smartyjones

Success!! Thanks so much for your thoughts and words. Meg's mom - you are a font of good information! Thanks for pouring your heart into your posts - i always learn so much from you. Isabel - you are so right about the executive decision and staying with it. i am not sure what was the 'magic' bullet - we gave him motrin last evening and this morning. we had gotten some new clothes and shoes over the break - we focused on getting dressed in new stuff in the am. he had his favorite breakfast. we tried to talk about steps but it was loose b/c of too much time in between - first school day after flu was friday before thanksgiving, he drove with father and brother but didn't go. last monday was school conferences and he played in the after-care room for 1 hour. today's step was going all day - which for him is 1/2 day. he left the house and got into the car fine, simply saying he didn't want to go. was quiet on the drive. as we approached, he said he'd go 'tomorrow'. (frightening - i know tomorrow really is delay for never!) i was able to be calm and quick. i carried him in reminding him of story we wrote in the beginning of the year based on the book Brave Ben about facing fears - it's cute, Ben walks through the forest and sees a spider, dragon and witch. he laughed. we got into the room and the teacher took his hands and i said good-bye and left as he was crying and laying on the floor. they said he was okay after more kids started coming and was fine for the day. so true that if you give OCD/anxiety an inch, it takes a mile. i'm hopeful we'll be okay with school b/c he got there today. we go to naturopath today and ped tomorrow.

there's been much talk lately about ibuprofen - can you tell me just what you've seen? my son is in a mild exacerbation after the flu. school phobia was a huge issue last year. he was out 3 days for the flu and then the whole week for Thanksgiving break. he was complaining last night of not wanting to go. i gave him motrin last night but saw no difference - he was continuing with a couple obnoxious behaviors and repeating phrases. i gave him some this am to hopefully help with school anxiety. he got in the car okay and i carried him out. he walked into the building but then tried to grab at me. i had to just leave. i gave it to him but felt it was just kind of a 'grasping at straws' b/c i was worried about the school anxiety. i know it's supposed to help the brain inflammation but i'd appreciate if anyone could tell me what you see that makes you think it's working. thanks.

Thanks Diana for your work on an e-mail list and helping us to get our stories to Dr. Swedo. We are working with quite a different protocol and our story is not at this time in records with Latimer, or Dr. K so I really appreciate that we'll have some way of recording also! I also echo what someone said about Beth Maloney (perhaps Vicki ?) -- I have very different expectations about Beth as A - the mother to Sammy and author of her book promoting her story, thoughts, mission about PANDAS, and B - the national spokesperson for an organizaiton named The PANDAS Foundation. These seem to be a bit blurred now and I believe they are hugely different places to speak from.

looking for opinions -- looking for the best way to draw the line on behaviors that are pandas-related but also need to get over them for future best functioning. my son - 5- had been doing great. unfortunately, we had a perfect storm in the past few weeks. we changed his homeopathic protocol b/c that is what the plan was. about a week-ish later, he got the flu. still don't know if that was b/c of medicine change or in spite of it - i think it's all coincidental that everything happens at once. have seen some exacerbation of behaviors - not too bad. he seems to be pulling out of it now. we go to the dr tomorrow. one of his biggest issues is separation anxiety/phobia of new or different situations. today, he didn't want to go to church (very fun program, usually likes) b/c i usually go but i was staying home today to do work(i do transcription from home). he just couldn't make it to go with brother and father. we suggested papa stay in the room with him - still didn't go for it. delay getting dressed/fought leaving house/fought buckle seat belt - much crying/screaming. i am concerned b/c school is tomorrow after a full week of vacation plus 3 days prior that he missed from flu. he's saying today that he doesn't want to go to school. i do think he's improving health-wise, but not back to where he was prior to flu. i tend to get uptight in how much to 'allow' the anxiety b/c i don't want it to spiral out of control. after this morning, i'm tempted to say b/c he has dr appt tomorrow, we could have a few more days out and see if he improves but am also scared that this first day staying out will morph into weeks of refusing school. the school can be helpful but they don't really get pandas. they look at it that if he choses to cry in the corner all day, that's his choice and he can also choose to participate. i know i don't want him crying in the corner b/c i don't think it's his defiant, obnoxious choice, i think it's anxiety based. i cannot do small steps with them such as 1 hour/day - they want an all or nothing. psych suggested going last hour if troublesome - they may go for that b/c psych recommended but that would be some back and forth discussions - doesn't help me with tomorrow. he's not in full exacerbation that i would think 'all bets are off, he's sick' but i am willing to give him leeway but am worried too much rope will hang us both. how do you determine where to draw the line?

we did use keflex and it worked well. at the time, i thought he had a penicillin allergy - i believe that's why they chose keflex - now, after clarification, i just know he's twice reacted to some abx but believe it to be omnicef and amoxicillin. i don't know the differences and advantages/disadvantages of all the abx - only that we've seen results with keflex. april 2006, 22 months old - first confirmed strep - vomiting once only symptom - brother had strep with only symptom whitehead acne-like breakout on face...zithromax - never confirmed strep was eradicated - now question if it wasn't and this started it all. june 2007 - ped appt for potty phobia when initial train, holding urine, threw up. ped thought his throat looked like strep - rapid and culture neg oct 2008 - pandas behaviors surface jan 2009 - 5 days azith - horrible ramp-up of all pandas behaviors - better after off azith - feb 2009 - change ped - 35 day keflex - after 3 days 100% return to pre-pandas may 2009 - relapse - again 30 days keflex - good results but not total remission; we started with less dose than first time, upped it after about 1 weeks, saw improvements i have such trouble understanding the "carrier state". there was a post here a while ago that said something about the benign state not being so benign - i think i really believe that. in feb 2009, both initial ped and naturopath wanted to just shrug their shoulders and write him off as a carrier. i just knew this couldn't possibly sound right.

faith - thanks for that in-depth report - very interesting! and the explaination of milk-maid grip - i had been thinking it was more like a tic like milking a cow! so - am i understanding correctly that dr T is helpful b/c he is on the same page that this is a disorder and gives credence to parents in what they say and has treatment plans and protocols that he follows but those plans and protocols are similar to what others have found that have helpful, understanding, in-tune drs rather than him having a different treatment protocol? thanks and happy thanksgiving to all!

i think those statements are key. it is so hard to understand unless you live it. i don't really think i would have been able to comprehend it before i've lived it in my own home. our families are aware of pandas but don't really understand or put in much effort to know about it. friends seem to be more understanding and willing to learn what i'm talking about. i can't remember how old your son is. mine is still only 5 and i usually just pull him out of the situation rather than explaining to others. not necessarily as a discipline - just get him out of a situation i don't see as good.

just wanted to give my thoughts on food allergies and strep . . . not sure what type of allergies and reactions your son is having. last year when trying to figure things out, we were seeing a naturopath who ran an igg food sensitivity panel. it came back highly reactive to over 15 foods - enough that she, who runs that test often, was a little freaked out looking at it. we took him off all those foods and he still is(since Feb). we've had 2 traditional allergists tell us that they don't put any value in that test - they agree that his immune system is producing antibodies to those foods but "so what". i think it's all related. he didn't have any digestive trouble before or after - although i did realize once we took him off milk, that he hadn't been drinking it. i don't see a difference in behavior - he's had exacerbations even while eating gf/df. there was a post on here recently discussing the possibility of an enzyme in the gut that is esssential in digesting gluten and casein that is thought to also bind with strep. there is the possibility that he is celiac and that is the trouble or that he will always have trouble with those foods. i don't think so - i just feel that it is that his body has been thrown into turmoil by the strep and the food issues aren't the root cause but a manifestation of the trouble with strep. once tested for strep, his ASO was 898 and he had a positive throat culture. he had no symptoms. if we hadn't caught it at that time, we may also have said he hadn't had a history of strep for over 2.5 years.

could the dishwasher sanitize toothbrushes too?

isabel - when i read your posts, i so remember back in Feb when i was trying to walk a similar line btwn conventional med and alternative -- chain drinking coffee while back and forth talking to ped, naturopath, my husband, my mom. has he been on the same abx since july? azith was horrible for my son but when he got on keflex, he returned to 100% in 3 days. there seem to be many stories - saving sammy, worried dad - that weren't seeing results with abx but a change or increase really made a difference. lyme can make it difficult to kick infections. i have a friend who has 3 kids all diagnosed with lyme - only the oldest had symptoms. let me know if you want to talk with her - she's very helpful although as obsessed with lyme as we all are with pandas. they see an integrative dr in dc and every 3-6 mths go the "the" lyme dr in connecticut. i also really urge you to go in the direction that you are leaning that you feel is best. Kathy

Dr. K mentioned the possibility of there being deposits in the Basil Ganglia.... IVIG would resolve those deposits. Wendy - glad all went well. what do you mean by the deposits in the basil ganglia?

susan so glad to hear things are going better! i'd be very interested to hear what happens with the herpes connection and treatment. did you think she had reactions to the chickenpox vaccines? so you're thinking she is having trouble with both strep and herpes? you did immunological workups to find out that connection, right? i think we've written before about that possible connection - my son had a horrible mouth rash with first pandas exacerbation and with 2nd one, the line under his mouth was the first sign. when i got dr. notes, i saw i had called thinking he was having a reaction to chickenpox vacc that i didn't remember and can't remember any details about now. kathy

do you drink coconut water yourself? i first tried some from our regular grocery store and it was terrible. there's another brand at whole foods that is really good but i think it may have some other ingredients - maybe lemon or lime ? i can find out the name of the good one if you need. i know with my kids, i've usually only got one shot for them to try something new.

please excuse my ignorance as i don't know anything about kawasaki's. SFmom - i think you and i recently posted about pandas, rf, sc, and kawasaki's all being on one spectrum - yes? would you think it matters to deferentiate other than for terms of getting a certain diagnosis for treatment? are there things we need to know about one vs. another in terms of other body system involvement dangers or is it all part of the same goal of getting rid of the strep and healing the body? thanks, Kathy

just remembered this b/c he just did it to me but was totally accidental... when he was young and would be upset - i seem to think like when he'd wake up in the middle of the night - he'd fling his head back into mine. he'd be wanting me to hold him, not trying to get away. it wasn't really wild flinging but a push back. a couple of times, I thought he could have seriously broken my nose. my nephew did this too.

this is very interesting . . . things i notice in my son during exacerbation that are different than his normal demeanor. he usually uses nice manners and if he doesn't, does when i remind him. during exacerbation, he very much resists simple manners. i believe my nephew has undiagnosed pandas. a few years ago, when he was at my house, i wouldn't give him something b/c he wasn't using nice manners - he finally decided he wanted it badly enough and asked with manners - then he said under his breath "i hate that word" about please. other times, he would look at me and shout "thirsty". it was so ridiculous. now i think it's pandas related.

Susan my son's first pandas episode was oct/nov 2008 - age 4 years, 5 months. he had a documented strep infection at 22 months. he was only tested at that time for strep b/c his brother had a positive rapid the day before. the next day, he vomited and was positive on the rapid. had we not had the test for my older son, we wouldn't have even thought strep. my older son didn't have typical symptoms - just a whitehead acne like breakout on his face for 2 mornings that dissipated but didn't totally go away as the day went on. was it a strange strain of strep? does this show they have strange reactions to strep? both boys were on abx and had no other symptoms. since he was only 2 and 3, most of his behavior was age-appropriate - although i would say he was 'more tantrum prone' than your average kid - not anything we couldn't handle or really out of the realm of a 2 year old. occasionally, he'd have a strange issue - not more than once every 6 months or year. one was when my dad was watching him and he refused to get into his car to go to lunch without me. another was when he freaked out b/c he wasn't cooperating to get ready to leave my moms and i picked him up and brought him to the car - he was freaking out that he didn't put his shoes on in the house - something that was extreme during pandas episode. he'd have quick reactions to things and he's always had a stronger than age attention span and what we called a 'puzzle mind' - i used to joke that he was my 'bipolar genius'. we thought all this was just aspects of his personality - (and still could be). he seemed to have 'sensory overload' at large events like the circus or sports events - didn't need to leave but would just sit back and take it all in. about 1 year, 3 mths after that strep, we tried to potty train, right around 3rd birthday. this developed into extreme potty phobia that wasn't overcome for 2 years. for about 2 weeks after 'potty training in 1/2 day', he was holding pee for 10-12 hours and then one morning threw up. i took him to ped, she thought his throat looked like strep, but was neg on rapid and culture. no other symptoms or strange behaviors except could not get over this potty phobia. about 3 months later was start of preschool. he took a long time to warm up, maybe 1-2 months - spent much time near the fish tank watching. wasn't unhappy but didn't so much participate - preferred to watch others. then got over and was fine in the class. 2 years after that strep - possibly new infection, old one still around - ? , approx age 3, 10 mths - had some sinus congestion and eye pain. dr didn't find anything. when had sinus CT almost a year later, at age 4, 8 mths - all 6 sinus cavities infected, ASO titers of 898. ped said could very well have been start of infection almost a year earlier and had been hanging around. i can't remember when it started but he would occasionally throw up at the drop of a hat and/or run a fever w/o other symptoms that would go away rapidly - but generally was healthy . i had thought it was just how his body handled whatever he was exposed to. he would get more tired that your average kid - 2 naps until age 3 - not lethargic or at the time seemed troublesome, just liked to sleep more than an average kid. now i think it's all related - did he ever really kick that initial strep? was it festering for 2+ years? was it latent strep that reared every now and then? i kind of got on a ramble there - it's so hard b/c so much can be explained as just a little out of normal realm for a 2-3 year old. i'd try to think if there was anything that you now know is pandas that showed up before you did know - (like when i said he needed to put his shoes on in the house - that had been an isolated incident until it was extreme with pandas episode) please let me know what dr T says about this concept.

did you try e-mailing Beth Maloney? regardless of other thoughts about her ideas/thoughts on diagnosis and treatment - i think augmentin is what she really knows. she is swamped but did get back to me via e-mail with short answers twice yesterday.

Isabel - what have you decided to do? after your post the other day, i was remembering when i was trying to walk the line between our ped and our naturopath. we'd just switched ped b/c the initial was so unhelpful. he'd been on 5 days of azith which was horrible. both the previous ped and naturopath were ready to write him off as a "carrier" - ped saying all was over and naturopath saying we had to work on his gut and more abx would make it worse. new ped wanted 30 days of keflex and sinus CT (which ended up showing all 6 cavities infected). i remember all day back and forth on the phone with the ped, the naturopath, my husband and my mom. i don't smoke but i was chain-drinking coffe mochas - only serving to make me more high strung. i really felt we hadn't addressed the strep enough - we went with the new ped and keflex and in 3 days he was back to pre-pandas self. it is so hard but if there's something leading you in one direction, i say go with that.

EAMom and others familiar with cunningham test -- i know it's not fully a diagnostic test but is that what you're primarily using it for? when i heard of it in Aug/Sept, my son was not in exacerbation so i decided not to do it at that time b/c of the $ and didn't seem 'necessary'. he had sudden onset(although occasional things in the years before that i think are related), high titers and + throat culture. he fits all the criteria that they typically have used in studies. our plan B if he spirals downward would be to go to dr. L. i've thought it would be something we'd do then if necessary. although it would certainly be interesting to see the numbers, would there be any other reason to do it if i firmly believe he has pandas? thanks.

so - we finish a tapering of my son's homeopathic remedies last week and began a new maintenance one this week. he was great over the weekend. mon - seemed tired after school but perked up to go out to dinner and was fine. tues - teacher said he had trouble choosing what to do and staying focused, seemed tired. wed - fever, stomach hurt, vomiting, lethargic. thurs - much better, recovery day from flu or whatever, no real pandas symptoms. i've spent much time going back and forth on whether we switched remedies too soon vs just a flu vs is he more susceptible b/c changes, etc. . . this morning - didn't wake right away so we decided to just let him sleep and miss school. woke 5 min later very perky. upset over breakfast b/c he was dawdling getting ready so his brother was eating w/o him - common upset just to varying degrees. didn't want to go to school for varying reasons - still didn't feel good(looks great), stomach not good, can't go b/c last day of the week, only wants to go on days he has soccer practice, etc - grasping at straws. school avoidance was a huge issue last year - his anxiety very much takes shape of avoidance - i think i'm overly uptight to not let it start. my husband was bringing them - he's grabbing my neck saying wants to be with me all day - trying to decide on the fly if this is exacerbation separation anxiety vs. 'normal' anxiety over being out a few days. my husband takes his shoes and coat in hand, carrying him yelling and kicking outside. as they go outside, there's 2 cop cars at house across the street (i've heard it's in foreclosure..?..). houses are close together and car parked on the street so it's very obvious there's a problem. i guess they weren't too concerned with us or were focused on their primary mission b/c they didn't say anything to us - maybe noted us for child services. police are not in my neighborhood often so many/all take notice if they are. i'm just not sure anyone realizes they were a separate issue from us attempting to get screaming, kicking wild boy into the car! somehow i actually was able to see the humor in it.

i'd ask your neurologist if there could be a connection with migraine headaches or occular migraines. there have been some posts on here about people trying to see if there is a connection with pandas - such as those prone to migraines may also be prone to pandas. i get migraines with aura - strange neurological problems that then go away. sometimes i feel a little funny and if i look at a person's face i'll know it's a migraine b/c i can't see the 3D of the face properly. i can also test it by looking at a page of written words - the words jump around or some appear blocked and i can't read it properly. i also get sun blind spots and zigzags that look like snow on a TV. could certainly be an increase in med but if you're already seeing a neurologist, could be something to ask about. the coming quickly and then leaving - my migraines vary in time and severity - but sometimes i may have a visual symptom for 15 minutes and then it's gone.

my son has anxiety issues as a big part of his pandas presentation. it's been mostly situational anxiety with school phobia and potty phobia. a fully year before pandas presentation, he had potty phobia when we tried to potty train him. it was so frustrating b/c no one could give us any help b/c no one would listen to me that it was like a phobia not a power struggle. this past summer - 2 years after potty training - in sheer frustration b/c the 3rd professional we'd consulted was useless - i found anxietybc.com on the web. not sure why i'd never found it before. i think they have very helpful info and they're very responsive in e-mail. we were able to conquer the potty phobia with 73 days of a desensitization program from that website. good luck.

Isabel - i know it is so hard when you are trying to get it right especially after seeking help from so many people and when they have varying ideas about what is best. i think you've done a great job in seeking opinions,covering many bases and learning options. i would really encourage you to listen to your own inner voice and follow the treatment options and drs leading them that make the most sense to you as to what is best for your son and your family. through just knowing you in your posts, i have much confidence that you are a smart, dedicated mom! i didn't feel our first naturopathic dr gave enough credence to the fact that the strep was the root cause of other presentations of problems. she wanted to work on healing his gut and letting his immune system heal his body. i just couldn't get on board with this b/c i thought we needed to address the strep stronger. through a few 'chance' conversations and some info on this board, i feel a good path of treatment has unfolded for us. trust yourself to place your trust in who you believe makes sense.

my son is younger - 5 and kindergarten - for him the issue is more that's he's there and interacting well than the pressure from higher grades. he's reading well and 'gets' math so i don't have those concerns - yet? on some days that i might be unsure about him and definitely last year, the relief i feel when i pick him up is unreal- one day i just cried and cried on the drive home as a release b/c he was with me and i wasn't worried about what was going on. i think you should factor in your stress/thoughts/fears about him there too. from memory so correct me if wrong - for Saving Sammy, i believe he basically missed 6 & 7th grades and the goal for 8th was to show up. he still went on to go to the math boarding school in maine where they thought his mind was exceptional. he's now a freshman at carnegie-mellon, yes? i live in Annapolis, MD - there's a liberal college here called St. Johns and they seriously read books and discuss them as the entire curriculum. there's all types of education!