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Everything posted by smartyjones

  1. I also told her that I don't care if he does any math problems or for that matter does any school work. I just want him to get out of bed every day and go to school. momtocole - wow, it sounds like you have found a great school and teacher. Am i understanding correctly that the issue seems to be that the teacher wants him to be learning? yes - i think you fit so many of us here too! my son didn't go to school the last 6 weeks last year b/c of school phobia. this after a bout of school phobia in the fall. granted - he's younger - now in kindergarten. luckily for us, we've gotten to a point where we are all on the same page. i think it's hard for teachers to switch their mindset b/c they see the potential in the kids and just want to help them develop that potential while we are wanting to just get them to be in school! i understand where they come from and think it's a challenge for them to take a step back and evaluate the whole functioning of the kid rather than the academic functioning. my son is at a private montessori school that was trying hard last year to work with us but a little missing the mark. it's small so they couldn't carry him to the classroom with him fighting and couldn't risk him running out into the drop-off line as he struggled. they didn't want me to carry him in and bring the struggle into the small hallway in front of the classroom. i think he had school phobia issues due to pandas exacerbation but then when doing better had become a phobia habit. we disenrolled him over the summer b/c we couldn't risk that if they wouldn't take physical custody of him, we would be liable for the entire tuition. we were then able to work out a system that he goes to before-care - i walk him into the room and once he's in the building, they can take him. it's been fine - only 2 small blips this year so far - of course, he's also not in exacerbation. i tell you this b/c it is working as a good solution, but last year, in the heat of school refusal NO ONE even thought of it - not us, not the school - we all seemed stuck as how to get him into the building. when proposed, it seemed ingenious! also through working with them, we had to make it clear to them - through many different statements - what our goals were - that he's there in the bldg, interacting positively with the other kids and adults. That's IT! I don't think it was until my husband stated emphatically, "i don't care if he learns a single academic thing this year!" that they seemed to get it. although we were saying it, they were still thinking of their ideas of what they hope to accomplish with the kids and thinking that's what we expected from them also. finally, we broke through and they seemed to be relieved. i think it's so hard for them to switch from the academic mindset and the potential they see. it's hard for them to get on board with what they see (maybe even unconsciously) as the low bar we are setting and realize that it's actually a very high bar for this kid at this time. so, i'd say talk to her about small time frames - goals for the next 3 months - maybe start at 1 month. be very clear about your expectations from her as his teacher and work to understand her expectations from you and from him. therefore, you can get on the same page and she can better structure her interactions with him to meet agreed upon expectations. also you may want to check out anxietybc.com and if you find it helpful, ask her to read some info or print off pages for her to read. good luck! Kathy
  2. so interesting Stephanie2! here's my story and my take on the scene. we went to a behavioral therapist who diagnosed pandas. we saw her 3 times. she was watching him and ticking off the "diagnosis" and where he seemed to fit and where he didn't. she couldn't peg him with anything b/c he'd show some characteristic and then disprove it. i did a pdd questionaire rating it at his worst - he came out with something like 26 with a 50 being the low end of mild pdd. he had full blown pandas(no tics) at age 4 and 5 months. he had strep at 22 months and i now wonder any difficult behaviors we saw between those times may have been pandas related. of course, they're also easily explainable as normal development also - that's what we thought at the time. he has always had some positive characteristics of the spectrum - since very young(6mos) he's had an abnormally long and intense attention span - not age appropriate. never to the point that we can't pull him away, just what you'd marvel at being a great attention span. he has a fabulous "puzzle-mind" - always had great spatial visualization skills. he can work puzzles, legos, follow diagrams that you wouldn't think appropriate for his age. he learned to read early and at 5 is a fluent reader. his teacher says how she enjoys working math things with him b/c he just "gets" it - if flows and he doesn't struggle where most his age have to think it out. we've always seen these as strengths b/c they don't interfer with other functioning. on the negative side, he took longer to get into a social groove - not until age 4 and 2nd year in pre-school that he really identified with his peers - always more identified with his older brother and his peers or preferred to be on his own. seemed to have easy sensory overload - places like the circus/sports/crowded events, he'd just seem to zone out and take it all in rather than actively being there - not having to leave, but not seeming to enjoy it. i think he probably resides just somewhere outside the umbrella of autism. luckily for us, in a functioning way that we get the positives and minimal negatives. but just why is that? i think it is that autism is this collection of symptoms caused by various issues and for whatever reason the body reacts in one way or another. as the autism umbrella increases, it stands to reason that those just outside it do also and then we have an even larger population with maybe an easy propensity for external/internal factors - like strep- to push them under that umbrella. it's interesting to think that in our kids young adult working life, they will (and do now) interact with many "autistic" people. i've mentioned before the fabulous book The Horse Boy. the author/father has some great ideas - one main one being that in our culture, we tend to marginalize those that are different and there's going to have to be a cultural shift to embracing them b/c in our kids future - it really won't be so "different" b/c it encompasses so many people! this guy has worked with many indigenous people from other cultures and talks about how those that are revered in other cultures such as medicine men, etc are probably those that we see as "special needs" here.
  3. from another post: My theory (excuse me if this is wrong)....For most auto-immune dz's, you need to give IVIG monthly b/c the "trigger" or the "problem" is still there (b/c the body is reacting to itself). For PANDAS, the "trigger" is strep. So, if strep is gone from your child's body (and strep is not hiding out in the body even in small amounts ) then the IVIG seems to "re-set" to immune system and further IVIG's are not needed. However, it is possible, with enough immune stimulation (strep infection/exposure/possibly other infections) that the PANDAS can be "re-triggered" and another IVIG will be needed. This is why continuing abs is critical, IMO. Swedo has said it's not really known how long these kids need to stay on abs. She used rheumatic fever as an example. They keep upping the age, 18 then 21, then 25... this hits on something i can't quite seem to understand. i remember hearing from a swedo conference that she said something like, 'this is not a chronic autoimmune disease. it hasn't set the child's immune system off in some bizarre way.' i can't wrap my head around this b/c it seems to me that the whole issue is that the chid's immune system is reacting in a bizarre way and it is an autoimmune problem. can anyone help me understand?
  4. Hi Elizabeth. We are using a protocol called from a German company called Pleo Sanum. I originally found out about it on this forum. Try to search "homeopathic" on this forum and you should be able to get some info. Unfortunately, it's difficult to find out about both the company and the theory. Try googling "biological medicine" and "nosode" therapy. It's a very different theory than traditional medicine. when I was trying to find info, the ND and integrative dr we had also consulted were not at all familiar with it. I'll PM you some more info.
  5. when i was first learning about pandas, i read dr. bocks healing the 4 a's book. it doesn't have so much about pandas but i seem to remember for him, the "turn on a dime" emotions and immediate freak-outs were a big red flag for pandas.
  6. pixiesmom - do you get any solace from the fact that you are an extremely strong person? you should! you are! I don't so much refer to my son's tantrums as "rages" although i believe it the same mechanism but milder in that he doesn't have an angry sense - just intense, out of whack upset. i refer to it as an inappropriate fight or flight reaction - set off in a split second. before the summer and help from the explosive child book, we couldn't understand what was going on - it just seemed like he'd simply freak out for something minor or no reason at all. techniques in that book have helped us see where he is coming from. more often than not, his concern is prefectly reasonable, his reaction is totally not. he gets into a defiant realm where only his solution or thought reigns. it is impossible to reason with him - if we were driving off a cliff, the tantrum would continue; if we're leaving somewhere he wants to be at or not going somewhere he wants to be b/c of the tantrum - so be it, he'll continue on. if you didn't know him, you'd think him extremely bratty - that he wants his way and his way only, just b/c that's what he wants. he does much crying and yelling and repeating the same thing. it's very difficult to move from where we are to where we are going - flipping himself out of car seat, making body rigid so you can't click him in, sitting/laying down, one time opening the car door as i was driving. if i pick him up, he will kick and punch but it's b/c i'm moving him, not from coming after me. all the while, his brain is stuck on his initial thought of what the trouble is and cannot move from it. he will sometimes push at me - pushing his body against mine - as someone else described to get me to move somewhere or stay somewhere. i don't think its so much an act of aggression as frustration that things are not as he wants them. he is 5 and although pre-pandas i said he had a defiant streak, he didn't have these types of tantrums when younger. i now wonder if that streak has been latent pandas all along. we're still trying to ferret out if it's more complex ocd or anxiety & panic. he is doing better with these types of tantrums as he progresses with our medical treatment. in fact, as i look over my log the past 2 weeks, the tantrums have all been related to his other big issue which is delaying the potty, he hasn't had these inappropriate reactions other times.
  7. yes, yes - i think somehow yeast and strep are related. not just through antibiotics for strep causing yeast. when my son started with symptoms, he hadn't been on abx for 2+ years. most of his symptoms were similar to autism descriptions from yeast, some ocd order symptoms. we were actually thinking yeast, he came back with high strep titers and + culture. we treated with abx and nystatin. i don't have anything to back it up but just feel it was the abx that was the dominant treatment.
  8. she did come to a point of plateau in her recovery where she essentially "rested" at about 90% herself. She was SO much better than she had been that after 3 months of improvement (we could see improvement week to week) that it was tempting to "leave" her at 90%. Wow - T mom - so interesting! She got to 90% by abx, correct? How long did you see her at that plateau? Do you think it was a reduction in brain inflammation from the steroids that saw the futher improvement? Do you think she would have gotten there eventually but steriods sped it up? - maybe that's too hard to know? I say I believe my son is about 90%. We're doing a different protocol than most - a homeopathic system that is similar in concept to abx but a different substance than tradional abx. He is 10 days into the final ramp up. I was thinking over the weekend he may be making improvements - last year, 3:00 to go get my older son from school was horrendous to get out the door - who knows what the daily trigger might be; friday, it was raining and he wanted to bring a book, he asked for an umbrella, we were a little late and I didn't want to deal with an umbrella to run the 2 secs to the car. I said I didn't know where it was and we didn't have time. He made a thoughtful face and tucked the book under his coat and walked out the door. I stood there for a minute thinking, 'did he just calmly solve a problem all by himself? And at this time that had been so difficult?'. But then sometimes second guess myself or he has a step backwards after a step forwards. Like later that same night, he had a usual tantrum started by delaying going to the potty before bed. If you're comfortable, can you talk a little more about your thoughts on that final 10% and your decision to try something new vs wait for more improvements? Thanks! Kathy
  9. We supplement her with Boost, and we put heavy cream in her milk to help her gain weight. She still hasn't gained even a pound over the last year. Lately she has been picking at breakfast, and I've been finding most of her lunch and snack in her bag from school. I really think there is some connection btwn food/eating trouble and pandas - from a physical side not always related to ocd eating issues. I'm not sure where it comes from - i feel that it is strep in the gut. Is there anyone that has the opposite - a pandas child who is overweight? my son was a big baby and then all over the place on the chart as a baby/toddler. the year before pandas, he'd settled into about the 15 percentile. during first pandas episode, he was looking so scrawny and almost dropping off the chart. a few people suggested i take him off gluten and dairy but that was such a daunting thought to just do with no evidence. we saw a naturopath who ran a food sensitivity panel and he was highly reactive to all dairy, eggs and most grains. we took him off all those. of course, i was concerned b/c he was almost off the chart as it was. i watched his food intake and weight very closely. he actually ended up gaining something like 4 lbs in the first 6 weeks -i think he was at something like 32 lbs so it was a huge percentage! looking back, i had been putting his milk glass back in the refrigerator and then eventually dumping it often. one time he didn't really even touch his chocolate milk at a coffee shop. so i think on some level for some reason, he did not want milk, which he had previously liked. once we eliminated those, he began wanting to eat lunch and eating more. now with no science but mama's intuition - i believe the food problems are the result of strep/body imbalance. there are the anti-dairy people who believe it to be very inflammatory in healthy people. i do kind of agree but think it to be really troublesome if there's something else going on. has anyone with a DAN dr discussed milk and immune issues?
  10. Has anyone found success with DC Children's hospital neurology? My son is doing well so I'm not so much looking for practical help but think it is probably a good idea to have him seen by a neurologist - and this has been suggested by other drs we have consulted - in general terms, not specific to him. i'm trying to do this under insurance and have latimer as a last resort. our roads were leading to Harvey Singer but I am avoiding that. i am surprised at how JHU pervades so many practices and theories in this area. in another situation, that would be fabulous - however not with this! thanks!
  11. we do have chorea (which I didn't know) can you explain that? thanks.
  12. Our new psych suggested the possible use of benadryl for freak-outs/rages/known strong anxiety triggers. I had seen it mentioned here but didn't really understand. She said she has some moms that carry it in their purses. Any stories from anyone?
  13. my son had a sinus CT that showed all cavities infected. the ped had put him on keflex before the CT results b/c he believed it would show such and he had a previous + throat culture and high titers. he did say they may swab in the future if it didn't seem to clear but that it's kind of a last resort thing to try to avoid. so i guess it can be done - but is not pleasant. not sure how difficult it is. he had another CT that showed much clearing and improvement so we didn't do the swab. the end result being that we didn't know for sure that it was strep but the dr. was rather heavily assuming so.
  14. can remain on the prowl for a hook up weeks after hilarious! I guess we take our laughs where we can get them!
  15. sorry - i should have used the word "phenotype" instead of profile. i get that from dr k's website of a particular patient phenotype - "pandas patients are frequently highly intelligent, very communicative child who is also a very good student. " "pandas is more likely to occur in certain phenotype of children - with a history of an early speech development and who usually prior to illness excel in school, particularly in math and sciences." my son fits every characteristic of the 7 signs and symptoms except he has never had a steroid burst. i don't believe this means if you do not fit the phenotype, to rule out pandas. rather, it just seems to be characteristic of many pandas patients. bronxmom - yes i think that's exactly it. interesting! the selecting of words and putting them out. my son is only 5 so doesn't so much write. does your son seem to do it verbally too or just in writing?
  16. from another post: She kept saying "listen, listen" but couldn't express what was driving her extreme behavior glad to hear your daughter is doing well! Is there a name for that? My son does something very similar but he yells and whines "I'm trying to tell you something" while he may be sitting in my lap with my full attention trying to help him sort it out. We met with a new psych today who I am hopeful will be more helpful than the last who was next to useless. I believe my son to be about 90% pre-pandas with issues being potty delay and what I call an inappopriate fight or flight reaction. I don't so much refer to it as "rages" b/c he really doesn't have an angry component - just extreme upset. Still, I think it's the same reaction others refer to as rages. When/If we are able to get to the bottom of the problem, I have been surprised at how reasonable his concern is, it's just the reaction that is over the top. The new dr. was trying to engage him. He was answering her and then when she asked about foods he started answering with his mouth shut or humming his answers. (He is gluten-free, casein-free - so also could be anxious discussing food with a new person) She suggested having him tested for a delay/issue in expressive language. She said many times kids have this as an issue and it is never discovered until 3 or 4th grade or later b/c they have a very rich vocabulary and have learned to read and write with no problems. However, they have trouble, especially when upset, communicating it. She's seen kids really turn around behavior when this is addressed. I find that interesting b/c my son was a very early talker with an extensive vocabulary at age 2 - fitting the pandas profile. Perhaps it's another piece of the puzzle? I don't know where language and/or expression is located in the brain - could it be affected by the basal ganglia? Could it be a side effect of basal ganglia problem? Could it just make a pandas issue so much more extreme? Not sure where if anything this will go, but thought it interesting to share.
  17. my son presented with really no tics or ocd behavior - i distinctly remember the two incidents of once "needing" the rock he'd found then lost in a parking lot and one other time he wanted me to help him with a puzzle but needed me to put the pieces in the correct way. other than that, he presented with symptoms described by autistic kids with yeast trouble. (possible yeast problem brought on by strep?) He was clingy, loud, irritable, not cooperative, hyper-sensitive. He had extreme separation anxiety, used silly rhymes, repeated words & phrases, constantly chewed on shirts, often used potty talk(unusual for him). He had bad breath, was unusually thirsty and his mouth has a bad rash. He's usually had a sensitivity to sound but it was much increased. i think this really presents quite differently with different kids!
  18. for those who do show movement in strep antibodies - does anyone know if the two should show a rise and fall together - or can one rise while the other falls? i don't really know the difference in the two. thanks.
  19. Has anyone had cam kinase results from just a regular lab or must it come from Cunningham? What about the other anti-neruonal antibodies? Is Cam Kinase the most important? Thanks.
  20. TRYPTOPHAN-RICH DIET. why is that? calming effect of tryptophan?
  21. WOW - how did i just lose my whole post when i tried to make something capital?? my son is 5 and is currently doing well. our biggest issues now are an inappropriate flight or fight which i am investigating as anxiety/OCD/separation of emotion and potty delay. when he started symptoms last oct, i was investigation yeast as the culprit. we saw a naturopath who ran an IGG food sensitivity panel(not generally accepted in tradional medicine). he showed off-the-chart reactions to all dairy, eggs, peanuts and most grains. looking back, he was avoiding milk. unfortunate timing, we also started a month of keflex at the same time as food restrictions. after about 3 days of keflex, he was 100%. he relapsed a few weeks off keflex still with food restrictions. the ND's opinion was the food was the problem = his gut was a mess = his immune system was mess and let the strep get out of control. thus, fix the food, fix all else. i believe the strep was the root = causing the other issues. basically the chicken vs the egg. i currently keep him on this restricted diet b/c i believe it helps to not overwhelm his immune system not due to any positive behavior observances. i wrote more detail on the strep & stomach flu thread - #39894 - i don't know how to link it. he is 12 weeks into a homeopathic protocol called Pleo Sanum - a German company - quite hard to find info. it's basically the long-term antibiotic theory with different substances than traditional abx. just now one week into the final ramp up. that is why i annoyingly repeatedly question others if they base results on behavioral observances or other factors. i believe this to be the most effective thing we are doing. he's been on a probiotic from a company called pharmax since Jan. i don't see much results but believe in probiotics. he's been on Calm magnesium/calcium for about a month. i don't see behavior changes but think it helps keep him regular since potty delay is an issue. both my boys take Dr. Sears Go Fish. i love this stuff! it's only 1/2 tsp for 700 mg omega3. i put it in a little OJ. my 7 yo is the pickiest eater on the planet and he likes it. he did have small bumps on back of arms and under/around mouth (EFA deficiency ? strep related?) with have gone away. bumps around lip seem to return if we forget fish oil for a while. don't see other results but believe in omega3. he goes for cranio-sacral therapy. only about 1/month b/c it's out of pocket - i would have him go 1/week or 1/2 weeks otherwise. he's been 3 times. last time, the next few days he seemed to have an eerie sense of calm and peace. i know this sounds whacked but something about the aura around his eyes seemed clearer. i don't usually think his eyes look lost but they seemed clearer. not so related to pandas, when first struggling to find answers, i found much info from the autism community. i discovered many think zinc is helpful for food issues in autism. since my 7 yo is horribly picky(had adnoid issues and finally out 3 years ago - i think contributed), i put him on 15 mg zinc. could be my imagination, after a few months, he really seemed more adventurous to try new foods and did like things more. due to summer schedule - or mis-schedule - we got out of zinc habit. he is back to terribly picky. this past week, we're back on zinc and will see what happens. previous to this, i used homeopathic remedies for myself and the boys. i like the company bioron - blue tubes that also makes oscillicocum(sp?). i gave 7 yo thuja before/after immunizations. was not so strict about this with 5 yo. love hepar SC for sinus issues - we take it every 3 hours for sinus stuffy/runny and it knocks it out. (i'll tell disclaimer that 5 yo had all sinus cavities infected when first treated with keflex - he didn't seem stuffy/runny/ other symptoms - don't think i'd been giving him this treatment at that time). a couple weeks ago, i was feeling something in my brochial/lungs and had occasional bark cough. i took sulphur for few days. my 7yo seemed to have be getting a cold this week - i gave him gelsenium = cleared up. i like hpathy.com and boironusa.com for info. ~Kathy
  22. Thanks. How old is your child who uses it? Do they have to bend their body to use it? Just since school has begun, I've gotten my boys to do XClear nasal spray - you can hold the bottle upright and it has finger holds - very easy to spray. They love to watch me use a netti pot but would never try it! I think I'll have to try this too.
  23. Buster - you're awesome! Thanks so much for all your interpretations of studies and explanations of your particular situation!
  24. She is getting pex in two weeks. Eileen, I know this is not what you are asking here, but I have been curious about your status. I believe I recall your daughter was doing well at the beginning of school. Are you doing PEX to alleviate current symptoms or are you aggressively treating the condition in general? Thanks and good luck with the procedure!
  25. With IVIG, the baseline reset to 0 again. based on your observation of behaviors or your understanding of IVIG?
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