norcalmom

i should have asked a couple other question before I started this, so if you are replying for ht first time, or would like to reply again, I should have asked: age and sex when blood was drawn. and in exacerbation or not in exacerbation, and post ivig or prior to ivig. sorry and thanks. I'm going to send M.C. an email to see if she can tell me more about the original pandas data (in exacerbation or out)..as well as when "convalescing" pandas sera was drawn, and if that means they had ivig. And of course I'm ask her what the median lyme score is...I'm sure she already has this broken out. I wonder if at the recent lyme conference she presented this number.

A year? wow. she told me I could take my son's after a few weeks...like 2 mos. and I thought Id wait 3 mos and that would be enough. there is someone on the pandas page that got me thinking about this. her daughter has cam k score of 189 after 3 (mid dose) ivig's. I dunno what mid dose means, but she was not in exacerbation, and recently had a positive PCR(?) lyme test. All of the anit neuronals are in normal range. I think she is doing the ivigs every 4 weeks, so her first ivig would have been over 3 months ago. She is switching to a high dose. I didn't ask if kids were in exacerbation for the cam score...probably should have. I was going to compare to the scores on her study - they have the sc and pandas scores broken out...but I think those draws were taken during exacerbation. I might be able to do an informal survey on the pandas board for (the difficult thing here is I only want responses from people who have tested negative for Lyme) Maybe I'll ask buster for some help - he did that big survey recently so already has a bunch of the data - camK scores were asked for, but we'd have to back out the known lyme scores. Thanks for all the replies..keep them coming! so far, looks like median cam K for lyme is 158 median pandas is 144..but I want to throw out the two lowest lyme scores (because one is a baby, and one had a recent steroid burst) and that would bring median to 164. median SC is 221. Also - cunningham didn't have lyme in different group, so if lyme is higher in general, and she had some unknown lyme patients in her pandas group, the pandas group median would drop when the lyme was taken out, creating an even bigger differential.

does he have a positive lyme diagnosis? I know you mentioned he tested positive on one test.

Just out of curiousity...do any of you have positive Cam K test results and how high were they? I'm only interested in those diagnosed with Lyme. I'm wondering if Lyme results in higher Cam K levels. Like SC does. Thanks for sharing. If I get enough results I'll compare to the pandas and SC data and let you know if there is any difference...We might not have enogh critial mass tho - I think I'd need at least 5 or 6 folks to share their CamK levels, and not sure we have enough Lyme people that have taken that test.

it seems odd that his cam K would still be so high 4 weeks after ivig, but might explain why his anti-neuronals are in the normal range. Did you do have one prior to ivig to compare to? Did you email cunningham that you have done several ivigs prior to the draw and the Cam K is still very high? I'd be very interested in if she has comments about that. How is your child doing on the lower does(?), more frequent, ivig, schedule symptom-wise?

Thank you Meg's Mom and Pricilla! All the suggestions on "getting ready" for therapy seem like good, low stress ways to start! The swallowing started with me, added my husband, and now his sister. AND, when we were back east for 2 weeks, and he was eating alot with his aunts, he statted in on her by the end of two week period. So, I fear this will keep him from having close relationships with people if not taken care of (including his MOTHER!) Pricilla, we are twins. I am from New England originally, and remember picking tics out of my head on a regualr basis, along with picking them off the dog. My sister had Lyme disease, bullseye and all, took almost a year and 3 rounds of antibiotics to kick it. That was around 12 years ago. I know EXACTLY how you feel about the word "back" -just like my son with swallowing - I am completely self concious of whenever I swallow. I look around the room. Even when he's not there. And now when/if I notice someone slerping food or gulping, I'm think ohh, that IS gross. Is your doctor doing any testing post ivig's? or will he do any after the 4th one? It sounds like our kids have similar progression, we are much better, but with a couple lingering symptoms, even tho we have only had one ivig and you have had 3. Lets see..your first one was around 3-3 1/2 months ago? so you are about a month ahead of us. Glad to hear it is working for you - please keep me updated on progess and if you run those cunningham tests again. And, yes, I agree we may need additional ivigs. I feel like we have some docs - perscibing multiple right off bat, and some that do one and wait and see (thats us) but do feel there is reason to believe that one works for alot of people. Its just so hard, becasue I don't know if by waiting longer periods (or for another exacerbation) that the benefit of the first one is wiped out (does that make sense?). I wish they could get toether and compare notes and make some recommendation..(oh wait they DID that...WHERE is that white paper!) truthfully, I doubt it will be that specific in when and how many ivigs are recommended, but I can dream. One of them MUST be looking at publishing some case studies soon.

Im freaked out by this post - and have been reading all the stuff that says the OCD persists, while the chorea stops. http://intramural.nimh.nih.gov/pdn/pubs/pub-14.pdf Is just one of the many references to this, although, most studies state that is hasn't been studied enough. An on the pet -peeve of this - even wikipedia says that syndenham chorea is self limiting, but it also says that a high percentage of SC patients have OCD...as if it is a totally separte thing! 70% is pretty high to me. Almost all the neuorlogy type papers describe only the chorea part of the disease -and that is goes away. Also interesting to note - most say SC effects females 2:1, where pandas and tourettes predom. male. Weird. also read that likely to resurface during preganacy, and saw some references to birth control pills creating episodes. http://www.labmeeting.com/paper/22864894/asbahr-1999-case-series-increased-vulnerability-to-obsessive-compulsive-symptoms-with-repeated-episodes-of-sydenham-chorea http://ajp.psychiatryonline.org/cgi/content/abstract/146/2/246 http://ajp.psychiatryonline.org/cgi/content/abstract/155/8/1122 there are more. sorry.. abstracts (no access/or time to search for free real articles), but they all seem to be similar.

I dunno about the anti-neuronals. Even the high end of the normal range is kinda abnormal for these, from what I have read. If you aren't close to the negative control, you may be very many times the "normal" they haven't really established what normal range is. Was he in exacerbation when you did the test, and how long did you wait post ivig?

didn't know that. I will investigate. Had not made any connection to the melatonin. the hyperness actually started before I started to use the melatonin regularly - like immediately after ivig. I'm talking immediately - the afternoon of the first day of ivig was probably the happiest (but in a manic way) day of his life. It was probably a couple weeks after that I decided to give him melatonin to help him settle down at night when I could see he was ramped up before bed. I think its related to the ivig, but the melatonin could be making it worse. We use the 1mg pills, which is considered low dose, but I htink I will try cutting those in half or substituting Kids Calm (no melatonin in em, and don't think these actaully work, but might be a good placebo if ds thinks he needs the melatonin on nights he can't fall asleep). Good catch - and thanks for sharing that info. I hate using pills to being with, so, another reason to back him off those.

can you test glutathihione levels?

We are 8 weeks post ivig. Big improvements. But there are two areas that seems to be "stuck". Mood, which was improving daily until he got a cold two weeks ago, and has slipped, and one OCD symptom - he can't stand to see me, his father or sister eat (but esspecially me), that has changed a little in that he used to go bonkers when I swallowed my saliva, he would be watching my throat constantly when in the same room, and I would have to turn away, or play with my hair over my neck...whatever...to disguise it. He considers it a personal affront if any of us sip a drink or put anything in our mouths when he is around. He eats in the other room. I haven't shared a meal with him in 8 months or so...and the 4 months before that, every meal was a nightmare. He went bonkers yesterday because I took a sip of juice when he was in the room ( he was on the other side of the other side of the room - sitting with his back turned, with a tutor doing some work, and I was 30 feet away in the pantry area, in the process of walking out the door to another room to enjoy my juice...). I can't live like this any longer. The people on our new baseball team probably think I have an eating disorder. During tournaments, we spend DAYS together. Share many meals..none of which I eat if DS is in the room/restaurant and can see me. But later I can be found somewhere inhaling a sandwich before I get caught! It's almost comical. I'm not close enough to any of them to share this type of information. I might tell them DS has pandas, and about the tics and a description of it in general, but nothing really specific. If they never experienced something like this themselves, they'd never get it. Maybe I'm expecting too much at 8 weeks. Maybe we need ERT or CBT to break through this one thing. I think I want to wait longer on that, becuase I think it would be very stressful for him, and I don't want more stress until I know the auto-immune part is under control, and he's ready to address the aftermath. On the upside - NO tics. NO looking into the sun compulsion (huge one! that alone was worth doing the ivig for). Mood is somewhat better (but seems stuck somewhere beneath where it was prior to that cold 2 weeks ago). MUCH better focus - school is easier. He is able to sit for long periods and do work. His handwritng is even better. I can look at the Thurdsy/Friday when he got his cold and said he felt pandas-y and hated school, life, wanted to die..and SEE in just those two days his handwritng was a mess. He has messy handwriting to begin with , so that was a hard one for us to see before - how much is pandas, how much is just his writing- but looking at two days of work - you can see if right there. Sleeping well, but I have been more liberal with the melatonin, because lack of sleep just starts this bad cycle - more likely to catch a cold, more likely to be stressed, poor mood - so even tho I don't like giving pills, this is one where I see clear benefits outweighing the risks. Not every night, probably 3 nites per week, I can kind of tell when he is going to take a while to wind down. That is actually a curious side effect to the ivig for us. I see more hyperness. He wasn't like that before. Soemtimes seems almost manic (when he is excited -happy)..He seemed to have ALOT of that (along with bed wetting) in the initial 3 weeks post ivig, its less-so now, but I think it went up post cold. He didn't need melatonin to fall a sleep before ivig, unless he was heading into exacerbation. Now I'm in wait and see mode, and its kiling me. I didn't do the lyme testing prior to ivig (do the test people! because if you don't, you will wonder) and I would like to do a steroid burst (or taper) to get back on track after the cold but can't - becasue might make things worse if he does have underlying lyme. Speaking of which, contacted a lyme specialist, and found that intial consultation is $650. Can't bring myself to shell it out. I'm going to try to get my ped to write the scrip for the IGENEX testing, and figure out on my own (with all' y'all's help) if its a clear negative - no problem, but if questionable or positive, then we'll see the lyme specialist. He doens't have any lyme symptoms other than pandas - symptoms. But he also has PITAND, and we never had high titers, or positive culture (but truthfully had suspected peri-anal strep 9 months before ever cultured, or titered.) At least I'll have some lyme testing in hand to discuss with the expert prior to the inital meeting. I hate to have to see him, and then get tested, and then see him again to discuss the test. He can't only take one test - becasue of the antibiotics he's on - I contacted IGENEX to see about that. I'm not willing to go off at the moment. There are several other tests we didn't do prior to ivig. Mycoplasma is one. Circulating immune complexes another. Can anyone think of anything else? What kind of follow-up testing do your doctors do (for those of you that did ivig)? Prior to ivig we did immune panels (igg, iga, subclasses etc..) and all the "regular" stuff immunologist would order (and gastoenterologist, and dr of integrative medicine, and allergist). Not sure if we should do those immune panels or not. He was high abnormal on a couple, not close to low enough to be considered deficient. Failed 13 of 14 penmonaie titers..don't need to redo those I don't think. I can get my local drs to do the testing I want, and even the drugs I need - antibiotics and steroids - they are pandas beleivers - but they don't know what tests to do. And even if I have a pandas expert to consult with (which is difficult, so far away, so busy, and the one we saw is much more into clinical picture than blood tests, and would not do another ivig unless a clear exacerbation was going on) I still need a local doc to wrtie the blood draw script, and perscription scrip. Got a cuningham test sitting and waiting too..DS doesn't know that on his 3 month ivig anniversay he's going to have a little trip to the lab! I want to wait 3 months, so that effects of the ivig not affecting levels, on any of the tests. So, for the next month I'll be doing the same thing I've been doing for the past 2 - reading and worrying, and contemplating and guilting myself for not doing enough research before the ivig, or taking the time to get those other few tests done. Honestly didn't know enough to know that we needed those , until a few days before our scheduled ivig - whats a couple more tests? We've done soooo many random tests ruling stuff out- the ones we know can cause high cam K should have been top priority. If even for my own peace of mind. I want to get on with my life. I want to have family dinner again.

ooops - yes, between. Tracie - we're all thinking about you and wishing for quick resolution..and for a continued success story. Hearing that she was great for 33 months, is a success story. Its so sacry, but you've been there before and know what to do and what to look for now. Please keep us updated.

I remember once reading that strep is most active in the months of October and April...I want to say most active in October. Can't remember where it came from tho.

Joan (and others) sorry you are dealing with this. my only suggestion might be earplugs. I know it sound lame, but might take the edge off your own senses to keep you sane through it. Plus, everyone else beat me to offering you the best advice and support. Earplugs got me thorugh my son's terrible twos (and threes). You can still hear with them, just not as nerve wracking. On another note from Busters questions- I know I have read that SC is self limitng, and that people with a history of SC are more likely to develop OCD later in life...and I think I seen that referenced (or some idea similar to that ) in a number of articles. I am not nearly as diligent as Buster obviously - I just read into that what I wanted to hear. What I got from that reference was that "later in life" means it went away in the first place to resurface much later, and only in a small percent of SC patients. But Busters right, I don't recall any numbers being thrown around. Something that seems to support Freeman - but different reference -Taken from the intro from Cunninghams Antibody-mediated neuronal cell signaling in behavior and movement disorder: "(SC) Patients exhibit an array of psychiatric and psychological abnormalities that often predate the onset of the movement disorder by 2 to 4 weeks (Marques-Dias et al., 1997; Swedo et al., 1989). As many as 70% of SC patients develop obsessive–compulsive symptoms which are indistinguishable from OCD (Swedo, 1994; Swedo et al., 1998b). Choreic episodes typically resolve within weeks of onset, however, neuropsychiatric symptoms may persist after resolution of the movement disorder (Asbahr et al., 1998, 1999)." Maybe the Ashahr or Marques-Dias study has more info. PS - buster you wrote- "this seemed to be non-self-limiting and would go on for years if not treated." what treatment are you talking about? medical intervention or traditional CBT stuff?

I wonder if those with PITANDS are more likely to relapse, or need addition ivigs, or is ther is something else they have in common - like a certain type underlying infection. DS had ivig 8 weeks ago he is pitand, and reacted to a virus 2 weeks ago.It wasn't as bad as it would have been prior to ivig, but his mood, and one ocd trait, still have not retruned to where it was before the virus. He was getting better and better, and now he slipped and seems to have stopped progessing. I have a good shot at keep him strep free - but virus free? There's no way. We do so much to get our kids heathy, and then we can't protect them...I'm so depressed. Even worse - he's never had high titers - so no way of measuring what is going on. I am planning on gving him a cunningham test in few weeks. We are also going to see a lyme specialist to get that testing done. Wish we had done that (and mycoplasma) befor evig. DS is on 500 mg of azith daily. Dr k wanted to put him on very low dose of amox...but we decided to stick with aztith bcs we know the azith works to a certain extent, and didn't want to change too many variables at once, and bcs I felt it gave him more protection in general at this time of year.

I only ask about the yawn because if you are frequently yawning - its a symptom - realted to a number of conditions (not just thiroid), usually becasue you have had a drop in the oxygen levels in your blood.

yes - thx amyjoy. I was thinking more pre-ivig. I started hydrating my ds 3 days prior, and I know they ran iv fluids both before the ig and after on both days...we wer taking along flight, so I was dirnk, drink, drink, bcs air travel can be dehydrating as well. Its probably not a big concern, but like anything - sometimes too much of a good thing can be a bad thing. Esspecially if the kids are getting extra incentive to get hydrated with drinks like gatorade (salt) and other sugary stuff that might make them drink far more than they need to along with parents encouragement. I was just throwing it out there to see if it could happen, or if there should be any concern about it. thanks-

do you feel like you are on the verge of a yawn, and can't really get one?

Yeah - I just dont' know (about any of it). I don't know how it may relate to ivig, I just wanted to warn people not to go too crazy, becasue there may be consequences. I didnt' know about this phenomenon when I ran my first marathon and I drank at every opportunity - water and gatorade - and at the end I weighed about 3 lbs MORE than when I started the marathon! I weighed in before and after out of curiosity. During training I used "a pint's a pound the world around" meathod of gaging how much. Theoretically, if you weigh a pound less after a run, then you sweat thru 16oz of water more than you took in. The calories don't add up to nearly as much as the water, they are negligible. They used to tell people - drink, drink, drink, and drink before you are thirsty, by then you are already dehydrated. Which is what I see everyone doing with their kids for ivig. I don't think (as per ds's experience) there is neccessarily a correlation between hydration and migraine and vomitting. Dehydration can casue a mild headache. My sons (and I think most people on the site) are talking about migrains. Probably more related to the ivig or aseptic menningitis than lack of fluids. Its something to ask the doctors that do lots of ivig (or if amyjoy is reading this - ask the ivig suppliers - they would probably know more)- is it possible to overhydrate if kid is already really hydrated and then we push iv fluids into them on top of it? And, if so, what does that look like (nausea, headaches, voimiting...)? (as it does with runners that over hydrate?)

Dr K uses gammunex.

Should people be concerned about over hydration during ivig? My child was FLOATING for days around the ivig. As a distance runner,I know overhydrating is far more dangerous than de-hydration. People even die...below is the description of OVER hydration. In addition, we are making our kids drink alot, and then the iv fluids get pumped in, so they cannot regulate intake with their thrist or fullness. In our case my son was very hydrated, still got the migraine, and a day of vomiting (more bile than you could EVER imagine just kept coming and coming..after the sixth time you would htink there was noting left - yet..there was a couple cups of pure bile every time). I know that the headache and vomiting were NOT related to hydration (but perhaps were realted to over hydration?). ____________________________________________________________________ Dilutional hyponatremia – why it is dangerous Cells in the body are surrounded by extra-cellular fluid, which contains significant amounts of the electrolyte sodium, dissolved in the water. If that extra-cellular fluid becomes diluted with excess water, the water will migrate into the cells to keep the osmotic forces inside the cells balanced with those outside the cell. Otherwise, the cell walls could rupture and the cell would die. That ingress of water can cause tissues to swell and become puffy. The common example of that is seen in the hands, wrists and feet. While that’s annoying, the real problem is that the swelling also happens to the brain ( encephalopathy ). That leads to a number of problems which can result first in poor performance, but also could lead to DNF and possibly death if not addressed. Physiological signs of over-hydration What can you expect to see with over-hydration? There are many diagnostic signs that a physician would look for, but most runners aren’t physicians and can only go by what they can easily recognize. Digestion is impaired. With the excess water comes stomach sloshing, poor absorption of food ( because you need an adequate sodium concentration for absorption ), and vomiting. Salty foods taste unusually good if sodium is simultaneously low. Thirst is low. Neurological signs appear: dizziness, confusion, irritability, and possibly headache. If neurological signs appear, the athlete is heading toward a medical emergency and steps need to be taken immediately to prevent serious injury or death.

we do 1mg melatonin when needed. I agree, days they sleep are better - sleep deprivation symtoms are like pandas symtoms - they just multiply the effect (irritability, moody, lack of focus..) ..

aaahhh - its the Oregano ! I couldn't remember which one when I was at the store...darn. Well, its still antibiotic right? I'm not planning on giving to my son, just myself for 2-3 weeks.

Most of the loss was regained with a short (month) course of steroids. It was naproxen (not ibuprofen), but this can happen with any NSAID (both are NSAIDs). She was on very high doses for about a month. Loss is an extremely rare side effect. Nevertheless, these are ototoxic meds. I should note that the other possibility for the loss could have been autoimmune disease, but she has had that for years and never any changes in hearing. (she was tested regularly) Thanks for the update and the detail. I'm so happy she is doing better!

Im looking at the study right now. The non-pandas median was 93. HOWEVER, "normal human sera"(no ocd or tic or adhad)was 108. This is becuase she used a bunch of tics and ocd and adhd sera in the study. When you look at the "normal human sera"(no ocd or tic or adhad) and break out the non-panda ocd, tics and adhd the median goes UP! (you would think it would go down..but probably due to small sample sizes) The range of sera put into the pandas symptom group was 108 to 198. The non-panda range was 50 - 135..that low number (50) was a kid with tics, but not pandas. So, normal and pandas overlap. I'm not sure what she considers to be "pandas range" for the results she is now giving out. I know my son is in it, but he is almost in SC range. The ocd group, seems to be significantly below the normal human sera - at 83. There are six very tightly grouped (75-85) samples in that group. the sample sizes are just too small. For example, the "normal human sera" was only 5 samples. Syndenham chorea was 193- 248...six samples in that group. This study was 2006. I wish she would publish new numbers. She probably has realy good sample sizes now. And now that she knows lyme can trigger it too is probably breaking out lyme, mycoplasma, and strep sera to see if they have different cam K or anti-neuornal numbers. She also has "convalescent" numbers in there - but doesn't say how they got to be convalescent. (antibiotics, ivig, pex, time?) or when those samples were taken in raltion to when the acute phases were taken (2 mons post ivig for example?) two of the panda "convalescent" sera are the same as the accute sera...but most go way down. I wonder what accounts for this? perhaps those kids had remission of symptoms on PEX, or anibitotics alone (and just weren't in exacerbation at the time of the draw), where as the others had IVIG? The study doesn't say...that might show that one of the treatments is closing the BBB, but not effecting the sera. there is another interesting statement in the discussion part of the paper...this regarding lysoganglioside (the only anit-neuornal antibody mentioned in the study, although she now is measureing for 3 more) : "All S.C. sera, and 73% of pandas sera possessed GlcNAc-specific IgG that were cross reactive with lysoganglioside. This compared with ony 24% of non-pandas sera. Non-inhibited sera antibodies are presumed to be glNAc-specific antibodies that have no cross reactiviity to lyso.g. We believe that SC and a majority of pandas patiens possess subsets of GlcNaAc specific IgG that cross reacts with lyso.g. that are likely to be involved in the pathogenesis of these disorders which are not thought to be characteristic of other strep infections." this is interesting to me because my ds had only high lyso.g numbers...his other anti-neuroals were in normal range (altho a couple were many times higher than the negative controls). He was not in exacerbation where we took his blood, as a matter of fact his symptoms were almost subclinical at the time. I know she told me that in exacerbation the camKII numbers are higher, but what about the other anti-neuronals?