faith

\Kathy is AMAZING and very patient. It is so reqassuring to know there are individuals out there who understand the frustration and are so willing to bend over backwards to help us out. On a different note my sons score was 161. We are still trying to figure out treatment. I am still waiting for the other results the Cunningham lab provides. It has been almost a month. Im not sure what they are suppose to reveal. Do you? what it will show several different types of antibodies and in what range they are. for instance, my son had very high out of range (1200) anti-lysogangliosides antibodies present. what does it mean? who really knows? no one at present. it just suggests that he does have an abundance of these particular antibodies. when all the data is compiled, perhaps they will see a correlation into the type of symptoms that each child has and if there seems to be some common thread. maybe all those with high anti-lysogangliosides are those with tics, and maybe the other antibodies suggest more ocd, or other behavioral. ... I will add here that our score was 179, so pretty high, altho try as I might, I cannot definitevely prove strep is our culprit. my son's main symtoms are tics and some ocd..... I have asked Dr. Latimer what it all means and she has said that at present, they really do not know yet. I'm just putting this out there to make sure the right info is put out here and some do not get false hope. This is a study, and you are helping by participating in the study. If it helps with your overall diagnoses and treatment, all the better, but I do think everyone needs to be realistic....This may prove to be something very important in the future, just not yet.

basically, yes. Autoimmune and inflammation and whatever it is that causes the cam kinase to rise, is not JUST from strep, it could mean something else. that's what this study is trying to prove or disprove, or at least connect some dots......

That is great mar, that you can make a good observation like that, at least you know for next time, and if you see something like that again, than that just bolsters it...... on another note, we've discussed the 'restless leg syndrome' around here, (which is kind of related to TS and movement disorders) and I have come to the conclusion that mine gets pretty ramped up at night after consuming ice cream...interestingly, it doesn't seemto be milk or other dairy, but for some reason, ice cream will give me a night of real heebie jeebies and I am moving my legs all night.......last night it was really bad....and what did I have after dinner? ...ice cream....I'm telling you it happens every single time, doesn't matter the flavor, altho coffee seems to be the worst........I havn't gone as far to figure out all the ingredients and what it could be, but there is absolutely no doubt whatsoever that ice cream worsens it. other nights I do not feel it much..... and yet, I continue to eat ice cream.........

It seemed to be in those that were in the Swedo study, that was what seemed to be going on, but I don' believe it is definitive yet, that is why they are doing THIS study now, to compile data from those kids that are participating now and see what the consensus is....

I don't know if I'm saying it right, but when we talk about autoimmune and inflammation and the other factors, I just mean that all those are not necessarily caused by 'strep' per se. understand? I just mean that the definition of PANDAS, the AS part is "associated with strep'........so in my opinion, other things can cause the symptoms and autoimmune response and inflammation, etc.....but it is not all caused by 'strep'....... So basically, I'm saying that there are other things at play, and maybe one of hte reasons why PANDAS is dismissed by alot of docs, is bacause the strep component is not being able to be proved. maybe it is just 'something else'......and we've discussed all this around here. some of us have a hard time proving strep, so I'm just wondering if all this other stuff should be lumped into PANDAS....thinking we need another name....... I understand thats where the PITANDS comes in., but again, I'm thinking there could be other components to our kids symptoms that may not actually be 'strep' triggered. So with this cam kinase results, it does not necessarily prove that strep is the culprit, it could be something else. that's all I'm suggesting. I think new members need to know that this test is still in the study stages and is not meant to diagnose PANDAS.

I just want to point out that high cam k does not necessarily mean PANDAS definitevely. all it means is there is something causing the cam k to rise, it does not prove that it is 'strep' connected, as in PANDAS...... I am pretty sure that those with autism, tourettes, etc. are also expected to come into 'the range'...I have no doubt that inflammation or autoimmune plays a part on those too, but again, it does not definitevely mean "PANDAS".....this test is still in the study stages and they are still in the process of trying to figure out what it means. when you participate in this test, you are participating in a 'study'...it is not yet used diagnostically for PANDAS. Some of the discussion on this board is invaluable, but I think PANDAS is getting somewhat skewed, PANDAS is associated with 'strep'.......

thanks Kim, but I'd be interested in the rant.. .....how did you get out of it tho? here, it is mandatory for school, (the Dtap).......

momtocole, judy, hi, how is everything with your boy? is he doing much better I hope? you did post last that things were a little bumpy, did you wind up doing another IVIG? Faith

dut thanks, I am planning religious, but just hope they don't challenge it. If the school accepts titers, I do have current proof of immunity to diptheria and pertussis, but it wasn't done on the tetanus. It isn't the school that approves it, it has to go to the district (the exemption letter) but the principal does have to sign off. I'd rather not have to go thru that in case they 'challenge', that's always a possibility in NY. If anyone has succeeded in exemption in NY, or has presented proof of immunity, I'd love to hear about it. thanks. Faith

arial, Is behavioral therapy the same as ERP therapy? I think they call it cognitive behavior therapy too, or at least ERP is a part of it. I can vouch for ERP therapy, we had done it a few months ago, and my son did very well. I think its important tht the child starts to understand they actually do have a problem and 'want' to get help, for ERP (exposure and response) does need the cooperation and dedication of the patient. My son's ocd was retracing letters, and it really bothered him, it was getting in the way of his moving along and finishing work, he had upset and irritablity over it, procrastination. He took to this well and at first it was hard, kind of uncomfortable, but he stuck with it and it showed him that nothing terrible would come of it if he did not do the ocd.....he is currently released and is in control right now, so thankfully the domino effect of the ocd has lessened a great deal. Thanks to Megs mom for guiding me and giving me support on how to go about this. I've been meaning to give a thumbs up for ERP therapy as a tool for ocd and encourage others to seek it out. It really helps the child to be in better control..... so thanks again....... Faith

mar, dairy is sometimes a culprit for stuffiness, its like a sensitivity, as dairy is mucous forming. that's why its recommended not to consume milk when you have congestion or a cold. Also, the sugary stuff, I'm guess he had more than just the cake.....the sugar is like an initial 'high' (energy) and then your blood sugar plummets, so that's where the 'low' comes from........I know I get foggy and feel a pull downward toward depression when I consume sugar......It's good to keep an eye on those things, you never know what causes what.. Congrats on First Holy Communion! Faith

meckert, hello, ...I am going to put my vote in for the flu mist. Really, tho, you are lucky that the tics seem to run its course and then stay away till next season? that is pretty good. but if you are seeing definite correlation in November and after the flu mist or shot, I would forgo that next time. especially if the flue mist is live vaccine, the immune system may be running on high alert after that and cause some kick up in any nuero symptoms. does your child have any other issues? I would say at least pull that flu stuff out of the equation, its a trigger for some, so I wouldn't take any chances.. Faith

Please, what is the difference between DTP and Dtap? are they the same vaccines? (Diptheria, tetanus, and pertussis?)... Kim, I forget, have you had these for your boys? (I know they are older than 11?)....... I am up for this in the coming year, and I am saying 'over my dead body'....they'lll have to carry me out first. Varicella and meningitis are not 'required', so I'm staying away from that too. Pandas or not, I am feeling like they are a problem for tics......

dut, would you know if the schools accept the titers results (showing immunity) if you have it?

How long after his abx did you retest him? I just came from the neurologist (for dd w/PANDAS) and mentioned ds titer levels. The neuro said that these titer levels only mean that he mounted a response to strep, but didn't necessarily have an infection. Is this true? I find it odd that on 4/12/10 he had red swollen tonsils, and a body rash that looked exactly like the one he has last year when he had strep, and now has elevated titers...but he didn't "have" strep. It is possible that the 'mounting a response' is actually a good thing, it means his immune system overcame the exposure and he himself 'didn't' get the infection..... maybe that is all the titers really are.....the soldiers mounting a response......just speculating. I have questioned the experts too, and Dr. L. said that if someone else is sick, it shouldn't be a problem unless the child actually gets it and his immune system is compromised. I know some believe that if someone else is sick, it is possible for their child to react, but if they don't get the actual infection, I'm not sure I understand that. I think you just have to keep close look, and if you really beleive your child is reacting to others, then go by your instincts, but I am not positive this is the issue for everyone. The fact that the titers don't really tell the whole story is a little confusing. no one here really knows..

I vote for Tim Urban!!!! ...oh sorry, wrong forum...... good luck guys! just bumping up for voting reminder,........

melanie, why would your immuno doc mention Lyme docs? Did she (or you) maybe mean "PANDAS" docs?...... melanie, if it is clear that your child is not a clear PANDAS case, than I think you need to stick with what your current doctor is telling you. until you are convinced your child is not getting better, I wouldn't start fooling around with other doctors right now. just my opinion. Faith

Michael, I don't know what histamine neutralization means, but if you are referring to regulating the histamine response, I'd say poke and search on the TS board for some old posts, there is alot about high histamine being a factor for tics, etc, and some supplements that are aimed at that. sorry, I don't know enough to explain, but search out some posts of Carolyn N., she seemed to have a good handle on that stuff. Faith

tired mom, You did say the Biaxin seemed to help somewhat and she has the myco, right? did it not help enough? can yo continue on that? well, see what doc t says...... I totally understand about the kind of pain you put forth for your child, it hits right to the core.....I will pray for you...... Faith

Well then you're lucky momaine's dd is 13.........

Well you did have some reason to keep fishing and it took the catscan to prove it. so I was just wondering how that could be deduced by just looking in there. you can see the sinuses, I thought you couldn't. and if they are inflammed, then I would think you'd feel something. You say your boy had eye pain and some drip, that is one of the symptoms at least. and there were high titers, etc. .... I just think it takes more than a look see to dx inflammation and strep.

Not sure if you missed my point. But I'm wondering how there would be no symptoms of the 'sinus infection' if you have one. Worried Dad, you had symptoms or suspicions, so I understand that. and Vickie, even tho your boy wasn't bothered by it, he had something to make you suspect, cold and a little mucous I think you said before, ....It is hard to dx a sinus infection even when one has the symptoms of sinsu pressure, mucous, etc.....not all of those symptoms are necessarily an 'infection'..... I don't know, either it is an 'infectiton' or its not, just wondering.....so wouldn't the abx take care of that? momwithocdson, if you have sinus problems, I certainly can see looking into that aspect since there are some symptoms, so yea, let's see if there is a strep problem, but I don't get assuming strep is hiding in there if there are no symptoms.

crazy and dee, (dee, I responded on your other post), but was just wondering if the topomax could be kind of wearing off, don't they say some meds begin to not work after a while for some? I know it must be hard to see increase when you hd a really good run, but as you say, doc says it may not totally eradicate, so maybe its just a little flair that will back down, I would wait it out for a bit. good luck, tho, I'm sure if things were better before, it will be again... Faith

dee, your son is on topomax too, right? (sorry if I'm wrong, am I?) another poster was reporting vamping up of symtpoms despite being on topomax, .. could it just be that it has worn out its welcome? I know some say that somewhere along the line, some meds kind of stop working as good as they did in the beginning. (disregrd this if he's not on topo.)

Angela, You say the doc thinks your son has a sinus infection, or that he definitely does? he could tell just by looking in there? And he has no symptoms tho, sinsus pressure, mucious, nasal talk, whatever? If your son has this, I would go to an ENT to check it out. I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there. Faith faith, dr. b looked up her nose and said she definitely had a sinus infection. Why and ENT when he is treating her for it? Just wondering if you know something I don't. Never had a sinus infectino before. Hi Angela,... well, I don't know, you say no symptoms and she's never had one before, so I'm just kind of wondering how there would be no symptoms of pressure or headache or even mucous, if it was so obvious just by looking up there? no endoscope? just with a light? You already have her on abx, right? So is there strep there or is it just speculation? Is the inflammation due to allergies or strep? both can cause inflammation, but is it inflammed because of allergies, or is it inflammed because of strep? I'm not understanding how decreasing inflammation that one is not bothred by, will help PANDAS or neuro symtpoms. If there is definitely something there, I think you should see an ear, nose and throat doctor to follow up.