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t_anna had a post recently about canaboid oils and great effect it had on her son -- http://latitudes.org/forums/index.php?showtopic=22539&hl=oil here is recent article about marihuana and TLC having effects on autoimmune disorders http://www.scienceworldreport.com/articles/15145/20140603/autoimmune-diseases-treated-medical-marijuana.htm Can someone, please, explain the difference between TLC and oils? Do oils contain TLC? and if not, how would one give TLC to a child? thanks in advance

just on taking pills: you may want to try with apple sauce. it helps kid swallow. both of our kids were pill takes since 3 years old. makes a part of life easier.

"Is it possible to have just one big exacerbation and not multiple ones? So many of the cases I'm reading about are more of a roller coaster. Ours (so far) has been more like one giant, slow, hill only (up and down) during a 1 year period." you may want to start a separate thread just with this question. it would be interesting to know if there is anyone like that on this forum. most of the cases here are, as you say, saw-tooth. for that reason, prophylactic abx is a part of the treatment. now, just what you say here makes me think that you don't really have two options. One is the usual treatment, the other is hope that you child is an exception, which is really not something I would rely on. did you do any blood tests? are they showing improvement?

here is why wait and see might not be the best strategy: when there is an exacerbation, it means that the body has began to react not to an infection but to its own reaction to that infection. the auto-reaction has already started and it takes time for it to die down. for this reason, abx is taken prolifically, to prevent an auto-immune reaction. one could even suggest -- not speaking as a scientist, of course -- that your kid may not be displaying symptoms even when there is some underlying auto-anti-body process going on. or that you are not catching up on those symptoms. I don't want to alarm you just to give you a different way to think about what you are seeing.

beerea -- I can see that you are thinking under the influence of Dr you mention. He is very, very cautious and PANDAS boat, the one run by NIH, seems to have gone sailed from him once again. My one question is what is a better diagnosis then PANDAS/PANS for you child or the child in the original post here? being impressionable? PANDAS/PANS names a set of symptoms and their possible etiology. When you say bi-polar, you only name symptoms and assume that a brain, or a personality, has that quality of being bi-polar. then you assume that you can mold that personality out of being bi-polar. That sounds so inappropriate if you child does have an auto-immune reaction.

if you mean that you are looking for a panadas dr in the area, see pinned materials and do a searhc on dr T on this forum. there are a few drs in NYC. you might have better luck there

I haven't heard that tapering itself can cause an exacerbation. steroids, if I am correct, lower immune system. it's possible that your son just got sick. the thing to look for is if this exacerbation lasts less than his previous ones and if its intensity is lessened. if that is the case, I would call what you have progress. have you tried ibuprofen? diet? i read somewhere that IVIG takes about a year to have a full effect

OCD for Pandas kids is a symptom. what you describe, if it is Pandas, is not an early version but a full blown form. symptoms can get worse, of course. did you read pinned material? there is a list of blood tests there. best strategy is to try to find a local dr willing to help you with tests, long term abx or IVIG. you want to determine the infection that is causing PANDAS. strep is the usual culprit but it can be few other bacteria in which case it is a PANS. in many cases lyme is also involved. and, at the same time, try to get an apt with a PANDAS specialist. there are people constantly joining the forum and you may want to do a search to see what kind of case they had and what kind of advice they got. best of luck

I want to comment on the fettenning part only. Carbohydrates are the way to fat and calories. Rice, for instance, a lots of it with some form of fat like olive oil. if he eats meat and fish, loads of it with carbs. soups made with marrow bones can be very caloric -- i might have mentioned this before. About sweet stuff -- if you really want him to drink sweeter than he is currently, go step by step. half a spoon of sugar this week, then half more the next, he won't be able to notice gradual increase.

We see similar. I am not sure what these symptoms should be called. they don't quite fit either OCD or tics. and they are not exactly fixations either. but taken all together, perhaps they are a form of obsessive behavior. compulsion is not there in the sense that they don't have to do one thing, but they have to do something. if you find a good definition, please post it. we started vayarin three months ago and so some let up of such behavior. we stopped it a week ago and they are starting to creep in again.

first of, you may want to know if there are PANDAS friendly drs in your area. I would start another post with that question as your topic. if there are none, you may want to call closest dr from the PANDAS list and make an appointment. you can try with local pedis -- in most cases, you need to convince them to try certain things. the forum, under pinned materials, contains info about blood tests that should be ordered, etc. pedi might be also willing to put your ds on prophylactic abx. in general, best use of this forum is by asking specific questions like: how can I get my pedi to prescribe prophylactic abx there are several things you can do while you wait -- ibuprofen seems to help many children as do changes in diet (no sugar, healthy food, toward free of gmos, gluten, etc.) give us some sense of your ds's symptoms. why do you think this is pandas?

I don't have a proof but I believe that L-glutamine helped my gut heal -- I am celiac. you may want to post the same question at a celiac forum. there should be people there that may have some kind of proof either way for you. http://www.celiac.com/

qannie suggested that RLS might be delt with with abx. this worked for us. we tried augmentin and zytro and had some positive results with RLS. but then had to go off zytro because of stomach problems. six months later, dd went off augmentin as well. by that time we saw RLS every day. then we started her on ceftin. it took two days and RLS disappeared. we are on it now for three weeks and haven't seen RLS in this entire time. at the same time, we saw a general improvement in all other symptoms. this just to say then that if you have RLS, you may want to switch abx. i am not sure what the difference between augmentin, zytro and ceftin is exactly.

what is really, really, really difficult when you have a child with PANDAS is that you also have to fight this with a little help of medical professionals. beerea22, have you tried contacting dr sweedo and asking for help?

we did it, it also showed nothing. it's 20 minutes, not all that of an ordeal if the child is not in an exacerbation. we heard that only a few radiologists are competent to interpret the kind of change on basal ganglia you'd be looking for. not sure if that is true

for blood work, please pinned materials. also, you can do search, I think I remember someone posting one recently in a response to a question similar to yours. choice of drs. -- do research on both. the fact that you got the name of PANDAS list, speaks in favor of the neurologist. those lists are not accurate but you can call and ask, how he treats PANDAS. it is not enough for a dr to believe in it.she has also to be willing to treat it with long term abx, ivig etc. good luck

did you do Cunningham test? dr hubbuch is in watertown, she spoke at pandas conference and is LLMD. you may want to consult with her for a second opinion. I have some misgivings about MGH center. dr there recognizes only certain kind of PANDAS, is unwilling to experiment, etc. In our experience, abx have to be given for a longer period of time to see sustained improvement. for us, abx results were both immediate and very gradual, saw-toothed as it is often described.

I am taken aback by the complexity of your situation. Can anyone on this forum really add to the options you are already considering? If you are in California -- Stanford seems to have a functioning PANDAS center, perhaps trying their is your best bet. one thing only, depending on his genetic makeup, mb12 may have side effects might be increased ticking.

"I have been keeping a diary and DD had a positive strep throat dx on 12th July 2013. Severe tics and chorea like movements (i.e. dragging her foot) appeared 4 weeks later mid August. Is there a link here, is this typical or just coincidence?" for our dd, chorealike movement were, indeed, typical. she had RLS but no tics, lot of repetition, lots of inability to stop herself from saying certain things, but no TS. i don't know where we stand on trying ibuprofen and steroids to see if TS is auto-immune based. perhaps someone else will chime in is there anything that alleviates TS symptoms?

i thought that we saw improvement when we started Sacc initially. then, it seemed that we should not be giving it every day. we are now doing it once in a while. can't be sure.

Yeah, we are increasing our protien intake on the whole with beans and lean meats. We eat a lot of chicken now, and will be taking the skins off from now on. I will be able to get fish in maybe once a week. We love to grill too, and soups are definately a staple around here in the winter especially. Thanks! just to comment on protein part of the quotations: yes, and FAT. fats apparently good for brain and the nervous system.

with neurological problems, it is good to add fat. fish oil, for sure. I can't give you an advice only my belief that meat is fine and more than fine for people with neurological problems. One thing you don't mention is soup. We make soup out of bones -- any bones but pork. We have this organic farm with lamb and goat and they charge $1.00 a pound for even marrow bones. If you can find something like that, you'll have the best inexpensive meal you can imagine. we organize our meals around meat. Meat is not expensive. We use organic chicken and pork. Pulled pork is an easy one to make in the crock pot. I also grill a lot of pork tenderloin. If you don't overdo it, it tastes great. Burger, sausages -- heaven! make kids happy. Polenta is easy to make -- esp if you start 3 minute package. Anything Chinese -- kids love those thin noodles that you can eat alone with little soy sauce or in a soup. I grill ones a week and freeze what we don't eat the first day. Fish, of course. I would stay away from tomato and papers. We eat potato no more than ones a week.

swallowing: have you tried to give pills with apple sauce? not to hide a pill but to make it easier to swallow. take a bit of sauce in a tea-spoon, put a pill at the end of it, away from the tip of the spoon and he should not feel it at all. genetics: when a condition is there, then you can trace it back and suggest the connection. it is, however, not prognostic, not in the case of pandas at least.

it does matter what we call it, or rather, it matters what doctors call it since treatment depends on what that. if drs call it bi-polar, drs would prescribe certain medication. if pans, other kind of medication. and so on qannie -- I think that your twins represent PANS variants. there are several, as far as I can tell. I wish we had more understanding of those different profiles. Our children are not twins. both have PANS and one (ds) is like your second twin, the other (dd) like your first already diagnosed. We, too, thought that perhaps ds did not have PANS but then no other diagnosis fits as well. I assume, both kids are on the same diet. But the non-Pans twin is not on abx, right? how about supplements?

perhaps if you post actual numbers, it will be easier to respond.