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Everything posted by smartyjones

  1. 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!!
  2. found it!! when you posted this, i wanted to respond b/c i went to a fabulous lecture last fall sponsored by a local school. it was called "new generations of high-tech youth: how we teach them and parent them" -- but b/c my notes are on paper, i didn't know where they were. couldn't even find a quick link of the speaker's name until i came across the brochure (paper ) today. though more general to kids, not specifically concerning kids with special needs, the sponsoring school is a private school that caters to kids with learning differences. the speaker was great -- great insights from his professional life and personal life concerning today's technology, the generational differences and social impacts -- the good, the bad and the ugly. he also had some really cool research about the effects of screens on the brain -- again, more in a 'normal' brain but you can kind of understand those effects and extrapolate to what we think is going on in a pans brain he is a professor and you can find info at http://drlarryrosen.com/. though not specifically addressing your question about pans and screens, you may find some good advice.
  3. i'm planning on coming up in the a.m. -- likely just in time to make it for the first lecture. i have no idea how many people will be there -- anyone want to try to plan to meet up -- maybe at lunch time -- red roses in our lapels ?
  4. parasites? could be worth a conversation with LLMD about. often go with TBI. toxoplasma gondii is one that can be a big problem.
  5. Jennifer -- that's awesome. a supportive principal can be such a great help!! you may want to check out a recent post of mine - sorry, i don't know how to link it -- i'm the original poster from 2-22. last year, my son was new to public school and on day 2 when he was resisting going in, they suggested 504. we were very unaware of all the ins and outs of public school and SPED. this year, he's in a great school with great personnel. they did testing so they got a good awareness of him. still, his issues do not "adversely affect his education", so he is on a 504, not IEP. even with these meetings, my own research, our psych that is extrememly helpful at the meetings, me specifically asking the differences between 504 and IEP when it was developed, there are key differences i did not understand until last month. it's not really anything that will make a difference in his day-to-day life at school, just very important for me to understand the how, where, and what the 504 means for him.
  6. oh man! just lost my whole post. check out http://pandasnetwork.org/resources-new-research/for-the-school/. glad to hear the principal is open and helpful. even though it's old, i still love the school nurse news. the OT pieces are priceless! maybe b/c they are from the 'inside' of the school system. i will give you a little warning from my experience. last year, i prepared a beautiful folder with the orchestra letter, school nurse news, a list of websites and references. i very much considered what would be informative but not too overwhelming. still, it was too much. unfortunately, our situation turned into the worst possible one. at first, they were very appreciative and impressed - stunned really - to hear of this. however, it set things up that they didn't know any of this - what they eventually thought was some alien disorder - and i was so knowledgable, involved in the 'pandas movement.' it became something they thought they couldn't work with. (even though for the 504 mtg, we had medical pandas diagnosis and pscyh anxiety diagnosis letters) i think a much better scenario is short and sweet on pandas, a doc's letter, and then, LISTEN to what they think and what they are willing/able to provide. i'm not saying you need to accept it if you don't agree. i'm saying you need to KNOW where they are coming from to best decide on how to act that will best help your child. when everything fell apart, i was stunned how quickly it changed. i later realized it reallly didn't -- we were never really on the same page as i thought we were. i just didn't know it. they don't live our lives. they may see some things, but they don't get it like we do. i don't think the best plan is to try to have them understand like we do. i think a better scenario is to understand what they get and see how you can work within that system in a manner best for your child. for my ds, it is pandas that he has, but it presents in asperger-like manners. this is easier for them to understand than pandas that they 'think' they have never seen before. i have only recently become aware of the general disconnect between any particular school and the county level. if you are not getting what you need at your school, there is a whole array of help you may be able to access at the county level. i am amazed at this in my county and can only assume it's similar in others. (although my county does seem particularly disfunctional)
  7. http://www.thepandaseffect.com/home.html is that it? it's in the links of the first website you mentioned
  8. i know we have discussed this here before, but can't remember any conclusions --- ds seems to have a step up in his usually faulty volume regulator after being sick recently. he normally has some trouble with this and is generally a loud kid. were there any conclusions as to if this can be an indicator of brain inflammation?
  9. cobbie -- can you refer me to those papers? excellent your ds is doing well to no longer need IEP -- did you see my recent post on the info i have learned about the differeneces btwn IEP and 504? julia -- you are getting insurance to pay for neurofeedback? very interesting -- was that tough?
  10. good news is ds is 13 days out of fever breaking and seems to be holding steady. yea! knock on wood!!! other news is ortho consult today revealed why his previously loose tooth is no longer loose. apparently, has 2, possibly 3, supernumerary teeth crowding the root area. one is likely almost horizontal and heading toward roots of permanent front teeth, and causing permanent teeth to not move in. ortho thought should be taken out soon. luckily, thought we may be able to start consults now but plan to wait for surgery until after school ends in june. i was interested to see posts a month or so again about 'functional' dentistry and had contacted a few but hadn't gone so may consult there also. please experiences and thoughts of pandas and anethesia and/or pandas and oral surgery. obviously, i'd like to avoid this but don't think we'll be able to for health of his teeth and lower jaw. thanks!!
  11. do any of the supps/meds you are using come in a spray?
  12. Oh LLM -- you know i can't let things go without jumping on them -- it was first a cup of coffee that moved into a dinner -- now i'm going to owe you a beach vacation! have you used enhansa? did you see JAG's recent post on it? i'm thinking that may be something to try in the summer.
  13. sorry LLM -- i know i've asked before -- did you experience/hear of any negative side effects of lysine. ds is back at school this week after 4 day sleeping fever/sickness last week. he is still very tired when he comes home. i'm wondering how much EBV should be in my mind. thanks. forget it -- i found our old conversation. curious to those that have had mono -- i think i always remember fatigue being the main symptom -- is that correct? i'm thinking ds is moving into abnomal tiredness after being sick. he had 2 days of fever/sickness; 2 more days of no eating and sleeping all day; 2 days of recuping --mellow but seeming to get better; 2 days back at school but very tired when came home - not able to do much. today very hard to wake up (after early bedtime last night) and VERY whiney about too tired to go to school. i'm wondering if i should be thinking mono -- ??? i don't think he should stil be so tired.
  14. i remember hearing Enhansa a year or so ago but never have tried it. thanks for the low-down -- ds is now coming off an illness and i think with that report, i'll just let things lie as they are for the end of school and put it on our 'summer fun' list. does anyone know -- is it something that generally has an end-date to treatment or something one would continue indefinitely as some do with probiotics?
  15. JAG -- did you notice any difficult symptoms when first on Enhansa? did your doc just recommend that or did you start that in relation to a specific blood test result? thanks.
  16. pandasphilly -- you're breaking my heart!!! how is he today? are you doing ibuprofen? 3boysmom -- are you saying 3-4 days after he recovered, or 3-4 days after onset of illness? did you do any ibuprofen right when you saw symptoms? you say you were treating as "step only pandas" - what were you doing for treatment? why are you looking into PEX instead of IVIG?
  17. thanks pandasphilly -- ds's fever was 2 days but he is still in day 4 of tiredness and laying around. yeah - the calm before the storm is what worries me. did dr T say anything about ibuprofen for AFTER the fever even if not using it to reduce the fever itself? i'm confused -- i thought alternative fever response was what the body does when it does not produce a fever to try to deal with the pathogen -- such as the cascade that begins autoimmune troubles? it seems you say the alternative fever response is good -- ?? what day is your ds in sickness? you noticed symptoms on day 7 of sickness when he was beginning to feel better? thanks.
  18. seriously??!! it's all i can do to keep up with the problem sets!! you're making 23 and me awfully tempting! especially b/c ds's copper is higher after being on zinc. does it have any info about genetic mineral metabolism ?
  19. ds has been doing so well -- *&%! -- yesterday he woke up with a fever. slept all day, didn't eat nor drink, was nauseated. today is much better. fever gone, eating and drinking. interested in quiet activities. i'm thinking is good -- just that his body was fighting whatever was exposed to. he was at an indoor water park sunday -- i can't imagine anything -- almost even the kids - could survive in the heavily chlorinated pool -- but maybe got some bug there -- ?? or maybe just coincidence and some other bug. i didn't treat with ibuprofen b/c i wanted his body to fight it -- fever wasn't too high -- 101. i'm wondering now if i should give ibuprofen therapy to try to head off any possible post-fever pandas exacerbation. thoughts? thanks!
  20. we see an integrative MD who suggested GABA for ds -- not based on blood testing low for it , but on clinical observ. i can't remember brands, but he had one (i think pharma gaba -- very expensive) and seemed to have no real effect. i think i used those. then i tried a different brand -- i think 200. oh boy -- yikes. can't remember it all but have notes -- definitely NOT the effect we were looking for. tried it again another time, same type of thing. doc said yes, there is a small % that can have a paradoxical effect. NOPE -- no more GABA for him. we see another integrative MD who energy tested it after this and said, no -- bad for him. i do wonder if it is that something is out of whack for him to cause this reaction and it could be something to try in the future -- but likely, far future. momwithOCDson had a post about - oh, i can't remember something that would relate to this -- along the lines of how this could happen -- but it's too cobweby in my brain to remember.
  21. just my opinion . . . when ds was first diagnosed pandas, we also had done a food igg test and he was reactive to over 15 foods. we took him off gluten and dairy. he ate that diet strictly for about 2 years. during that time, he had good times and exacerbations. when we added foods back, we didn't see much of a reaction. he now eats everything. during the time of strict diet - i did think i saw a reaction to red drinks -- pretty immediately. he would only have them occasionally, then i restricted them totally. i generally limit preservatives, additives, HFCS and hydrogenated oils in my house, although they do get them through parties, friends etc. for us, i do not think the food sensitivities were a major contributor to the puzzle as much as an indicator of a whacked system. his system was so very out of balance and these things would easily tipped it more so. now that he is healthier through eradicating/bringing into balance bacteria and viruses, we don't see those types of fluctuations. although i certainly don't like it, he had a red Hi-C drink at a party yesterday with no reaction. so, for us, i think those types of sensitivities to foods (or non-foods as the case of hi-c) were indicative of an unbalanced system but not the cause.
  22. we use rescue remedy -- not a heavy hitter, just something that takes the edge off. i am a big believer in homeopathy - we have treated my pandas son for 3 years and he is - knock on wood! - at a very healthy point. rescue remedy is a different form of homeopathy -- it's a 'flower-essence' blend -- i know -- sounds wierd -- but both my boys say they like it and notice a difference either when they are upset and can't get it together or feeling nervous about something. i saw it the other day sold in CVS. the adult version has alcohol. there is a kid version w/o alcohol, but it is not as widely carried. if you are interested in homeopathy - there are some homeopathic remedies that can help with anxiety. for someone with health issues such as pandas, i'd recommend working with a qualified homeopathy. i myself like GABA. i have the most success with a lower dose -- 125mg and can take one or two. i once took a 500 of another brand at one time and felt very crabby. i took quite a few today b/c we hosted a pool party at a local indoor pool water park and we were responsible for 10 11-ish year old boys in the pool. they had a blast - but during i was thinking 'what was i thinking!'. they could all swim and there were lifeguards - but still very stressful - . -- but i think better with GABA. my ds - pandas - has a paradoxical reaction to GABA. i've given it to him 2x, both with bad reactions. doc said no more -- that's proof enough of paradoxical reaction -- opposite ofwhat we were hoping. a small percentage of people will have such -- so i'd say if you try it -- do so at a time when it wouldn't matter so much to have trouble.
  23. i know you are on it with zinc and zinc/copper. . . but. . . have you done anything in this time frame with increased zinc -- b/c i believe increased copper can have implication with sleep trouble . . . could you have been chelating any copper? or. . . are you supplementing zinc and you've drawn copper too low? copper is involved with thyroid health as well -- although this is making my head spin!
  24. too many cobwebs in my mind for thyroid trouble as post-TBI troubles. . . but, yes, i think our integrative MD says he sees thyroid trouble after TBI and infections. i believe he thinks it is not always life-long - may be something that is treated for a shorter time as a side-effect of the infection vs. adults that are usually considered to have life-long treatment once they are having trouble. ds was just recently checked and was 1.49. i haven't talked yet with our doc -- but for other blood tests, they use their own "optimal functional level" which are quite a bit tighter than lab normal levels. i'll let you know -- i feel 5.2 would be more than slightly elevated according to them.
  25. those in the parasite circles, place much blame on sleep problems on parasites. the major is waking up in the middle of the night -- often at the same time every night. but i believe trouble going to sleep may also be blamed on them.
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