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Everything posted by smartyjones

  1. where is that obsession line? i am crazily checking this forum the past few weeks. i'm almost late to pick up my son from school - but had to see what was happening here! i loved that post a few weeks ago about obsession with our pandas kids. i know what you're asking about your son - but we all do have our bouts of obsession. my kids go to a montessori school and in the elementary program they call it "exhausting a subject". i think the true test if it impedes functioning and to what degree. dcmom's guidelines sound great - maybe if he unreasonable balks at all other activities too often? dcmom - if you have horse interests - have you heard of the book "the horse boy"? it's a father's story of his way to reach his autistic son. includes going to mongolia! great read, fabulous story and such the connection of what we do for the love of our kids! they filmed the trip coming out as a documentary this fall.
  2. thanks for your thoughts. do you have any tips about journal keeping? i seem to be full-force for a while and then fade in vigilance about keeping track. 2 weeks ago, he "needed" a sticker atlas in Sam's club and carried around a piece of paper from the floor to throw away at home - we did find a trash can there that was okay, very unusual for him to notice trash. A few days later, he had a runny nose. Now, those behaviors don't seem to be with us. But I question if he's level and it's my awareness and tracking that fluctuates or if it's his behavior that fluctuates.
  3. there seems to be a lot of posting lately that gets difficult for me to comprehend - cunningham results, ivig, bbb. i believe we get into this due to behavior oddities and difficulties. once we know it's pandas, does the focus change to the immune and other body system health? is behavior a reliable indicator of healing? do we know? what are you using to track if healing is/is not occurring? general behavior, lack/presence of exacerbation, test results, trust in the medical procedure? my son has had high aso and anti-dnase. are these out the window for indicating anything? thanks!
  4. does anyone have info on what dr. latimer has to say about on-going brain damage? thanks
  5. Thanks to everyone who posted info about Dr. Singer. I didn't think he was pro-pandas and your info helped me understand. I did, however, want to at least speak with his office b/c this is where our current path has lead us - albeit a dead end, I wanted to follow until I clearly saw the end. I spoke with Tina, Dr. Singer's asst. She stated he "does not believe there is scientifc evidence to support PANDAS." If we saw him, he would do a neurological workup from historical as well as medical history to see what is or is not going on to determine if there is a neurological component to his behavior. "It all falls on the expert opinion of Dr. Singer." At first she was rather terse and defensive on their position. We were able to work thru that b/c I was just trying to discover what they would do for us. I find it a little odd b/c the dr who referred us - Dr. Wood, Director of Allergy & Immunology at JHU, honestly sounded interested in PANDAS and that Dr. Singer could help us. Athough, I did understand JHU to be not so helpful b/f we went. My son is doing well now. His main issue is an inapporpriate flight or fight reaction. He started school this week and has done wonderfully after refusing to go the last 5 weeks last year. I think he is not in an exacerbation and is responding well to pyschological "tricks" to deal with pyschological after-effects of neurological behavior - i.e. I think he had extreme separation anxiety due to PANDAS and couldn't go to school, then the not-going snowballed into a phobia. Tina did have a very good piece of advice - to video the tics or behaviors. He has had a potty phobia for 2 years and we've gotten no help b/c no one has understood that nearing the potty has been like nearing the lion's den. We have conquered that last week after 73 days of desensitization from anxietybc.com. My son's teacher told the pyschologist he's one of the most intense kids she's had in 25 years. They pysch told me, "frankly, i just don't see it." of course not - you're not listening! he's only seen the sweet, intelligent, cute, shy boy. he hasn't seen the wild animal freaking out b/c his wiffle ball got hit over the neighbor's fence and their dog is out and he doesn't want the ball eaten. a reasonable fear - it's happened before. an over the top reaction. Or the tantrum at dinner when his brother got the ketchup bottle first. i do think if i can have the wherewithall to grab the video camera during this, it will be helpful b/c no one seems to be able to understand what i am explaining. was anyone able to find help from an insurance-covered neurologist? is the course from a neurologist steriods and ivig? thanks! Kathy
  6. Hi Kari. i sent you a pm with examples of the nitty-gritty repeating. it's based on the book the explosive child by ross greene. i've found it very helpful. daniel also has the tantrums you describe of one cookie vs two - we start taking the game out of the box when he was walking into the room as opposed to him already sitting down, etc. we've also started a "good things i've seen" list on the refrigerator. you make a list of 20 qualities you'd like you're child to have as a person - cooperative, flexible, kind, patient, helpful etc. whenever they do something of those qualitites, you write it on the list and emphasis the positive. we're doing it with 5yo PANDAS and 7 yo not. both boys eat it up! i think they are becoming more aware of these behaviors and wanting to display them. the major difference, however, is that i can look at the list too and see the wonderful things that they do actually do in a day instead of being so frustrated with the negatives. generally, daniel may have 1-2 tantrums a day for 20 minutes or so. they can be bad and it's easy to think the day has been made up of that. doing this, i can realize there is a lot of other time that is good.
  7. glad to hear your daughter is doing so well. do i understand correctly that she didn't have strep but a virus but similar symptoms to PANDAS? i've heard about oil or oregano but haven't used it. i've heard it's very strong and hard to get kids to take it. can you mix it with anything else? is it only for short-term use? thanks, kathy
  8. Hello. Does anyone have experience/thoughts on biotene toothpaste and epsom salt baths? Just as a thought that couldn't hurt and just may help? Thanks.
  9. My son is 5 and started with difficult behaviors last fall. He now flies off the handle at the drop of a hat - immediately engaging a flight or fight reaction. Recently, we've found it very helpful to calm him by repeating back what he's said. I continue repeating until he's calm enough to work to a solution. Yes, doing this you have to temporarily suspend dealing with the inappropriate behavior to help him get to the root of the problem. But then you come back to it at a calm time and discuss what he could have done instead. It's been interesting b/c I've discovered that he's not as irrational as I thought. His concerns are usually valid and reasonable. He just isn't able to properly express them. Ex: he freaked out at a friend b/c she picked up a plastic slinky he had brought to play with. Previously, I would have gotten into it with him about sharing, etc. By repeating his words, I discovered he was concerned b/c she was eating strawberries and he doesn't like strawberries and didn't want any on his toy. Another was he was not cooperating for a picture on a lion statue with Nana. I asked a number of times for him to take the pic. He snottily said NO. Previously, I would have dealt with the rude responce and non-cooperation. By repeating, I discovered he was playing that he was riding a real lion on a safari - reasonable for a 5 year old. I took pics and got some really good ones. I also done this with my 7 year old who is generally relaxed and had some good interactions. I found that I am much more enjoying my kids than thinking they are not cooperative and difficult to be around. You certainly should discuss the inappopriate issues but not in the heat of the moment - at a calm time and have them help find solutions. It's a long-term learning process - sometimes feels very long term but tantrums and fights were getting us nowhere. You're boy is older and may catch on that you're repeating so maybe you could just repeat one word or nod. I knew engaging with him wasn't getting anywhere but didn't know what else to do.
  10. Thanks to all for the information and support I have gotten from reading these posts. My 5-year-old started PANDAS symptoms last fall with anxiety, oppositional behaviors and strange behaviors - chewing his shirt, potty talk, repeating words and phrases. He's had intense school phobia - not attending for the last 5 weeks last year. School starts Monday and we are hopeful. We were fortunate that a behavior therapist we consulted suggested PANDAS. His ASO was high and subsequent culture was positive. A sinus CT showed all sinuses infected. After 3 days of Keflex, he was totally back to his normal self for 35 day of abx + 5 weeks. He then got a cold, titers had come down but were still high - behaviors back although not so bad. 30 more days of Keflex did not see the turn-around we had previously seen. He is gluten-free, egg-free, milk-free due to IGG tests but I don't see so much a difference from that. He currently shows an inappropriate flight-or-fight reaction at the drop of a hat and school anxiety. Our pediatrician sent us to Dr Robert Wood, chief of allergy & immunology at Johns Hopkins b/c he previously worked with him. Wood suggested we consult with Dr. Harvey Singer, also at JHU. From my reading, Singer is one of the major nay-sayers that there is even a PANDAS link. Does anyone have any advice, suggestions, thoughts? Thank you!
  11. I've recently found info in the book "The Explosive Child" to be very helpful. It has some techniques to calm the "kaboom". You're right - there's no reasoning with them. This can help give you something to do other than try to reason at a time when that simply doesn't work. Good luck.
  12. oh please don't feel hopeles! We've been working with the PleoSanum remedies. It's challenging to find info on them. It's a company in Germany and many naturopaths and homeopaths in the US aren't familiar with it. It's a very different concept of medicine - try researching "biological medicine". In my layman's interpretation - we all have microbes that make up our body. They should exist symbiotically. Often due to whatever reasons, that relationship gets out of whack. These remedies help pull it back into the correct relationship resulting in better health. My son is 5 and has only been on the remedies about a month. I don't know that I see a difference but it is a long-term process. I was concerned there was an exacerbation after about 2 weeks but that seems to have calmed. The naturopath we are going to also does cranio-sacral therapy. He's had one treatment and did seem to have a greater sense of calm after that. We've also seen good results with behavior using techniques from the book "The Explosive Child".
  13. Q's mom - I hope your son is continuing to do well. Did you notice an exacerbation when he first began the Pleo Sanum? Thanks
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