smartyjones

Thanks, but it's just an Excel graph. It does present, however, the data in a way that makes it easy to see the exacerbations and trend lines. okay - i'll drop it after this -- i think smart people tend to think the rest of us couldn't possibly be as dumb as we are - trust me, we are! i've been writing notes in a book for a year and just have a cumbersome collection of papers that don't really tell me anything. thanks for the system!

i agree what you are describing sounds like compulsive activity. . . but. . . when my son first had symptoms, he had outrageous thirst. he's not much of a drinker or eater normally. he was only 4 and at times, he'd cry b/c he was so thirsty - then he'd drink down an 8 oz or more cup of water in 2 seconds - normally, he may drink 2-3 oz at a time. i was able to note this b/c his brother is a huge water drinker and i always thought the contrast was interesting. before we found pandas, we were investigating yeast - i don't know how it's all related but think it is. i believe his major trouble is pandas and strep and possibly had yeast due to the strep causing imbalance. could it have some basis in that he is truly physically hunger/thirsty? i myself love carbonated water with flavoring - be sure to check the label for nothing added but flavor - they often have sugar or HCFS.

yes! i had forgotten it but during his initial episode last fall, we often referred to dr. jeckyl or mr. hyde -- who was it today

are there particular strains you think are the most important? what about strep therm. -- do you avoid that?

WOW - when i said fabulous, i was only talking about the initial charting - i had no idea of that color-coded graph - it is truly stunning - you really should find a way to market that!

i am a huge fan of "The Explosive Child". even though i believe my son's explosiveness to have a medical cause, this book gives good tips that seem to help us get him under control. it was very helpful for me over the summer in giving me a plan of something to do to keep me from getting almost just as explosive. i also like "Freeing Your Child From Anxiety" by Tamar Chansky. as i've written here before, my son is not forthcoming in his reasons for things - now he can say if there is a reason or it's 'just because'. usually it's 'just because' something is out of order or not what he expected. i get very hung up on the lack of thoughts when reading how to help from an OCD perspective. this book has good practical solutions without delving into the reasons and thoughts. meg's mom - you've given such an extensive list - is there a way to bookmark this at the top with the other threads?

forgive if this is stupid. . . why is strep different from herpes in the sense that once you have the herpes virus, it lives in your system forever - at times rearing and causing problems and at other times existing symbiotically with your body and not causing problems. why isn't this the same for strep? i actually think it well could be but i know that is just my non-scientific, pea-brain thought.

my son had the western blot, never the ELISA. i think b/c we live in md and i asked for it and the dr. was surprised that we hadn't done that when we did his titers so he went right for the western blot. i don't really think he has lyme, i think it's more classic pandas with confirmation of high titers and + throat culture. however, i have a knowledgable friend on lyme who is planting seeds in my head and i don't want to be ignorant. i do think it is true that if you have lyme, your system is open to other infections. i wonder how much i can trust a neg test.

p.mom - you seem rather literate about lyme. would you share what you know/think about the lyme tests. my son had a lyme test - the results show igG and igM - all nonreactive. he was 12 days off keflex at the time of the test. my understanding was the trouble with the test was that people show some reaction to a few bands but are considered to not be having a problem with lyme when they really are. do you know if you can be sure of ruling out lyme with the blood tests? thanks.

We charted our daughter on 11 variables each rated 0-9. 1-3 there, but barely 4-6 meant pronounced event but not constant 7-9 meant huge impact, disabling or unable to function These were: separation anxiety social anxiety emotional lability lashing out/hitting/biting restrictive eating/skipping meals contamination fears/hallucinations demanding defiance OCD measurement rituals OCD repetitive questioning large motion movement abnormality illegible handwriting/fine motor tremor (includes dropping things/clumsiness) An exacerbation would be a jump of +15 points (typically 2 or more items going from nothing to severe). I'm not sure our cut off is useful to anyone else, but it is what we used. The rise was over 3 days and lasted typically 4 weeks. Buster i hope you don't mind Buster, but i pasted this from another post b/c it is so fabulous, i can't believe it! for a year i've struggled with keeping a log of behaviors that has the right info but is easy to read and track. i have a couple spiral books and can't access trends etc. after you wrote this, i started a chart with our specific behaviors on the left and 7 columns for the days. it is so great! on the back of the page, i'm writing details of the larger events. i started on a thurs so i've done it for 2 weeks. i can see the first week had a few days in the 20s, others in the single digits for a average of 11.85. the next week, has a couple teens and singles for an average 9.0. this is so much easier with more accurate info. thank you!

i saw a friend of mine yesterday who is a pharmacist and her kids had confirmed lyme in the past but she thinks they're still having effects. she said doxycylcine is not good for the growing bones of kids.

we use the electric ones also. i like it for me and i think it may make up for the boys' still learning brushing habits. the heads are really expensive to replace often. i've been interested in the UV sanitizer but haven't gotten one. anyone know anything about those?

i really have no good info on this, so i shouldn't even be posting it. . . but, i will and if you like, you can see if you can find any validity for it. i was recently doing some reading about lyme and there seems to be a theory that the insomnia of lyme is related to herpes virus. valtrex was suggested as a trial. i think someone (suzan - ?) uses valtrex, correct? maybe there is a strep-herpes relationship too. i've wondered b/c my son had a horrible mouth rash with 1st episode that i wonder if was herpes related. also there is some speculation about chicken pox vacc and pandas. again, i have nothing to back up anything and no experience with this - but just thought i'd throw it out there as something to investigate.

oh faith - i do not envy you - what to do? please realize what a good mom you are and have been and what a good job you are doing looking after your son!!! i know you've gone the naturopathic way searching for answers. you might be interested in this. a friend of mine's kids and she have lyme. there are many overlapping symptoms for lyme and pandas so i think she's always trying to get me to consider lyme. my son did have the traditional lyme test and was neg on all bands. however, many lyme experts don't consider the traditional test as the most valid. anyway - i was doing some research on lyme and found some comments from an integrative dr i've done some reading on. first of interest, he stated that strep is often present in lyme patients. i believe this to be b/c lyme patients often have trouble kicking infections. not trying to suggest lyme for your son - can't remember what you've done on this front. long story longer - the point is that he said it is important to look at the tonsils, if they are scarred or have excess lymph tissue, surgical intervention is needed. otherwise, he doesn't believe the patients get well. he may do something different from traditional tonsillectomy but was thinking this was an issue to be addressed. granted this article was about lyme but it was in a section about the intersection with strep and tonsils. this guy is an integrative MD, not an ND and on some tenants, may be seen as out-there but i like him. although i don't know him too much, i was still surprised to see him recommend surgical intervention with tonsils b/c although we haven't investigated it for my son, i'd generally think it's not so much an integrative/naturopathic recommendation. long story even longer -- i was surprised to see this recommendation for surgical intervention from this guy. maybe this is a step in the right direction - ? - if you do that, i'd certainly investigate biopsy to help with your questions of strep.

tantrums - you are not alone - i do think it is a form of PTSD - i get great comfort from all the other obsessed parents on this forum b/c no one else can really understand unless you've lived it day in and day out. yes - you should sit back and enjoy the health but there is something lurking in the back of your mind, often in the front, of the what if. . . i have a friend whose 3 children have lyme - one symptomatic the others only b/c they found it on a test. she is always stating "i know too much" and yes, we all know too much too. my son presented with symptoms Oct/Nov 08. we were lucky in that we found out what it was relatively quickly and he was treated with 30 days keflex in Feb. within about 3 days, he was 100% pre-pandas. a few weeks after he came off the abx, he relapsed. i was a mess - it caught me totally off guard, i think i thought he had been cured. he again refused school and never made it for the rest of the year, along with whacked-out tantrums. i was reeling b/c I wasn't expecting that and was not sure where to turn or what to do. i think the thing most helpful for my pysche has been a having a plan B, C, and D for the what if. . . we do have our plan A that we're working with now, working on healing his system. he had an exacerbation with the flu recently but it was okay with some adjustments to our current plan. however, i have an idea - although rough - of where and what we would do if we needed to. ideally, i'd consult with an expert now to have a relationship in place if we did need them. i can't remember if you saw any of them. if possible, that would be my advice. but realistically for us, i think that our $ is better spent on our current treatment plan - we are using a homeopathic protocol that is similar in theory to abx. we are also fortunate in that we have a open-minded ped who is helpful, will prescribe abx and is willing to consult with others. so that would be my advice - if possible, consult with an expert for the possible future and develop a couple plans of what you would do if you needed to.

i'm not saying this is your issue . . . but one of the red flags for us for exacerbation is when he does something which he is seemingly purposefully trying to challenge me for his amusement. it is not when he may be doing something wrapped up with other rituals like you're talking about. it's more a quick, reactive type thing. he mostly presents with obnoxious behaviors. he does have cognitive inflexibility issues which may have OCD basis and separation anxiety. so it may be that that just goes along with the territory of obnoxiousness, which i'm not sure is one of your daughter's symptoms. he's a 5-yo boy so there is some challenging to be expected but there is a different type of energy around it than just what may be 'normal'. today, at breakfast i asked him not to do something and he did it on purpose while just looking at me. i sent him away from the table and he was mad and sad. that, however, i'd term normal. the other is wound up with something different that i can't explain but i just know it's different and he did do it recently when having an exacerbation.

thanks vickie. motrin is what we use and i hadn't heard about that. Kathy

i understand that ivig is injecting 'proper' antibodies into the system. and it makes sense to me that it could be helpful. where i get confused is that it makes sense to me that you'd have to always do it at some interval to keep constant the levels of the 'proper' antibodies to keep the immune system functioning correctly. how does injecting good antibodies 'retrain' the immune system? is that based on anecdotal evidence that people have had it done and seen long-lasting results? is it that the whole pandas antibody reaction is like gunk in the system and the IVIG cleans out the gunk? so all would be fine until and unless the gunk came back? and then are you back at square one with the same antibody reaction that you need to clean out again? does IVIG have anything to do with reducing swelling in the basal ganglia? does it have any effect on closing the BBB?

do you mean the strep infection? do you mean just in an adolescent or for any one with pandas?

i don't necessarily have advice for you but i will tell you our story. last year, we discovered pandas for my then 4.5 year old. a behavior therapist suggested it. pediatrician was skeptical but ran titers - very high. did throat swab - positive. they prefunctorily threw him on a 5-day course of azith - i think only to CYA b/c he'd been in that office many times and they couldn't find anything wrong. i can't remember her exact quote but something like 'this will take care of the strep, he may just be a carrier, i think you'll find the behaviors and the strep unrelatd. no need to further worry or investigate strep." that 5 days was horrible! all pandas behaviors intensified and some that had left returned. he was incredibly clingy and whiny - hiding behind my legs when my dad & stepmother were at our house who he is normally close and comfortable with. i was so happy for it to end but of course, was unsure what to do. he was better off the azith but we still needed some treatment. we switched peds, the new one put him on a 30-day course of keflex and thought he may have a sinus infection, which was confirmed with CT scan. about 3 days into that keflex, he was 100% back to pre-pandas. he then backslid when off that, but that's a different story. so, many/most have great experience with azith - we did not. i don't know why. he had previously had reactions to 2 abx, i now believe omnicef and amoxicillin - at the time of keflex, we thought it was a penicillin allergy. has your son had any adverse reaction to any med? good luck.

faith - can you remind me why you think it's not pandas - or why you're unsure. when i read what you write, of course i'm no expert but it sounds like pandas to me. he had high cunningham #s, didn't he? kathy

the naturopath who originally did the test was afraid he could be celiac. we had a non-helpful pediatrician at the time and i couldn't do the celiac test before we took him off the grains. unfortunately too, we started the 30-days of keflex about a week later. so we've never had him tested for celiac - something we'll have to do in the future but i'm still not ready to put him back on the foods b/c i don't think he's 100% yet and he had an exacerbation in the past few months. i've read that if you react to many foods, it may more be a sign of leaky gut than necessarily celiac. i think his trouble with strep has caused a cascade of other trouble. although i now see things that could have been pandas earlier, he still had quite a sudden onset. i think if it was celiac, it wouldn't have been so sudden. celiac is something we will test for but i don't think it's that. i believe the food issues are a symptom of the strep/pandas medical troubles. his symptoms improved but i attribute that to the keflex and he spiraled down when he went off that first course while still avoiding those foods. he is still avoiding them and has seen improvements on our treatment and exacerbation due to the flu. if the foods were a bigger cause, i don't think it would be so variable. i keep him on this diet b/c i do think for him at this time, it is a tax on his immune system that is obviously out of whack. so, i believe the strep to be the cause. there was a post on here a while ago of an article that mentioned some study that there is an enzyme in the gut instrumental in digesting gluten that binds with strep. i think there's something like that going on. when we do see recovery from pandas, we'll have to add the foods and test but i'm hopeful that it won't be a life-long digestive issue - i think it's all related to the pandas. i think it's a combination of taking him off those foods and treating for strep that helped him to gain weight. he had strep 2.5 years before the behaviors and i think he probably never really kicked that initial infection, which he had at 22 months. p.mom wrote that her kids are not thin. when do you think they got the initial strep? i wonder if that has something to do with it - the age on initial strep - maybe in the development of growth, digestion, something?

i know it is hard and extreme. . . but having gone gluten-free, egg-free, dairy-free 'cold turkey' - i would say that's the best way to do it. that first month is a blur and my kids ate many boxes of rice chex b/c they were carb-aholics before but you do get used to it and find ways to work with it. good luck!

don't know what it's worth for you . . . between 18 mths and 4 years, my son gained 10 lbs. had confirmed strep at 22 months. in his 4th year, overt pandas symptoms and treatment at 4.5 plus had food igg with over 15 reactions so we took him off all dairy, eggs and most grains. during that year, he's gained about 8 lbs. so that year, he gained almost as much as the previous 3 when most kids are slowing a bit on weight gain at that age. the kids that i know that i suspect could have pandas, are on the thin/little side. i think it's got to be related.

i'm not trying to convince you that it is pandas - just to not be swayed from your path if you think it is or feel you need to discover more. my son's "official" pysch diagnosis is "anxiety - not otherwise specified". we found out it was pandas rather quickly b/c of an astute behavioral therapist. we've been to a few in the psych profession and i have to say i am very dismayed and frustrated with them. my son does not display 'typical' OCD - he doesn't really do repetitive things or have complicated webs of thoughts - it may be that he is only 5 and that type of thing would come out later - he more presents with obnoxious behaviors and cognitive inflexibility. there are so many stories of what drs. 'in the know' have told people. we didn't see Harvey Singer at JHU but were basically told by his asst. that he'd probably refer us back to the psych. the colleague that referred us to him, spoke of pandas as "a pet project" of his for the past many years and really thought he'd be able to help us. it is extremely frustrating but i'd say most important to follow your instincts and don't be swayed.