smartyjones

julie -- sorry, i'm speaking from memory and may not have it really right -- you may want to carefully research if you are looking at white willow or willow bark ? -- could have that wrong, don't have notes in front of me -- i believe it has the same active component as asprin so you'd want to be careful if looking to give that to a child.

i would think there are drs who are skilled, trained, experienced or whatever in that and those that are not . . . our experience was we had a useless pediatrician practice when ds first showed symptoms. he was in that office maybe 4 times from late Oct to Dec with behavior, intense ear ache etc. they ran titers b/c behavior therapist suggested pandas. threw him on a CYA 5-days of azith and shrugged it off. each appt they checked ears and nose. we found a new ped who took titers seriously and gave me credit for having a brain. he said he thought sinuses still a problem by way nasal tissue looked and ordered sinus CT which showed all 6 sinus cavities infected. we never cultured it to be sure it was strep but made the assumptions b/c high titers, + throat culture and pretty classic pandas. had a second which showed improvement after keflex. not sure why MRI wouldn't show but there may be an old post on pandas forum that says something about sinus MRI and CT -- you could search or post a ? just saying. . . if you trust Dr. B otherwise, i'd say that adds to his effectiveness, not detracts.

when people talk about the antinuclear antibodies tested by the cunningham test, is this the same that would show on a antinuclear antibodies test from Labcorp? what does this show? autoimmune process? thanks.

sorry - i have no ideas for you. how did she fracture her ankle? i broke my ankle a couple of years ago -- running -- i guess a stress fracture that i didn't know i had and ran on. yes, sad story -- it cracked about 50 feet from the finish line of a 5K i was running. a few months earlier, i had sore soles -- of course, i assumed plantar fascitis from running. it was very odd. i've never broken a bone before. i wasn't having any problems with that ankle until it hurt when i stepped down. i had no idea why it hurt so i continued running to finish the race. drs were concerned b/c it did seem wierd. i had many tests that didn't show any problems. i have wondered if it is somehow TBI related. but, i've never heard of bone fractures due to TBI. how is she today?

can we print this thread and present it at the next NIMH pow wow??

Eileen -- glad to hear they are better after the steroids. i can only share a few things that worked for ds last year. he was younger -- kindergarten -- and was ahead 'academically' (seems silly to use that word with kindergarten) , but he was a very strong reader and good at math so school was not as much a concern for learning than social for him whereas your girls are older so i understand there is more importance. at it's worst around onset and then with first relapse(preschool, age 4) -- i think nothing would have gotten him there. he would have gladly walked into a burning forest rather than go into the school. i feel you're pretty good at gauging for your girls when they're this bad or not. a behavioral therapist we saw at this time was the one who actually diagnosed him. at one of our appt, i remember her saying to me as she was trying to get a handle on him. . . "is it as if he just can't bring himself to do it?" it was one of those moments -- yes,yes,yes, yes! that's exactly it. it's not defiance, it's not pushing my buttons, he's not trying to get his way. . . he just can't bring himself to do it. also one time in the beginning, after a few days of carrying, kicking and screaming, before diagnosis, i calmly told him i couldn't allow him to use such bad manners with yelling and kicking and if that was what he'd do, he'd have to come home and read in his room. he silently stayed in his car seat as we dropped off brother. about 1/2 mile away, a quiet, sweet, introspective voice from the back said, "mama, i don't remember why i don't like school." so. . . our deal that first year became -- preschool, age 4, almost 5 -- if he didn't go to school, he had to read and do activity books in his room. he gladly complied. it was the lesser of two evils. of course, it was only half day - so not really too much time. last year, we made deals -- of course, this can be a slipperly slope but he always complied if he made the deal. "if you stay home today, you MUST go tomorrow." and he would. but that can easily go bad as one day, turns into 2, turns into 3 . . . so, i'd say first, really think about your expectations and what you could be happy with. . . such as, are you really concerned about their academic progress? i mean, if you had her doing work at home for 2-3 hours, could you think that would be a good compromise and not stress you out about losing education? decide where you have to draw the line. (i always try to remind myself that Sammy lost , i think, 5th and 6th grades but went to college with his same age peers) you could set up some things at home that would be a type of home school so they wouldn't miss out academically. set up some boundaries about what will take place at home. "if you don't go to school, you must complete X". not a punitive way, just matter of fact. . . choose A or B. or if you're concerned about social interactions, it can be with that also. you're much more skilled in ERP than I, but maybe some plan like, "if you don't go to school today, we must walk into the building and tell the office" -- whatever,you'd know what would work. check out anxietybc.com for worksheets that you can write the steps on. rewards have never been a motivator for my ds, but he has liked filling that page and getting a small reward -- it's an added bonus, just making us both feel good about it, not a motivator. please keep us posted on how it goes.

interesting. my son had "sudden onset" that was unmistakably something was up. . . however there are some things that were previously signs. he had two incidents of severe cognitive inflexibilty. however he was young and we wrote it off as 2, 3 year old behavior. we used to laugh that he had this odd "put upon" attitude and why in the world did he have it. he was the younger of just two children and really had a nice life. he doesn't have it now that he's been treated. i now think it was a symptom, not a personality trait.

i would consider all of those pandas symptoms. are these recent developments or things he has always done? either way, i'd consider them signs, but especially if they're new. i'd hazard a guess that's there could be more that you haven't correlated as symptoms.

"you'll find the strep and the behaviors are not related" spoken by pediatrician at follow up for CYA 5 day course of azith for ASO of 898, positive throat culture and sudden onset PANDAS behaviors. also the last day i set foot in that office! new pediatrician did 30 days keflex and sinus CT. CT showed all 6 cavities infected and within about 3 days of kelfex, 100% remission of behaviors.

does anyone know info about lyme and heart issues? is there a connection like rheumatic fever and strep with lyme and heart issues? thanks

check out the advisory board of this forum CranioSacral Therapy and Acupuncture John Upledger, DO,FAAO he has a training center in Florida -- very good info on the website http://www.upledger.com/

This morning I did the hot water thing and that helped even more. I think our DAN doc once suggested leaving some drops out in a small dish overnight to let the alcohol evaporate as much as possible. I think I'll try this next, just to make sure I don't damage the herbs. this is not something i do so i may not have it right. i heard the nurse in our drs office telling this to a patient. we take homeopathy sprays or drops which also have a bit of alcohol. i believe their recommendation if that is a problem is to put the medicine in a small cup and float that cup over the boiling water -- or possibly leave out in hot water. therefore, it would help it to evaporate the alcohol but the medicine is not actually in the boiling water. i may not have it fully correct -- if you're interested, it might be something to further research.

great -- i'll see you there!

so what would you believe about breathing issues -- asthma or exercise-induced asthma in a person with TBI? would you consider it likely autoimmune as well and seem to think it would go away when the infection was eradicated? just thought of this as i'm writing. . . .wendy, what's you take now on the "time to heal" that we talk about in the pandas world? not trying to get you in trouble, but i'm curious on your thoughts. PM me if you're more comfortable. thanks!

4 mths into my TBI treatment, i developed a classic bartonella rash on my upper thigh. a week-ish after that, i had a rash on my inner elbow. that area had been itching when i went to bed for a while. it was quite itchy and at times could be quite raised and bumpy. but not really like any rashed discussed in TBI. dr said yes, he believes due to treatment. it's now going away. i'm hoping that's what it is for you.

do you mean frontal lobe damage due to infection or just general damage without a known cause? i am curious about the frontal lobe. the basal ganglia is what is most often talked about with pandas. tpotter -- i've seen you mention frontal lobe. is that implicated in pandas also? have i missed that?

wow -- sfmom -- is dr harris your dr? has anyone read this book -- insights into lyme disease? looks really good. for those like me that have a pandas child -- clear strep indicators, not really other "typical" lyme symtpoms, yet wasn't getting totally well, then we found lyme -- i've a bit gotten over that chicken and egg question but it still does just kind of sit there in the back of my mind, i found this interesting. When Lyme Disease Isn't the Primary Cause of SymptomsThere are cases of Lyme disease where Lyme isn't primary in the overall symptom picture; for example, in those who have Lyme and autism, although I am never really sure. I find that about one in four autistic kids have Lyme disease, but I don't think that Lyme is usually the primary reason for these kids' autism. It's a contributing factor, but may not be the main reason why they have autism. Also, while it may be important for people who have conditions such as ALS, Alzheimer's and rheumatoid arthritis, in addition to Lyme disease, to treat their Lyme, this doesn't mean that Lyme is their central problem or even causing the majority of their symptoms. http://www.lymebook.com/steven-harris

i surely do hope that IVIG will provide much relief for your daughter and your whole family. i absolutely agree with what LLM, meg's mom and OCD mom have said. they are my champoions of advice in the OCD world!! i am not at all condoning behavior or saying there should not be consequences or boundaries. i just want to add a different perspective. my son does things that are similar. for him, i believe it is somehow wrapped up in OCD issues that he must control what is brother is doing or they must do something at the exact same time. i think it's that he believes he is protecting him from harm. right now, for us, it's at an level that is annoying rather than chaotic. i saw it in extreme in July when he was having a herx-like reaction that was classic contamination OCD with food issues. an on-looker would have thought he was being a brat, refusing to eat and controlling others. as it unraveled, i understood he was having intense fears that he would be harmed or die or another family member would. i also think he had some thought that he/that person would deserve that fate b/c they disobeyed a rule. this is heartbreaking and really no different from a child with OCD who must wash hands, touch things,walk a certain number etc. he was ramping up a few weeks ago trying to control when his brother began lunch. he also had CMV rearing. it's improved as he's being treated. however, it's especially hard because it involves another person, a CHILD, and it's to that other person's detriment. i urge you to take meg's mom's advice. do plan special activities/times for your son so he has some time away. also, try to involved your son in coping skills such as what you would do -- i love the Explosive Child -- teach him to repeat back to your daughter what she has said and to remove himself from her area if possible - quickly. it's devastating for the entire family and i cerainly do feel for your son. i also don't want your daughter to be too much the villian, even though she acts it, b/c she is a victim too.

hey, are we on for meeting this saturday?

of course, every kid and every presentation is different. for my son, i consider when he mentions something as a step in the right direction of healing. we can kind of determine is i ask if something is a certain way "just because", "there's a reason", "there's a reason no one can ever know" (bad sign). at times that have been bad, there seems to be a lot of reasons no one can know. i'd tend toward thinking this is a good sign in your case that he is discussing it. good luck.

can you share what you have experienced or know about breathing issues and TBI? thanks.

Love it -- thank you!! What had traditional drs said about that heart murmur -- that he'd always have it?

integrative dr. . . . CDC camp -- seems like an oxymoron! sorry to hear. go to bed. . . . tomorrow is a new day!

so good to hear you have an open-minded ped!! for Lyme, i'd ask him to specifically run a western blot so you can see the bands, rather than a simple ELISA screening test. my ped also ran a babesia, bartonella and ehrlichia titers test on my older son simply b/c i asked him to b/c i said I took him to our integrative MD who is treating other son and he believes him to have those as well. from what i've heard, Labcorp is better than Quest. maybe not as sensitive as somewhere like Igenex but it's a place to start. so nice to have someone one your side rather than having to fight for it, isn't it!

i had migraines with aura as a teen, they went totally away and then returned after my first pregnancy. in addition to those migraines, i began also getting optic migraines like what you describe also. i do believe there may be many causes and triggers for these -- my dr believes it is related to TBI. dawn -- what was the treatment for vitreous detachment?