norcalmom

DS has been on a fairly high does of tindamax for two weeks now. Is this what could be causing extreme moodiness? He's always moody, irritable, and with the holiday he's been on "vacation" (not me!) for two weeks - so normal routine is out the door and all he wants to do is x-box and get on his computer. usge fights have eruprted over it, and other silly things that he seems incapible of taking no for an answer. Pandas make that a little tough for him usually, but right now it is off the charts. anyone with any personal experience with this antibiotic? I don't think its herxing - I did an experiment yesterday - I didn't give him his first two doses, becuase we were on a family outing, and he did well all day until I gave him a does late afternoon. Within 30 minutes he was a different kid. Maybe it is just coincidence, but I appears like a side effect of the drug, but isn't listed as one that I see.

About three weeks ago in the face of overwhelming evidence that my pandas/pitand child had a chronic mycoplasma infection, we decided to go full blown mycoP/lyme treatment. He had had two HD IVIGs - last one in April, and about 8 months before that was his first. Those helped tremendously, but after each you could see him slide backwards. After the second, he didn't imporve as much as the first, and he had one minor slide back with separation anixiety / sleep issues, and it didn't really do anything for one aspect of his OCD - but did resolve a few of the other things that were going on. So, didn't improve as much as hoped, but was very stable for a long time, mainly I think because he didn't get a cold or any virus for several months. Well, he got one about a weeks ago. But I'm happy to say, he did not have an exacerbation. First time EVER. Even when he was doing great after the first IVIG and improving weekly, when he got a cold he would have an exacerbation - albeit shorter and less intense than before IVIG. We could always tell when he would get a cold the next day - he would wet his bed, have insominia. Then the cold, and tics and major increase in other symptoms. ALWAYS the bed would be wet the night before. So, this time around, no symptoms other than being moody. But, he's always moody and we were told that the new antibitocis would make him feel worse before better for first few weeks. We switched from high does Azith (500 mg/day) to Doryx - 250/day (broken into two does) and tindamax - I forget dose, but its 3 pills per day. Its a total of 5 pills per day. And he is getting an herbal immune supplement called A-myco by Byron White, along with Co-Q10, D3, , and NAC (and sometimes fish oil and some B vitamins if I can get him to take them). Along with probiotics - minimally a big does at night but I also try to give him at least a yogurt between the anitbiotics during the day. Its a lot of pills. Took me a while to get here. I hate pills. And its a good thing DS is on vacation for two weeks while I get him into the routine of taking a few things at a time, several times a day. He still has his "eating thing" OCD, but the past few days it seems less intense. Although he has definately has some periods of being very moody past week as well. So, some good stuff, and some bad stuff. But I consider the fact that he didn't fall off a cliff due tot he cold he got to be VERY good stuff. Cross your fingers for us!

We are doing NAC and fish-oil. I bought curcummin, but unfortunately the capsules are too large for might sone (just slightly). Anyone know of a manufacturer that has smaller capsules? I think his were 500mg, and that was smallest I could find. trying to feed him more Thai and Indian food! Also, Co-Q10 - DS takes that and it also has anti-inflamatory properties. Here is a link to more info on that. http://www.nutritionalsupplementscenter.com/info/HealthSupplement/coenzymeQ10.html

Stress can play a big role. You actually NEED to have away for the Auto-antigens to cross the BBB - they are too big to fit in "normal" healthy people. The theory is that the BBB is compromised in some way as well as high amounts of auto-antibodies. In the mice studies they did - the ones where they they give genetically engineered mice strep and then transfer the antibodies and the mice "catch OCD " by anit-body transfer alone (this is VERY short hand) - they NEED to give the mice something to open the BBB - otherwise the experiment does not work. They give the mice the equivalent of epinepherine - stress hormone - which is known to open the BBB. I think we all need to be looking at things that can cause problems with the BBB. Mainly, chronic infection. Low level chronic infection can do the two thing neccessary to cause pandas - it messes up you immune system - and - it opens the BBB. Strep may have become chronic for you child, or he may have an underlying infection that is making it more difficult for his immune system to clear the strep. Regardless, I'd fear that more than what the anitbiotics might do. It sounds like a change is needed regardless. Maybe the herbal route would be more suited to your style, although I've read it is less effective. Also, the anitbiotics have other properties - you may only be seeing the result of the fact that some are anit-inflamatory, and some have immune - modulating effects. Perhaps the anti-biotic you are using is NOT fighting the infection any more, perhaps you are seeing an improvement because of these other effects. Have you any test results for monocytes, sed rate, and importantly IgG and subclasses? If your child's IgG, IgM, or any subclasses are slowly falling, then you have an indication that his immune system is failing to not just deal with this infection, but with ANY infection. The anitbiotics just help your child clear the infection, their immune system still has to be fairly heathy to do that. We have to also build up their immne systems, and reduce inflammation too. I'm not crazy about all the pills either. Heck, I don't even like taking or giving vitamins to my kids because I believe they best get those from their diet. But, here I am. FINALLY willing after almost 3 years of high does Azith (which worked fairly well on pandas symtoms, expecially in the beginning) to switch antibiotics and give about twice as much, and after much testing I think we have more targeted antibitoics for what my child has. And I'v also added in a bunch of "support" in terms of herbal immune boosters, anti-inflamatory supplements and vitamins, and things seem to be doing well on the new regime. DS just got the cold everyone had, and he did not exacerbate at all (well, he was a little more irritable- but that was it) . No tics, insomnia, seperationa anxiety, nightmares, looking into the sun or bedwetting. First time in years - even after the two high does IVIGs (which I would do again in a heartbeat), he would still have an exacerbation if he caught a cold - albeit much shorter ( a week or less) and less intense -(maybe 3-5 symptoms that i could see vs 7 or so in full blown exacerbation). We are by no means there yet. So, this is just my opinion, based on our experience. I wish you the best with your decision, and would second the people above that you should consult with a pandas specialist to fully explore what is going on with your child's immune system.

As far as I know they are no longer running the tests. They are in the process of opening a commercial lab, and then you can get the test done through a regular channel. You can look up Dr Cunningham and her team on the University of Oklahoma website and email them if you wan to ask them directly when and how to get the test.

I've been looking back over my son's blood test - looking for substantiating evidence for chronic infections. HIgh monocytes. high eos, Low overall IgG - not low enough to cover IVIG, but lower than normal range, l makes no strep pneumoniae titers. Low iron (ferretin), and other minerals, despite being on iron rich diet. I also consider the fact that the Cam K only went down to 132 one of them. Why? because a chronic infection would cause both inflamation as well as an overreactive immune system (which has been documented all along with the high monocytes). And just like kids with strep WITHOUT pandas - who have a median cam K of 135, I'm assuming other types of infections know to cause pandas (mycoplasma and lyme) would elevate the Cam K as well. Lyme's a given on that one - she has already said lyme with highly eleve cam K. What I don't know is will Lyme (or mycoplasma) WITHOUT neuro -pychological symptoms elevate Cam K. All of these number indicate a chronic infection. they can also indicate other things, like lupus, leukemia, or other autoimmune disease. but once I saw the IgG up, I knew he had that. There is other testing for mycoplasma. You can also do PCR testing. IF you have other markers of chronic infection - and don't have full resolution of pandas - and a consistently above average Cam K (130 is still pandas range!). My son's cam k as 176 - when he was at baseline with almost no symptoms. I've no idea how high it was during exacerbation. If you look at the study, how high it was didn't matter. The very high high ones went down to normal too. (at least the same percent did - as memory serves, not looking at the study). So I could stand to be corrected, but I do recall wondering if IVIG was as effective with very hig cam K, as with lowish - and I think I recall that it was.

hi T potter. Wow. I'm sorry to hear about his allergies. I do get concerned about all the antibiotics. Are you using herbals instead?

I guess we were lucky that he did have anitbody response so it was caught. His only symptom was the non-productive longish- lasting cough that he had two or three times in the past 2 years - an maybe a low grade fever, but in terms of childhood colds - it was minor, somethng you wouldn't normally bring kid to doctor for. I recall bringing him in to have him swabbed for strep at his second exacerbation - due to this type of cough - the doc said it was just a virus, no strep and no typical pneumonia. (they listed to chest). There is also PCR testing. But in absence of symptoms, its hard to say how far to take testing and which ones to do. I think since myco P is a know pandas cause, if your child does not recover fully with IVIG - or even before IVIG - then it is worth investigating. Thanks for pointing out that th eIgM can also stay elevated. I didn't know that, just read that it typically falls and the IgG stays up. What are you doing for treatment New Beginnings? She's been positive for over 15 months.. I'm sorry to hear that. I have been reading how hard myco P can be to get rid of. Please let me know what you have tried.

I did tell Dr Margo and Dr. sean Mc G. about the test results. Margo emailed me right back. I bet she would write the script to get tested. My son's Cam K after IVIG only went down to 131, which was weird. And although he got better - he didn't get all the way better. I think the IVIG has helped him not get colds and viruses - and gotten him to about 80-90% (but this is all relative - one person's 90% is anothers 20%!) He had/has many, many pandas symptoms in exacerbation. I am beginning to think more of pandas as a BBB disease. IF there is something that can keep the BBB open - like an infection - then they overproduce the autoantibodies becasue there is a constant feedback loop of positive reinforcement. Adrenaline can also keep it open - and that is what they give the mice in the studies to get them to reactive to the autoanibodies. When I heard that at the symposium in TX a lightbulb went on for me. Mycoplasma is so small it can cross the BBB too - so more reason if your child is not recovering fully from IVIG to investigate that one. I know that someone previously posted that Dr Swedo or Cunningham said that the BBB might open due to a traumatic event or infection, but they said it it would then close. I see no reason for it to close in our kids - since they are in states of producing massive amounts of adrenaline because they are in a constant state of flight/fight and anxiety. The BBB opens up (due to traumatic event, or infection) when the the kid has a strep infection (and are therefore already producing more autoantibodies - this per cunningham - strep alone without pandas raises the camK to 135 (median) from 90) the autoantibodies get through the BBB and attack the center of the brain responsible for flight/fight/anxiety - and the kid kicks our more adrenaline, and the immune system sends back message to make more anti-lysoganglioside (or whichever) because it found that antigen - our kids brain...and there's no way out of the cycle. So - while I believe fully in pandas and the autoantibodies - I think in kids where the IVIG does not take care of it - then they must still have some sort of infection. Something is keeping the BBB open. And once the immune system has sensed that autoantibodies are an appropriate response (their first pandas episode ) - they are more likely to overproduce these when our kids get sick. That's why they exacerbation due to viruses. Just my 2 cents. IgM only stays elevated in the beginning - so I'd assume anyone with chronic myco P wouldn't have IgM. If the IgG is elevated above the normal range (for our lab that is 300) than you should test again in about 4 week to see if it is trending up or down. Use the same lab. Good luck! I met your DH in TX ans saw pic of your beautiful daughter! As I recall our kids have a few other things in common when it comes to tests - like low ferretin, lowish IGG, and I think your daughter also didn't go all the way back to normal on the Cam K test post IVIG? I don't know where you stand on the whole great lyme debate, but regardless of where you stand - those docs will test the heck out of you and give you antibiotics appropriate for whatever they find. I don't even 100% buy into that my DS has lyme - they think he does, I'm just not sure. They were however the only local drs that thought that the high IgG for myco P was an indicator that he probably had myco P. All the other docs said it meant nothing.

scossio - you need to test again to see if the number is going up or down a month or two after the first blood draw if the IgG is out of range - regardless of the IGM. IgM only goes up at the beginning of the infection (or on the first infection or two - after that they don't make the IGM anymore) so the only way to tell if you have had it for a while is to see which way the IgG is trending. My son was on 500mg of Azith for the past 2 years. (fairly consistnetly). Although like most, he did well for first few months, it seemed to no longer work for pandas but I kept him on for prophylactic/immuno modulation/anti-inflamatory purposes. From what I have read, Doxycycline is the antibiotic of choice for myco P, but others are sometimes used as well.. There are several strains of mycoplasma, and they perhaps determine the best antibitoic. Obvious the Azith wasn't working for DS. Our doc has him on Doxycycline - 150 2x per day (he weighs 125) and the literatrue I've read says the does would be between 200-300 total for an adult. He is also taking something called "A-Myco" which is an herbal tincture you can buy over counter. I don't know much about that- will post if I learn more. I bought it there in the office, and they told me to increase from 1 drop 2X/Day to 7 Drops 2x/day very slowly. Here is an excellent summary of mycoplasma, its on a morgellons website, but its a good overview and has treatment recommendations and other considerations.. http://www.morgellons-uk.net/?p=467 Best of luck to all!

Well, I FINALLY have something on PAPER that says my son HAS mycoplasma! YAY! At least now we know what antibiotics will work best for him, and why he does better after an IVIG, for a while anyway. I'm posting this on the Lyme board - because I have my son seeing a Lyme doctor in case he has Lyme. His test results aren't very conclusive, and his only symptoms of Lyme is pandas. I'm really glad I stuck this out - weather or not he has Lyme I dunno - but he HAS mycpoplasma for sure, and the LLMDs know all the infections and antibitoics like the back of their hands - so its the best place for you if you think there might be some underlying infection. Here's the scoop - we tested for this over a year ago (just did it because he didn't ever have strep history, and I had read myco could be cause of pandas - so I asked to have it tested). He had NO mycoplasma symptoms at the time of testing. Just pandas, and a recollection on my part that he had had a long lasting, dry (almost croup-like) cough about a year before. IGM - this is the number that tells you if you have an active infection - was negative. IGG - this number tells you have HAD mycoplasma. But, there is a range for it. Under 320 is normal for our lab's range. His was 2450. I researched this and talked to many doctors.They were approx. split - our Stanford immunologist said it meant that he HAD mycpP and had a very robust reaction to it and makes a strong antibody response. (and that is what you will find in the literature). A researcher that is considered an mycoplasma expert because he discoved that is what was behing gulf war syndrome, said to him it probably meant it was chronic. These are just two - the lyme doc said could be chronic, regular docs (including Dr K) said it meant nothing. What DOES mean something is if it goes up or down over time. Between the fact that IVIG would mess up his numbers, needle phobia, my exhaustion from tests, and the fact that when he switched to Doxycycline he had a sun reaction (this is best antibiotic for mycoP) I decided to not test him for a while and stay the course with seeing how the 2nd IVIG was and continue with azithromycin and occasionally trying some different supplements like NAC. HIs Mycoplasma number is now 2984. Up 534 points. I am sooo thankful I had him tested again. I had to ask for this. Thank goodness I did. He's been doing fairly well - around 80-90%. but still has a very disturbing OCD thing, and anxiety that sometimes cause nighttime issues, since his 2nd IVIG. He's stable at 80% or so, at the moment, but has not made any improvements since about 4 months after his last IVIG (in April - BUT, and this is a big BUT he has not had ANY illnesses - thank you IVIG- and I think that is why he has not slid backward during this time). I cannot WAIT to start him on antibiotics for mycoplasma. The sun is gone for the next few months...yay!

Well, I FINALLY have something on PAPER that says my son HAS mycoplasma! And I can't wait to tell some of the docotrs and specialists that they should be testing, and retesting if warranted - kids with pandas that don't just have a clear cut case of strep for mycoP. Here's the scoop - we tested for this over a year ago (just did it because he didn't ever have strep history, and I had read myco could be cause of pandas - so I asked to have it tested). He had NO mycoplasma symptoms at the time of testing. Just pandas, and a recollection on my part that he had had a long lasting, dry (almost croup-like) cough about a year before. IGM - this is the number that tells you if you have an active infection - was negative. IGG - this number tells you have HAD mycoplasma. But, there is a range for it. Under 320 is normal for our lab's range. His was 2450. I researched this and talked to many doctors.They were approx. split - our Stanford immunologist said it meant that he HAD mycpP and had a very robust reaction to it and makes a strong antibody response. (and that is what you will find in the literature). A researcher that is considered an mycoplasma expert because he discoved that is what was behing gulf war syndrome, said to him it probably meant it was chronic. These are just two - the lyme doc said could be chronic, regular docs (including Dr K) said it meant nothing. What DOES mean something is if it goes up or down over time. Between the fact that IVIG would mess up his numbers, needle phobia, my exhaustion from tests, and the fact that when he switched to Doxycycline he had a sun reaction (this is best antibiotic for mycoP) I decided to not test him for a while and stay the course with seeing how the 2nd IVIG was and continue with azithromycin and occasionally trying some different supplements like NAC. HIs Mycoplasma number is now 2984. Up 534 points. I am sooo thankful I had him tested again. I had to ask for this. Thank goodness I did. He's been doing fairly well - around 80-90%. but still has a very disturbing OCD thing, and anxiety that sometimes cause nighttime issues, since his 2nd IVIG. He's stable at 80% or so, at the moment, but has not made any improvements since about 4 months after his last IVIG (in April - BUT, and this is a big BUT he has not had ANY illnesses - thank you IVIG- and I think that is why he has not slid backward during this time). I have my son seeing a Lyme doctor in case he has Lyme. His test results aren't very conclusive, and his only symptoms of Lyme is pandas. I'm really glad I stuck this out - weather or not he has Lyme I dunno - but he HAS mycpoplasma for sure, and the LLMDs know all the infections and antibitoics like the back of their hands - so its the best place for you if you think there might be some underlying infection. I cannot WAIT to start him on antibiotics for mycoplasma. The sun is gone for the next few months...yay!

I was ready to write a note and check the "against religious beliefs" box but our immunologist wrote a note saying son recently had IVIG - and was therefore fully immune to any such infections through the donor antibodies. Bought me another year (at least)! What is best is to have you kid's titer checked. Most kids make the titer just fine and don't need the booster. At least them you will know - it is a double edged sword, there are alot of kids getting whooping cough right now, and I think an exacerbation would pretty bad from actual whooping cough too - but at least then you will know if you runt he risk of that or not. If your child has a titer in the acceptable range - you know you are in the clear and your doc. would probably write you a note no problem..

HI all- DS is on week 5 of Cedax. HE did not really have any herxing that I noticed, but he did seem to respond to it as he was having alot of sep anxiety and night time waking, and that has mostly disappeared in past 4 weeks. In the past week to 12 days he has been waking up with headaches. Not every day, but more and more frequent (past 3 days in row). Any thoughts? I have LLMD appointment on Thrusdya, and want to ask some informed questions! Since he has pandas and is known to react to viruses - I thought maybe he was fighting somehting off, but that doesn't seem to be it. Possibly he is grinding teeth at night...maybe his liver is having problems with alt he meds - its also a know side effect of the medcation (but would that happen after 4 weeks of taking it?) I did also start to skip the occassional azithromycin - he's been on that for 2 years + so figured probably not doing anything. Don't think that could cause, but I dunno. I guess I'll find out more on Thursday. We did blood work - not done in over 9 months - including a myco P titer to see if going up or down. Wish us luck.

There are two test for mycoplasma - IgG and IgM. If IgM is over 700(ish) you most probably have an ACTIVE infection. If IgM is negative (under 700) and IgG is over 700 - then you probably had mycoplasma and have recovered and make the antibody to it. There are no studies that I have found that conclusively tell you if a very high IgG means anything in the absense of a positve IgM. Some doctors will say it just meant that you had a very strong response when you had mycoplasma, some will say that it indicates you have a chronic infection (you can have no "typical" symptoms - although many will report a long lasting dry cough as only symptom). However, I have also read that most adults don't make the IgM if they had mycoplamsa before - and I dont' htink there have been any studies on kids for this. So, if you had myco P two years ago, and recovered, and you get it today - there is a very good chance you will not make IgM - so you won't test positive using the titer test. Regardless - you can have pandas. You do not need any active infection to have pandas. The infection triggers the immune system - which casues pandas. Strep, myco P and lyme are fairly well accepted as being triggers. Once triggered, you can get a common cold and your immune system will send out the anti-neuronal antibodies that attack the brain (that are very high in our kids). For some reason, once triggered, our kid create an over abundance of these nasty buggers. Your need to make sure all the infections your kid might have are tested for and eliminated. The best way to see if mycoplasma is chronic or getting better - is to retest your child after a good long course of antibiotics and no physical symptoms for 3-6 months. If the IgG is the same or lower, they probably don't have an infection. If it is climbing, they probably do.

At the time we did this testing my son would have been considered 2E. It was interesting and informative for me because I was blaming his see saw school work on lasck of motivation, laziness, perhaps ADHD. One section of test was very informative - they test how well you can do fine motor, at the same time as spacial processing. He couldn't do it at all. Bottom 2% and bottom 5% on the two sections that measure this. He would always do all his math in his head - pretty complex stuff that I could not do in my head - get it right or very close to right most of the time and then write down just the answer (and loose 50% of the credit for not showing his work!) We thought either he was really smart or very lazy - or both - turns out he just can't write when he is doing most math. Its very difficult for him. I like to think he's really smart for doing long equations and word problems in his head, but he probably has been compensating for so long that he has developed other skills that enable him to hold all the numbers in his head for longer than most people can. Made me feel pretty bad for all those times I'd been tough on him for being to lazy to write anything down - or erasing his work and telling him to write it neater ! (bad mommy..I cringe when I think about it - but who would guess that there is separte part of you brain for where these two things overlap?) He can write and draw just fine, and do math just fine, but not at the same time. I also cringe thinking about all the stress and self esteem issues he probably suffered when the teacher would ask thme to do a simple task like copying a table, or a graph from the board. Its different than drawing a picture, you have to us spatial ability to copy stuff. Pooor thing! So I have more compasion for him now. However, he refuses to use the alpha smart or get copies of notes for stuff that goes on the board. So, he just gets a pass from me if I see that he is marked off for not showing work and stuff liek that - however - he is MUCH better with it now - two years later.

beautiful!

Newark, You need to go see a pandas specialist or a neurologist - only they can diagnosis chorea. I can't really see what he is doing on the video, but even if I could, I would take him to a neurologist and/or a pandas specialist. A neurologist would be more famililiar with types of chorea and how to get your child to do it for them. If you think you can capture some on video, thats great, take it with you to the neurologist. If the neuro says it is a tic - and does not give you a S.C. diagnosis, and you are still convinced something is wrong, then I would see a pandas specialist. Or if you are in an area with a really good pandas specialist, you could start there. There is a list of doctors that have helped with pandas "pinneed" at the top of the general pandas board. If there are a couple near you - you should post who you are thinking of seeing, and people will PM you. Some of them are truly speciialists, and some are just helpful - but not as knowledgeable. Dr B., Dr K, Dr M and a handfull of others have been treating this for years, and some are just docs that have one patient that they have helped. Personally, I'd start with a neurologist. If your child does not have a lot of other pandas symptoms and you suspect chorea, they will be more familiar with that diagnosis than even a pandas doctor. And make sure to get a strep titer test (ASO and Anti-Bnase(?)), even a neuro will probably give you that if you ask. The sooner you get that the better - they don't mean anything if you don't have raised titers - you could have had strep and they don't go up - BUT if they are high, your child definatly had strep recently or currently has it. they go down over time - so the sooner you get it done the sooner you may have some evidence that your child had some form of strep that went undiagnosed, or a different presentation. If you have a good relationship with your pediatrician - give them a call and see if you can get a blood draw for that ASAP. You might have to wait to see a pandas doc or neuro, and you don't want to wait on that test (as I said, the numbers go down...) This isn't a pandas or SC test - it just shows that you recently had strep (a know trigger for both of these). And a negative does not mean much - but like I said a positive means alot. There are lots of types of strep other than strep throat...so you can have it without knowing it, as many on this board well know. In addition to that, there are other things that can trigger pandas (but not SC) that a pandas specialist will also test your son for. Keep us posted on what you decided.

It sounds like you are describing what could be "milk maid's grip or choreic hand - it is a classic sign of Syndenham's Choreas - and if you can get that diagnosis that is great - it is basically what pandas is based upon, but it is like 3boysmom said - much easier to get treatment. Google ":milk maids grip or grasp" and Syndenham's Chorea from one wesbite I found on Syndenham's - 1. Choreic Manifestations begins abruptly or insidiously about 4 months after infection chorea usually generalized but can be unilateral affects face, trunk, and distal extremities typical signs: milkmaid's grasp: relaxing & tightening hand shake choreic hand: spooning of flexed hand & extended fingers darting tongue: unable to maintain protruded tongue pronator sign: arms/palms outward when held above head

A number of Swedo's original studies involved kids with tics only. They more recently distanced themselves from this group (tic only kids) because of some negative stuff that tourettes researches have attacked them with, so now they stress the OCD part - where previously they stressed the tics. My son presented mainly with tics (OCD may show up later, or may not). A significant number of kids only have tics, or tics are the main symptoms and others are to a lesser extent. Most kids have more than one symptom and there is a long list of symptoms beyond OCD. And he could be in the 5% - 10%(?) that only present with tics too. So, its worth seeing a pandas specialist and possibly trying some antibiotics or other immune therapies, as well as getting a thorough immune work up.

It may not be as simple as removing the infection (since your childs tonsils didn't show infection). Tonsils do other stuff relating to the immune system. One of the researchers that presented in TX presented on his work which shows that tonsils produce a protective immunity thing-y (that is the technical term that stuck with me! ) (I think it was interluken some number -IL-4 maybe?) against DCM (dialated cardiomyopathy) which is another auto-immune disease, and has some characteristics similar to pandas (sometime triggered by strep, is autoimmune...actives CamKinase II). In other words, if you remove tonsils before the first time they made this thing, you can increase your chances of getting DCM drastically. Anyhow - not saying our kids shouldn't have tonsils out - they have different mechanisms going on and most have had a chance for this thing to have been produced - I'm saying that perhaps it isn't infection of the the tonsils, but some other immune modulator that has been effected by removing them - and for your son, it was a good thing. Also - aren't' the kids given a shot of some high does antibiotics during T & A surgery? Maybe there was infection elsewhere that was helped by this? And were tonsils/atenoids disrupting breathing during sleep - maybe he's sleeping better too? Just a lot going on to try to figure out the cause - enjoy the benefits! and congratulations on step to wellness!

Seems odd that Dr B would have you take a lyme test after several IVIG's - we were told you needed to wait several month (3 or4) otherwise - you are testing someone else's antibodies, not your own. It doesn't matter where you fall on the Lyme debate - the tests for Lyme stink. Ditto mycoplasma. There are kids that do not improve that much with IVIG, or don't get to 100% and for some reason other antibiotics or combinations of antibiotics have worked for them...lets not debate the reasons. Antibiotics all have different qualities and characteristics. Some cross the BBB. Some are very anti-inflamatory...and a host of other things I understand little about.

Hi Bronxmom, my best friend's son had neck pain on and off for months before getting dx with arthritis. I know you are asking about infection, and this isn't infection (well, actually there are some theories that RA is triggered by infection, and it is yet another form of an autoimmune disorder which seems we all have more than our fair share of in the family tree) but, you might want to check into it, as treating it earlier rather than later is helpful. http://www.everydayhealth.com/neck-pain/neck-pain-arthritis.aspx

Friends non-pandas kid was doing this - and they found she had allergies. Could also be myco - you don't have ot have titer to have myco. As a matter of fact, if you had it in the past, you probably won't make an IgM titer, and if they only show an IgG titer they tell you that its probbaly because you had it in thepast. Do you know what your childs Ivg and Igg titers were? And of course...could be tic.

This is what causes me the most personal stress. I feel like the person who makes all the decisions has no medical training (that'd be me!) and I am trusting my son'ts care to her, and will have her to blame if something goes wrong or isn't right. In the end, we all just do what we can, trust who we trust, and do our best. There is more than one way to skin a cat, and as you can see from the board different things work for different kids. I will say on another note that I nearly gave myself a nervous breakdown flying half way across the country to meet with a doctor many other professionasl didn't trust, for a treatment my insurance, and every doctor I saw considered "controversail". IVIG was the best thing I did for my son. I've no regrets - the only regret I have is not doing it sooner because I was sooooo stressed out and fearful of making the wrong decision.