but I now say he was sick for about 2.5-3 years -- ages 4.5 to about 7. during age 7, second grade, he had two major exacerbations that lasted about 6-8 weeks. for us, the healing path has been a long, hard road. the good news -- he just completed 3rd grade (his first completed year of school since preschool at 3 years old) with each semester of As and Bs; his teachers understand and like him and celebrate how far he's come this year; he was successful on his baseball team (didn't finish the year last year); he plays 'okay' in the neighborhood of all older kids; he has 4 friends from school (new school this year -- I would have been happy with 1); he went to camp last week with brother and 2 family friends that he was thinking he was too afraid to do and although there were some social bumps, did quite well. he has fabulous problem solving skills although often needs to be reminded to use them. the silver linings (watched it last night) are there -- just hard fought and would not ever have been of our choosing. although both my kids have struggled, they have skills and understandings well beyond their years that they don't even realize. (still makes me cry just to write those sentences) -- this is just a *&^&$ of an illness and can be difficult to unravel. for many of us, we see multiple practitioners with various focuses, at the same time. for you and your family -- you need coping strategies that go beyond what a normal mom that has it together possesses. last year, during exacerbation, our psych suggested we devise a very tight "pen" (figuratively) to allow him to operate in with tight boundaries. we used dcmom's time out strategy that was also helpful. I love the explosive child strategies from dr greene -- not so much to change ds's behavior but to give me strategies to hold my sanity in interacting with him. Good luck!!
  21. nancy -- may I ask, what MTHFR is Bock treating you for? I am having trouble finding good info for single A1298C mutation. thanks.
  22. 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.
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