smartyjones

thanks mom. you're always so helpful! sorry amjoy -- are you saying 18 billion units per day or 18 X 3 ? the jarrow is what we have and it's 5 billion per capsule.

anyone know anything about chloroxygen? i'm looking at it to increase oxygen in red blood cells -- specifically for endurance for ds9. he's having trouble even running around the baseball field. we watched a show on climbing Denali the other night -- of course, not at all to that degree, but it made me think of him -- he's like the cheerios kid running around the field -- showing my age, huh? thanks. http://www.herbsetc....loro_bro_07.pdf

dh is on a abx. he usuallly does take probiotics but i want him to switch b/c abx is 3x/day. what dosage of s. boulardii should he take while on abx? thanks.

did you post on the lyme board? you may get more of a response on that.

jen -- what you describe is very much like my ds. he had many issues with cognitive inflexibility and just right OCD. it took me some time to understand "just right OCD". he's doing much better with these issues as he's healing. i'm sorry that you are seeing these issues in a child other than your pandas child. i don't write this to upset you -- just to let you know these are two of my pandas child's major issues. my older son started showing symptoms in the fall. they were quite mild -- i really think a non-pandas parent would have written off as a phase. we hemmed and hawed and went back and forth. i remember once sayng to dh -- what, are we just waiting for him to fall apart to go to the dr. shortly after i said that, he started with severe 'bad thoughts' at bedtime. the dr diagnosed multiple infections. he's responding well to treatment. i think there is more evidence coming in that once you've got one pandas, you've got to take symptoms to heart in another. good luck.

s&s -- it sounds like you could be on to something identifying the triggers. my ds used to -- and still occasionally -- does something like this. yes, it's difficult when your adrenaline kicks in too b/c you're envisioning him running right in front of a car. my ds had something wrapped up with his brother -- needing to be right near him or not hold my hand if brother wasn't. we've seen other things relating to his brother. i now think it's some OCD thoughts wrapped up in protecting his brother. that's why it's so charged b/c i really think he truly feels something terrible is going to happen to brother if whatever is not complied with -- i.e. him right next to him, him not holding my hand if brother isn't. i'm not sure what to make of the only with you if there's OCD thoughts -- it could be that it's not a conscious trying to hold it together but that the thoughts only surface with you b/c of some reason. like she is more relaxed and safe so her brain is open to the thoughts where other times, she is focused on behaving etc and the brain can't allow the OCD thoughts. i'd wonder what meg's mom would have to say about OCD thoughts surfacing or not at various times -- ? maybe it's not reallly the behavior but that she is only in certain situations that trigger the OCD with you and not at school or with other people. if she was in that same situation with them, maybe she actually would have the same reaction. i don't know -- just some thoughts. are you familiar with The Explosive Child book? i love the technique of repeating to help calm a wild situation and during a calm time to help try to uncover what they could be thinking.

susan -- are you familiar with 'ice pick headaches'? google it and see if that describes it. i am quite sure it can be a bartonella symptom but not positive. i began getting migraine headaches around age 11 until 18. they went away for an extended time but came back after my first pregnancy. about 5 years ago, i had a variety of symptoms -- i now believe to be TBI related. one was intense quick headaches as if someone was driving an ice pick into my head. i seem to remember mine were on the top of my head. they stopped when i got off the pill. i do think there was a hormonal relationship but am thinking more along the lines of screwy hormones due to TBI that the pill exacerbated. while being treated, i've been having various forms of migraines but not those again.

i tried again to find it but couldn't. i know it was a mention of sniffing an essential oil for calming. it was not lavendar. anyone?

ds9 is 2 months into treatment for multiple infections. we've seen some good results -- no more getting up to pee in middle of night, close to cessation of "bad thoughts" at bedtime, no more complaints of upset stomach, no more ankle pain complaints. i believe this is somehow related as a negative -- i've spoken with dr, he's not worried, just thinks something in the process--did give us something that may help. but i need some advice/ideas for coping. his attention level is horrible. previous, he's been probably an average young boy that can get distracted, but not really to abnormal levels. now, it's really ridiculous. he can now really only focus on reading. which i do realize is good he can at least do that. however, yesterday was troublesome as i was trying to get him to do some work. ds6, pandas, only needs a sliver to get him distracted, so i've got both of them doing basically nothing. we just had our conference -- our state requires proof of 'regular instruction' --of which, we had plenty. we'd have none from the past week or two. i realize it's really more my coping problem than his. yesterday was much arguing. once he finally got into a task, he did really enjoy it. today was ice-skating in the am. they are now out playing football. he's done much reading but i haven't asked for anything else. he's bright -- just qualified for a young talented program from a local college. perhaps that's adding to my stress that i feel i am failing him. should i just allow him to read all day? should we just plan some field trips? do i push him to get started b/c he does get into it when he finally does --( but it is at a price)?

hmm - ds9 is being treated for everything. he occasionally gets about 6 small red round spots, not raised over his right eyebrow. sometimes if angry or upset but not always. i can't remember when it started. i wrote up a history for the first dr visit and had it in the 'general' category -- not 1 mth, recent or 6 mths ago. does anyone know what it indicates? i guess i know the infections he's being treated for so do i just assume it's related and see if it resolves?

S&S -- i didn't know there was a cheek test -- i thought it was only blood or biopsy. did you need a dr's signature? did insurance cover? thanks.

grace -- what are blood freckles?

kara -- as with everyone else, i am so heartbroken to hear of your dd's decline. it is tough but i have to believe you will get to the bottom of it. -- as we all will. have you used the repeating technique from The Explosive Child? i originally used this for explosions but have also found it useful in trying to understand what's happening and reach solutions. maybe it could help lead you to some ways to help her find somewhere acceptable to sleep and function while you are waiting for test results for future direction. basically, you start by just repeating what she has said. i.e. - if you suggest somewhere she could sleep -- blankets on the floor. she says, 'no, they're too dirty." you, "too dirty." at first, try to keep your voice flat and emotionless. when you do it more, you can use inflections to help -- surprise, humor etc., at first, it's best to stay flat. after a few repeats, see if you can throw in a "why" to lead to some insight to help find some solution. you can keep suggesting new things but keep repeating what she's said. you can add, "really?!", "you think?". you're not trying to convince her she's wrong or reassure her but you're also not agreeing with her, you're just stating what she's said. for my ds, it is really helpful that he lets his guard down and doesn't feel he has to keep his feet entrenched in the sand defending his point. we've gotten to the point with ds that he can say "there's no reason", "there is a reason." most often, it's "no reason". that gives me a jumping point, "well, if there's no reason, how about if we try ___". then , i repeat and we try to work to something. it doesn't always work but often does. good luck. hoping for a quick resolution for you.

have you checked out anxietybc.com? you may find some suggestions there.

interesting -- seems to be much irish -- having grown up with a father with a "irish temper" (who also seems to have narcolepsy), i have wondered in the past if that characteristic could be some genetic pre-determination that is really afflicted fight or flight symptom.

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so Jill -- what did they tell you to do based on that SPECT scan? that that was the way her brain was and nothing to do about it? try to regulate with SSRIs? have you ever or do you plan on another SPECT? Adam -- thanks for posting. i had not heard of Dr. Chugani and am very interested in what you have to say.

My child has: Lyme Chronic infection -- toxoplasma gondii; CMV Chronic Strep Significant Immune Deficiency No known current infections What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) -- last exacerbation over a year ago due to flu; general up and down since -- currently about 90%-ish; odd 100% remission with stomach flu -- short term has happened two times If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? What symptom group would you put your child in: tics only ocd only -- possibly some tics that are more compulsions than overt tics tics first, and ocd came later ocd first, tics came later completely balanced How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-5 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10 10+ List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.potty talk, control of sibling, poor cooperation, decisions are monumental; blaming others; sound sensitivity, loud talking, cognitive inflexibilty; 'Asperger-like' social behaviors, trouble with the potty and with bathing What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. integrative MD who does a form of ART and homeopathy; just recently testing negative to strep; currently having troubling kicking CMV this could only be due to the subjective way that we all rate symptoms and behaviors - but i am surprised in the responses that there is only one other person - kayanne, i think - ? -- that rates 10+ symptoms. could the number of troublesome behaviors mean something. of course, maybe i separate out behaviors that other people lump together and that would explain it. from the time i've been reading this forum, there does seem to be 'groupings' of symptoms and i've got to think that means something. norcal -- i do think this is such a quandry to determine the cause and when to stop looking;. i posed this question to Dr. T awhile ago -- on this forum -- we had clear strep indicators -- ASO of 898 and positive culture at onset, 100% remission when found the right abx. however, when off the abx, he relapsed. Dr T answered that you can always do more testing -- however, it's expensive and may yield false negs and pos, so yeah -- where do you draw that line of enough testing? we did go searching further when ds was not really moving in a healing direction. we found lyme, toxoplasma gondii and CMV -- along with other troubles due to that -- low serotonin, lead, fungal, parasites. could longer, stronger abx have corrected some of the infections? we haven't done IVIG or PEX. would one of those have helped his system correct the other infections or other troubles? did the other infections cause trouble or were they just in the barrel to help it overflow? SO MANY unknowns!! i do currently think the CMV is a problem b/c that's all he's currently testing for and he's still not 100%. i'd say his issues now are controlling of his brother, blaming others and irrational upsets. would some of the others be more related to lyme or strep and we don't see them now w/o those infections? so many questions.

both of my kids do show high titers and it has been helpful in diagnosing, so while i certainly understand those who have found trouble due to low titers, in our personal case, they have been helpful. however, we have not "treated" for the high titers. it has been a piece of the diagnostic picture. a behavior therapist suggested pandas for ds6 -- after "developmental ped" suggested SSRI as a FIRST STEP for a 4 1/2 year old exhibiting sudden onset. i do have respect for personal decisions for SSRIs but i still marvel at how this could have been a good suggestion of a first step with sudden onset. after elevated titers, they did a culture, which was positive. after a few missteps, he had initial 100% remission on keflex. ds9, this fall exhibited behaviors that most non-pandas parents would classify as a phase and not really be worried. a few months before, he'd had a slight sinus thing with some green gunk. ASO was normal range, anti dnaseB was high. behaviors intensified a few months later with nighttime peeing and 'bad thoughts' at bedtime. i think while titers are often troublesome, for some, they can be a helpful addition to the diagnostic picture.

priscilla -- sorry to hear about your bite but at least you know you got it, right? i am no expert on TBI rashes but. . . i went to my ds's integrative MD. he does a form of ART testing and diagnosed me with lyme, bartonella and babesia. i started a homeopathic protocol. the first few weeks, i felt like a truck hit me in the afternoons. after about 4 mths, i got a small typical bartonella rash on my upper leg. it lasted less than a week. it was the small stretch mark dot line rash -- no itching -- no feeling at all actually. probably around this time, i had the sensational of itching on my inner elbow at nighttime. after a few weeks, a bumpy rash came out on that inner elbow that at times could be very itchy. i couldn't find any info other than the typical stretch mark type rash about bartonella. my dr did believe this was due to treatment for TBI. it lasted a long time -- 4-5 weeks. went away and then came back quickly. it is just now going away again after 3-4 weeks.

hi malke and texas. i fully understand where you are with the desire to treat naturally. ds is following a bit of a different path than most on this forum so i'll give you my thoughts. we are seeing an integrative MD who uses homeopathy. my overriding thought is that it is important to have a knowledgable voice that you are following. of course, with pandas, it is hard to know what is that best knowledgable voice. i just think it is very hard if you are trying to do it yourself. it's hard enough that we have to be advocates, researchers, deciders, etc -- but doubly if you are trying to be the be all, end all. i am quite confident with what we are doing, yet still question when i hear things -- i.e. should ds be in IVIG study, etc. when ds first presented, we saw our traditional ped -- who was fairly useless. a behavioral therapist suggested pandas and he had high titers and positive culture. a 5 day course of azith was horrible (possible herx from lyme - ?). we switched peds, sinus CT showed all cavities infected, 30 days keflex/nystatin = about 3 days 100% remission. at this time, we were also seeing a naturopathic dr. she ran an IGG that showed severe reaction to over 15 foods. she didn't fight me on the initial azith but used the fact that that was so horrible to fight me on the keflex. she thought the food reactions were causing the trouble and not allowing his body to fight infections. i thought he needed more help to fight the infections --that she wasn't giving enough weight to the infections being a source of trouble. we parted ways with her. he relapsed after about 30 days off keflex. went back on -- saw improvement but not the dramatic reversal of before. our ped was slightly familiar with pandas but not so much with treatment methods. he thought we'd hit the strep hard and it shouldn't still be there necessitating more abx. i went searching for natural options. we found pleo sanum homeopathy and i found a practitioner who used them and did cranial sacral therapy (he's an PT and ND). we saw some improvement - but again, not 100%. ds relapsed with a flu and took a long time to pull out of it. i thought about 4 mths -- during that time, seemed okay at school, not at home. then improvement -- or so i thought -- it just switched. he was now okay at home, not at school. i then asked dr if we should revisit lyme (previous western blot was completely non-reactive). he referred us to our current MD. this was about a year ago. current dr does a type of ART testing. he diagnosed ds with lyme, strep, toxoplasma gondii, cmv infections along with other issues --- fungus, parasite, metals. it's been an up and down year. ds has improved, regressed. he had a horrible herx-like reaction to an anti-viral in july -- classic, contamination OCD with non eating. there is no way we would have made it through that with out our professional dr's help. i guess we would have actually b/c it began and ended without real intervention -- however, psychologically, we needed support and it was helpful to have dr observing ds. dr believes that is something that would have surfaced at some time in the future if he wasn't being treated. during the fall, ds had fairly intense sensory issues. a change in meds brought changes in that. according to me, i'm not sure what i think of progress. he's not in crisis or exacerbation, but he's not 100% healthy either. according to dr, he sees much progress. it can be a long process of riding of all these infections, which is happening, it's just a long process. and, recently, he had an uptick of some behaviors and tested for the presence of CMV again. we have seen improvement when adding that remedy. he's very recently (i'm reluctant to post but can't help myself) doing quite well. may be a reverse canary effect b/c ds9 presented symtpoms in Nov/Dec and has been to same dr. we've seen improvement with him in the past few weeks which seems to correspond to ds6's time frame, too. we see dr this week. SO -- my point is -- how would i possibly have followed this type of path if trying to devise it myself. i honestly believe there's no way i could. even with trust in our dr, my head still turns when i hear something like enhansa (malke -- please keep me informed about that). for now, we are following our dr but i put those things in a file for the future and will discuss later. texas -- are you considering doing this yourself or following someone's guidance? have you considered homopathy? i beilieve stephanie2 was researching a homeopathy group in texas that sounded interesting -- ? good luck and keep us posted.

cobbie -- what do you mean thickened blood?

so EAMom -- what are you thoughts -- if the 'average' person will kick a strep infection on their own in about 2 weeks -- do you think the issue is that our kids have multiple strep infections which they do actually rid of the bacteria but it takes it toll or do you think that they have a low-level chronic strep infection that they never get rid of? i guess there's really no way to know and it doesn't really matter -- i just think i'll always wonder b/c ds had known strep at 22 months and 'sudden onset' age at 4 1/2. he was actually treated but, of course, we didn't go back to recheck. i just think i'll always wonder if he had strep brewing for 2.5 years. speaking of that -- why isn't it in the general protocol to go back for a subsequent culture after treatment?

hey eljomom -- did you ever hear anything else about that dinner? did you go back to that dr?

i'd advise you if you do go to Hopkins to go with your eyes wide open -- there is much history there and from my perspective, not too good for pandas. you could start by searching this forum - try hopkins or JHU. i think someone recently posted a good experience with Childrens - ??