norcalmom

bronxmom- yes...i did pay out of pocket ,just got back the denied insurance claim I am trying to fight. I don't think you are looking for a solution to a phychological problem...I FIRMLY beleive it is a medical problem. The fact that he is having these strange physical reactions (like clenching ans soiling - controled in Basal Ganglia) just confirms it. Sounds like you never wait long enough to see the benefit. I'm assuming it is High Dosage - 1.5? so are u scheuled for 5 total? I am thinking ds might be one of the ones that might need another, and/or I need to get mycoplasma and lyme testing. did you have those done before hand? I think you are Dr B's patient? I wish we were closer to him - he sounds the most thorough. My DS wet his bed every night for 3? weeks after ivig. Its so weird. He wet last night - first time in 4 weeks - probably due to this cough. I'm conflicted on how to feel about it though - I now feel like the wetting is sign that there is a change coming (good or bad) because when he was wetting every nite post ivig, he was definately improving in mood and tics. BUT it was also his first sign of heading into exacerbation pre-IVIG..usually a couple days before it would start, and during exacerbation - he might do it, but not every nite. I kept him home from school yesterday - he seemed pretty good, not as bad as day before (for pandas stuff anyway). We'll see what the weekend brings.

try the 1mg dose melatonin first - that is what we use, have not needed higher (although usually in sold 3mg tabs,you can find in 1mg)

There are too many treads on probiotics to read thru to try to find htis in particular, but I thought I saw something negative posted about his one at one time. Has anyone used this one and had good/bad experieces? Dr. prescribed for my nephew...we just use combos of pearls, kefir, yogurt, chocolate bars with probiotic, and yum-yum dophilus. I believe in mixing it up, and all of those actuall taste good (excpt the pearls!) Thanks!

abx - do't effect it. But steroid or recent steroid will. You need to wait if child has taken steroids recently- I don't know how long. We did my son's NOT in exacerbation, which will lower the score, and since he was in what I considered a good place - I though he would ocme back low, or not in the range. He never had strep or high titers, so I was using it as a diagnostic tool, make sure we were in the right place. cam K - 176. (high pandas range). Same for my nephew - he was diagnosed tourettes and adhd for several years and I convinced them to take test - (not in exacerbation) 186. Ticcers usually have higher cam K IIs (can't remember where I read that). but my son wasn't ticcing at the time of the blood draw.(only in exacerbations)

Well done. Very cool site. I really like the current quotes page...I like things in 3s, I like things in 3s, I like things in 3s.

probably a factory thing. Do you do yoga or strech? I have the hip pop thing (along with ankles and other joints) - but I'm 45years old and have run several marathons (so I deserve to be in pain). You're so young for this - I'm sure its stress and/or postural thing..streching helps ALOT. Its hard to get to the correct muscles for it though, they are very deep. Below are some utube videos for psoas muscle streches. You can also do it on edge of a bed or counter that is the correct height. Just put one leg up on the counter/bed - but behind you, so knee is down on bed, and standing leg is straight. Kind of like a balarina at a barre - but the leg is going behind instead of in front. I like floor better, with front leg in lunge, and then you can move the angel of your hip around very easilty (and carefully!) just pointing your toes in a different direction will sometimes do the trick. Do it next to a bed or with a big excercise ball next to you for balance. That also helps bcs you can use it to hold onto and relax everything. Its something you can do literally for a few seconds every day, and it will make a difference. You may find that only one side is tight. http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4SUNA_enUS247US249&q=hip+strech+soaz+#q=hip+stretch+psoas&hl=en&rlz=1T4SUNA_enUS247US249&prmd=iv&source=univ&tbs=vid:1&tbo=u&ei=BNGbTIbGI4--sQPb4ojvCA&sa=X&oi=video_result_group&ct=title&resnum=7&ved=0CDUQqwQwBg&fp=fd9f310bee2047fa Good luck!

I would consult with one of the pandas specialist. Even if you are across the country. Dr. Bouboulis (CT), Dr Latimer (DC), Dr Triffetti (NJ?) or Dr K (Chicago). If you aren't near any of those, you can post the state you are in and people will tell you where they have gotten help. I also give you a link below to a list, but take it with a grain of salt. In some cases "help" means that doctor gave some antibiotics, to one pandas kid, they may not know anything about the condition or have any interest. So, post if you are interested in one of them. That might take a while to get appointment, or a phone consult. In the interum, I'd have peditrician run ASO and anti Dnase B titers (these are a blood test to see if your child has, or had strep - but they aren't that accurate, just a clue, its where people usually start). Strep is difficult to find - a culture may not uncover a strep throat. Additionally, impitego, perianal strep, strep int he sinuses, are other things your ped can look for. And although it isn't and "official" test - the Cunningham Study - if you have $400 for an out of pocket expense - I found very helpful. I have yet to see a post from a kid that has all the symptoms of pandas that did not test in the pandas range for this test. It is a study being done by Madeline Cunningham at the Universtiy of Oaklahma. She's already done two studies - published - using this test. you can opbtain it by emailing her office directly, you just need to get a lab to draw the blood for you.contact info below. The test measures the amount of anti-neuronal antibodies (antibodies that attack brain neurons) in blood. Also measures Cam Kinase II, another significant marker, indicating high anti-neuronal activity. It indicates an auto-immune condition, where antibodies confuse neuronal cells for the antigen, and attack itself. There are several illnesses that can cause anti-neuronal activity. Strep is one, Lyme disease is one, and mycoplasma is one. I think also strep pnemoniaie (walking pnemonia) another. So if your child is in the pandas range, you are now probably looking for one of those conditions, and trying ot erradicate it. So its helpful in pointing you in the right direction in trying ot diagnose your child. She may also be interested in the flu mist vaccine set your child off (your child never had ANY pandas-like symptoms before?) There are several threads posted at the top of the pandas page called "Helpful Threads". I would read them all, but the ones that might help you with yoru first steps are: http://www.latitudes...?showtopic=5023 http://www.latitudes...?showtopic=6688 for a cunningham test kit - Dr Madeline Cunningham George Lynn Cross Research Professor Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 email: kathy-Alvarez@ouhsc.edu her lab assistant email: madeleine-cunningham@ouhsc.edu http://www.oumedicine.com/body.cfm?id=4290 We saw around 10 doctors trying ot find our way thru this (I didn't have any of the information above). Unfortunately I live on the west coast, and there aren't any pandas docs nearby, so I kep trying to find my own path, eventually leading me to a trip to Chicago - where I should have started int he first palce!

wornoutmom - just reread your post (oh, that was you guys!) Sorry - I have hard time retaining the screen names and associating to their kids story. I was on that thread - sounded exactly like my panic last night! It's funny bcs, I offered u our cam K kit, and almost the next day my son starts in...and I'm like, darn. I shouldn't be so confident, things can be great one day, and the next all h$%^ breaks loose.

It woldn't be considered TS, but would be a tic. To have "TS" or, what I call it "lots of tics that we can't firgure out what causes them" you have to have at least 3 tics - at least one of those verbal, pretty consistently for a year. Tics wax, wane...and move around. So, a hand flick this time, can be come a head shake next time, or a wierd hop, or throught clearing. OR - could be a transient tic (which is VERY common). They just go away. But if your child has other pandas symptoms I'd be cautious - esspecially vilgilant for strep.

that doesn't sound good - sounds like his baseline started to creep up. Is he 100%, or 90% and climbing? The whole resaon we did ivig was bcs after every ilness, ds's baseline would creep (he'd retain a symptom, or a symptom tht he had during good times would get worse) so his overall trend was getting worse and worse. I hope you are going the other way! I'm going to go read your old posts - thank you for sharing your experience. I am calmer today. Keeping him out of school.

hi Bronxmom- Thanks for the reply. How is your son after 4 ivigs? I think the last update you made was several months ago (after ivig 2?) and he was hand clenching, ALOT. Has that resolved? Do you see symptoms come back at a certain point after each ivig (4 weeks, 6 weeks) or are periods of wellness getting longer? I hope things are well w/you.

dawn, what was the pattern after ivig with him? ds has a cough at 7 weeks post (Dr K) and has had a horribly pandas-y day. DS was progressing well up unitl this point. We did not do a lyme test prior to ivig (regrets now!) by the time all the lyme discussions were happening I was on my way to chicago. I'm glad you've uncovered the culprit - please keep us updated on how he is treated! best, k

Hi all, Has any one that has been thru ivig had a "blip" due to a virus? DS doing pretty good after IVIG almost 7 weeks ago. Until yesterday - he has come down with a minor cough (sister has sniffles). A child that we car pool with to school stayed home today - sick (haven't found out what that kids has yet, but she didn't have any cough or sniffles the day before). AGGGGH. Last night - he had a tantrum, triggered by OCD (which til this pint was slowly better!). Today after school, he told me he was "pandas-y" all day long. This was unprompted, I just said "how was school?" like I always do. He actually told me he couldn't pay attention, he had a few head tics, and he is in a horrible mood. He said this is what he felt like all last year. He's been doing so well..we've been seeing small progress every few days..not to say he didn't turn back some pages - but it was definatly different, and for the past 2 weeks - almost no mood issues at all. The cough is minor. No fever. He DID sleep last night, and didn't wet his bed (something that pre-ivig would be first sign of exacerbation). But, I also gave him a melatonin to make sure he would sleep bcs I knew he was fighting a cold! So, what do I do? He's on 500mg/day azith. We've been doing fish oil, ester C, vit D...and I gave him some oscillococcinum - and I'm wondering about THAT too - does that stimulate your immune response so you don't get as sick...in which case maybe our kids shouldn't take it? I'm going to give him some ibuprophin, but don't think he can take a steroid because he's sick. I guess I should try to get doc to give a scrip for steroid burst in case his cold goes away and his pandas stays? DS never had mycoplasma blood test - does anyone know if a ped can order that? Would it even be valid 7 weeks post ivig? Maybe kids with pitands - are ones that need more than one ivig? Should I be planning another so that they aren't so far apart, or wait and watch? I don't even really need these questions answered. I need to scream! And I need to hear from folks that went thru ivig and had a child react to a virus (not strep)..did you eventually slide backwards to where you were pre ivig, or was it a blip? I can't protect him from simple colds!

I am my son't trigger - he cannot stand to see me swallow (food, salivia, any noise - he has bionic ears) he looses it. I'm also the "safest" place to vent or fall apart. So, double whamy.I've been cultured for strep several times (sinuses too), and even did a round of anitbiotics when a while back I had the very slightest positive line on a radip strep. I was thinking of the irony - him pointing at MY THROAT and having rages. But, I don't think thats it. Its like he is simultaneously drawn to me, needs me more than ever, while being replused by me. I think a few of the kids are like that. Its so sad...and so stressful for me to be the "calming one" when usually I'm also the cause of the episode.

I personally cannot take clindimycin- sun sensitivity, at least for me meant looking like you had a severe sun burn, after 3 minutes in the sun, with sunscreen on. Only the areas exposed suffered, and if felt very weird, hard to describe. I feared damaging my skin from sun burn. So for me, not a rash. Don't know if rash could be another form of it tho.

I know EXACTLY where you are at. At a certain point in my son's illness, when my husband still didn't get it, something in me clicked. I decided I would pursue whatever I needed to regardless of cost of inconvenience to get my kid better. It wasn't even a decision that was discussed - I jsut started to make appointments and get tests without consulting him. It was toooo much stress to fight with him and justify and convince. Lets face it, most of the guys (I apologize to worrieddad and buster...and a couple of other dads that are ahead of the curve) just aren't as closely clued into the emotional shifts, changes in behavior, etc that moms are, and what is really ODD, and what is not (from watching lots of other kids, which we are around more). I listened to my husband saying "its just a phase, he'll pass through it" for a few years before my son got bad enough (a violent tic - so couldn't ignore that!) Unfortunately, there is alot of family stress until you are both on the same page. As soon as my attitude changed, my husband became the happy passenger on the pandas bus. There werent' any more arguments - it was like he sensed he better get out of my way! And - yes, my son had low titers, and so did EAmom's daughter (sorry for speaking for you eamom). Alot of kids do.

I've been thinking about treating myself with olive leaf extract, or oil or orageno...no prescription necessary!

She's had 4 HD ivs..how far apart? Seems like it SHOULDN:t be page turning.I would think at tht level of ivig (I'm guessing every 8 weeks?)her own antibodies should be pretty well surpressed. Wish I had more advice here...sorry. My only thought might be a cunningham test,to see if indeed anti-neuronals are still elevated after 4 HD ivigs, if they aren't - it might point you in another direction...if they are, you probably still have an infection somewhere.

I'm soo sorry. We are 7 weeks post ivig, and I won't even allow myself to think things are better - to have hope crushed after all that work must be agonizing for both of you... I have read that many kids (because they are certain doctors patient) are getting two and three ivig's right away, without even seeing full results of first ivig. After Lyme testing, maybe you would get more benefits from another? Even Dr K does more than one in over 20% of the cases(this is what he verbally told mein chicago), even though he generally thinks one is enough. I don't know if there is any correlation to the age, or duration of illness, to when they need another. It sounds like he still has some underlying infection or immunity issues. I just got a cunningham kit (arrived today) I'm happy to send to you if you want to check his levels, pm me and I will fed-ex to you (since regular channels take a week or two). I haven't PAID for the test, I just have the kit waiting for the day that inevitible cold/flu arrives. I wish I could help you and your son in some way. Thinking of you

Peg, I saw on another thread that ivig had finally started working for you. Could this be "page turning"? My ds had some flayed-especially bed wetting- which usually means exacerbation coming -for several weeks after ivig, but not some of the other stuff. It was wired- the usual symptoms/patterns were replaced. We are at 7 weeks now and things finally calming down. Ds was not as extreme as many posting about page turning, but the bed wetting thing was just plain weird. In the end I decided to look at it like a good sign, I knew ivig had done SOMEThIng. We had some irritability/eager times too- but it wasn't consistent and as long term as exacerbation.I've read some go thru periods for up to 12 weeks. I also think u were ding lower dose, so that may effect recovery too? Our ds had normal d1,2... High anti lysoG, high camk, but was not in exacerbation when we tested. So, possible that d1,2, go up only inexacerbatii(when his list of symptoms includes almost every pandas symptom I've ever read abiout, including urinary issues)

I'm not 100%sure, but I think zithromax is what u might be prescribed for that, so might have taken care of two bird w one stone. Maybe your doctor caught that in test results and that is why he gave u that particular antibiotic. Again, I'm not sure iof that -I would google treatment for it, but do know that azithromycin is one of the antibiotics that goes intracellular and mycoP has no cell wall, I'm pretty sure that is one of the antibiotics used to treat it.

when ds was young (before we knew he had pandas) he HATED the shower. We could get him to take a bath. When it came to hair time, we had him wear a mask (not little swimmers goggles, but a snorkle mask) he also held a dry towel over his face. while I scooped water with a large plastic measuring cup to rinse his hair. he would dunk his head (with goggles) to get wet hair wet, but wanted to rinse instead of re dunking. I thik the noise of the shower bothered him as much as the water if not more, and that is why bath worked, but as I write that I'm thinking, hey - maybe ear plugs would be helpful too? will your daughter swim? Is there a comfortable beauty salon that she might allow to wash her hair for her? sorry I can't be of more help.

try not to be overwhelmed. One step at a time. its lots of new information. there is alot of info you don't need to know about on this site - it varies by child. You don't have do, or know, everything at once. Strep tiers - done by your pediatrician (ask for something to numb your daughters arm before the blood draw, this will make the future ones easier). And the cunningham test. If you live near a pandas specialist doctor, maybe get an on the books for an appointment. After u get the kit for the cunninghams test, post again if you have any questions, we will walk u thru it! There are intructions, and most labs ask that u have the blood drawn for it in the morning so it can be fed exed (ours wanted blood drawn before 11:00am). I spent too much time being afraid of what the answers might be - it froze me. don't be me! act sooner than later, and you have a great opportunity to get her back on track with antibiotics, if she even has pandas. Personally, I was hoping for a pandas dx, I was afraid if ds didn't get one, I couldn't do anything to help him. ds had low strep titers, and the they were taken months after his first episode. first episode that I noticed, although in retrospect, he probably had one when he was 5 and 7 too. maybe if I had done something back when he was 7 I could have avoided everything he went thru when he was 11.

Seems no harm to rule out pandas. My nephew has TS diagnosis for 3 years, and ADHD for 5 or so. Things were ok, but not great. I kinda coerced them into doing a cunninghams test, first, since hunting for the strep, or the Lyme, or the mycoP may take a while. Nephew had a score if 189, very high pandas range. He is almost 14 and very excited that maybe there us something that will help him besides about a 60? Percent chance he will out grow it. He also has horrible sleep, but not significant OCD. They have seen specialists on both coasts before getting his TS dx. No mention of pandas, for some reason the neurologists sem to be far behind. They heard about pandas from me, my son was dx'd pandas(by a pandas aware doctor, who is also specialist in childhood OCD). I'd highly suggest the cunninghams test mentioned above, and getting cultures and titers for your dd. If those tests do turn something up, at least u have some simple direction to take to protect her health, rather than waiting and hoping.also, she is young, and her case does not sound incapacitating, so u have a good chance of nipping it in the bud before it gets worse. My ds had sort of sudden onset(over a couple months) and was still functional, but we could tell that with each illness his baseline would get worse. He is 11, we did ivig, 7 weeks ago, and I've had such joy the last 2 days to sit in the stands for 5 baseballgames -he's playing in a tournament-and I've nit seen one tic, or, glance into the sun, which was a compulsion we've seen him do for several months before ivig. U can find the Cunningham study info, and read the study by googling her name and molecular mimicry and pandas. Her CONTROL groups have TS, normal sera, and "regular" OCD. So it should be good test for your daughter.

Cam K took 2 weeks for us. The antineuronal numbers were about 3 weeks AFTER that.