pr40

FYI, research now links MS which is an auto-immune condition to bacteria. We'll see if the connection holds and how many other auto-immune conditions are going to be linked. Esp. important is that now scientists can develop a vacine against and treatment for MS. imagine a vacine for PANDAS one day! http://www.scienceagogo.com/news/20140029050641.shtml

After reading the post, I feel like celebrating. You are doing a great job.

CBT helps with certain PANDAS symptoms, when a child is capable of udergoing it. since she cannot survive without food, you got a big problem. I hope others with similar experience will chime in. if they don't, post again. I would say that she is eating wrong stuff now and that you actually have two, not one problem. In auto-immune disorders diet is very important and so correcting both how much she eats and what she eats might be important. but on your question if this is PANs, there is nothing in what you say that does not fit the picture. what blood work did you do that came negative? most our kids blood work except ANA and Dnase were always normal.

we were on clonidine and even though it had no negative effects on dd, we stopped it. she was then on clonazepam which had awful effect on her. after that clonazepam experience, we are no longer willing to do any psychiatric medication. I know that clondine is a blood presure medication but it does have psychistric effect and at this point we would not give it to our children. you may want to post about clonidine and see what kind of exp others had.

we expect issues of various kinds to continue throughout their lives. but we also expect them to be more manageable. i don't think recovery means complete healing at least in our case. i wouldn't even know what that would mean exactly since they had issues before the first big flare. here too, our kids today are better than they ever were.

we usually give ibuprofen before bed time to help dd relax and it always does help her. we don't give it everyday. you may want to try something else. i suggest you start another post and tell us what he is on, I am sure someone will comment about tics. you may also want to put your ds's history in your signature line so we know it when trying to respond to you. as it is, since ibuprofen does not normally cause tics, it is hard to even start based on the info you provide in this post.

there were several people who joined in last two months, check their posts and advice they got if you haven't done that already. in one of those posts, it was suggested that NIH (S. Sweedo) might be willing to work with your dr. at any rate, you may want to print some info that you find here on the site and bring to your next apt to convince pedi about long(er) term abx. If I were you, I would ask for quicker apt than 2/4.

this site ranked different fish oils https://labdoor.com/c/fish-oil

does anyone else have problems with the spellecheker?

one thing to add to the previous responses you got, herxing. at the beginning of abx treatment, there is a sudden die-off of bacteria which may cause herxing reaction. it should pass with few days to a week. you may want to read about it. when we are looking to measure if abx are working, we do so, as cara615 suggests, over a longer period of time. the question is, if after month or two on abx you see slow and gradual improvement or not. if you do, then perhaps this is PANS and abx might be the right treatment. you'd asses it again after 6 months and so on. if kid is getting worse, you would try IVIG. at any rate, getting on board with a PANDAS specialist is the best thing you can do since they will help guide you through treatment.

i can't spell check. wraerkljwer

only a slightly different response from the previous ones: slow and gradual change is the kind of recovery we saw. change in symptoms as well. so, I would say that it seems your kid is on her way to improve. transitional times are going to remain the more difficult then the rest of the day. ocd book helps us with those -- dawn hubner's when your brain gets stuck. we read it with dd several times and then tried to practice it. i noticed no fish oil -- see my other post on it. it seems to help healing

airial95 -- thanks for posting your history. it is very informative. I wish we had such material pinned. in my wife's family, we see more PANDAS symptoms but they are scattered. like every sybling has one. based on my experience, seeing my wife reach her late 40ties, I have to ask if there is another priviledged age for PANDAS, namely, around menopause? As the immune system changes, it would stand to reason that symptoms can reappear.

story seems unbeleiveble, http://www.cnn.com/2014/01/18/health/fish-oil-recovery/ what's even more strange is that this appears not to be the first case. i am positng it here since, in part, PANDAS healing involves recovery of certain parts of the brain. we've been on fish oil (w/out mercury) for as long as on abx.

I think you are wasting your time with those results. Unless you can use them toward something specific, like making your district pay for education they cannot provide, they will tell you nothing you don’t know already. We did Leap testing at MGH and what they told us just confirms what our child is during an exacerbation since he was in a flare when he was tested. But they did not tell us anything about our child in general, why he changes so much, what to do to make those changes easier on him, how he learns, how to parent him, nothing. It’s like they took a span-shot of his forehead and said, this is a portrait of your child. Indeed, but where is the rest? If you do go through and have a different experience with this testing, please post.

here is a different reaction: I cannot believe you can sense a flare in advance. in our experience, flares are sudden. are you sure you are interpreting sings you see well? i did not read the whole story you posted -- in response to your question of what else can you do, dietary restrictions and methylation are the other two usual areas to check.

qannie-- i have a different exp then LLM. our mutations are just too complicated for me. BUT I haven't made a mistake acting on the restuls or the mistake I did make was not a serious one. Go in small doses is the name of the game. Trial and error led to some benefits. Also, Chinese, if you live in China, becomes over time more and more clear. so I too encourage you to get that piece of info

if your pedi is open to PANDAS, you are indeed lucky. now the question is how much he/she knows about it and if I were you I would do reseach of the pinned materials on this forum and go to your next meeting with a few printouts concering additional bloodwork. I would also ask for profiactic abx right away. Augmentin and Zytromax is the combo our kids are on. so, first step is yto detrmine if there is any lingering infection. after that is done, reasearch is pretty much over and a long slow recovery will begin -- there may just be a question if there is something else going on as well. that recovery will include, when you child is cabable to benefit from it, CBT. for many, change of diet is either a necessity or a good idea.

I am having post antibiotic problems with my gut and did some research and thought I'd share this piece of info, believing you all might find it interesting if you don't know it already. it's from wikipedia "Drugs affecting serotonin (5-HT) in the intestines can help reduce symptoms.[90] 5HT3 antagonists such as ondansetron are effective in postinfectious IBS and diarrhoea-dominant IBS due to their blockade of serotonin on 5HT3 receptors in the gut; the reason for their benefit is believed to be that excessive serotonin in the gut is believed to play a role in the pathogenesis of some subtypes of IBS. Benefits may include reduced diarrhoea, reduced abdominal cramps, and improved general well-being. Any nausea present may also respond to 5HT3 antagonists owing to their antiemetic properties.[91] Serotonin stimulates the gut motility and so agonists can help constipation-predominate irritable bowel, while antagonists can help diarrhea-predominant irritable bowel. Selective serotonin re-uptake inhibitors, SSRIs, frequently prescribed for panic and/or anxiety disorder and depression, affect serotonin in the gut as well as the brain. The bowels are highly dependent on serotonin for neural communication. "Selective serotonin re-uptake inhibitor antidepressants seem to promote global well-being in some patients with irritable bowel syndrome and, possibly, some improvement in abdominal pain and bowel symptoms, but this effect appears to be independent of improved depression. Further research is required."[92]

magnesium should be given 2 hours away from abx not to interfere. dd has frequent stomch problems but none that we could relate to magnesium which has been taking for a year now. there are different magnesiums, one for softening stools is a citrate. it is offered as CALM. we take regular oxide (if i remember correctly).

most on this list see some stomach issues and it is hard to figure out what causes them. the condition, abx, probiotics? virus? all can cause it. and probably more than one is contributing at any one time. larger point is that stomch is one of the three parts of this condition, immune system and behavior (brain) being the other two. so, the only advice I have is that stomach should be approached as an important part of the overall picture. in our case, zytromax was the cause of daily stomach problems for dd. but stopping zytro did not eliminate entirely her stomach issues. here and there, she is nauseaus and has stomach pains.

we are on abx for a year and a half. we are also thinking of stopping abx. now, most posts I read on this forum that refer to the ammount of time on abx have about 2 years. some are longer and some much longer than that. in case of heart problems caused by strep, profilaxis goes until 18 years of age or so. we will ask this question when we see new pandas specialst at MGH later this month. I can report what he says. rule of thumb i once heard is three months without exacerbations.

what's really frustrating is that this dr does not ask himself what mental illness is. are there many kinds? how is it connected to immune system and how to digestive system? how can it be managed given the complex relation with immune system and stomach? etc. in my mind, most "specialists" are just that "specialists" and we, Pandas parents, need to educate ourselves to be able to manage our children's care since, obvisously, "specialists" are not going to do it for us. this is then not to say that my children don't have "mental illness" but that what they have is wastly different than what this dr assume under that term.

"Tell me more about these little flairs while on abx. What are they like? how severe can they get? Will it be anything like it was while not on abx? how long does it usually last?" our experience: definitively flaris while on abx. they can get sever but less intense than before abx and shorter in duartion. moreover, during the year and a half, intensity is going down as is duration with our ds. dd is a bit different in that she is more stable but has more "permanent" OCD behavior

this may or may not be PANDAS, however. and strept test, even if IGG is positive will not tell you much beyond the fact that she was exposed to strep. so, yes, I think you are right to seek an apt with a PANDAS specialist. If it were me, I would give pedi what he needs to prescribe abx. that is, I would tell him, she goes to bathroom every five minutes. but, also, abx alone will not be sufficient to change your child's eating habits. you need to modify behavior. CBT is one option.