pr40

I just want to reinforce a specific massage about the importance of diet for treatment of PANDAS/PANS. as the last issue of PANDAS newsletter writes, "New research in Nature magazine (Wu, et al - Harvard and Univ. Salzburg, Feb 2013) shows that poor diets heavy in salt (aka processed foods and fast foods) do in fact inspire the production of T-cell 17 (Th17) which is a "misbehaving t-cell" that is produced in many autoimmune diseases: multiple sclerosis and diabetes for example." http://myemail.constantcontact.com/Count-Yourself-In--Be-Part-of-the-PANDAS-PANS-Movement-.html?soid=1103470649803&aid=7V3cVvGYVeA

dedee -- what's the dose of kavinace you give? and when? thanks!

qannie47 -- strep in the joints, I never thought of that. Is there a way to check it? She does not normally complain about joint pain but she did at the beginning of all this two years ago.

thanks, guys. you are always so helpful. yes, SF Mom, she is on azytro -- I'll move the iron and magnesium to afternoon to see if it makes a difference.

I know that only a few of PANDAS kids get RLS but need to ask for new ideas. We use magnesium and iron and melatonin and ibuprofen and all of them help. RLS went from being noticeable every day to being manageable to being absent for some periods. BUT dd also has exacerbations. They last a few days. Is there anything else that you tried that worked?

this post reminds me of the other recent post about out of the box suggestions for PANDAS. Ha! In my world, all we are trying to do is alternative and natural and out of the box. I call it TOTAL WAR as well.

sorry, I don't know how to delete my own post.

I am not sure why this is presented as news when the fact has been known for a while. I was doing some reading on quite extensive research about Bacteroides (esp fragilis) which are this thin bacteria and they are quite fascinating. First, they also seem immune to abx. Second, they seem to be able to transfer these immunity genes to other bacteria passing through the gut. Third, in the gut they are beneficial, but anywhere else they create abscess and are quite dangerous. When you die of sepsis after a routine stomach surgery, for instance, usually bacteroids are to blame. And so on. Science that ends up on the front pages is like other things that end up on the front pages, a tip of an ice-berg.

if I were you, in addition to an apt with a Pandas specialist and immunologist, preventively, you may want to start a new diet with nothing that can exacerbate inflammation. usual culprits are gluten, dairy, legumes like soy, peanut, and beans, nightshades like tomato, and egg whites. lots of meat is fine. you are working with LLMD, so I assume ds is on supplements. diet plus abx long term plus supplements plus exercise plus therapy helped us. we have MTHFR mutations too. best of luck

I usually mention diet so I'll add that to the mix. People that have autoimmune issues tend to benefit from a selective diet as a part of treatment. And I mean that diet complements the treatments suggested above.

we went to an eye dr expecting convergence insufficiency diagnosis but got the opposite, convergence excess. Has anyone had experienced with it? Was treatment covered by insurance? how long it took? did your child need glasses? Anything else that was useful? thanks!

it does not have to be strep. it can also be mycoplasma, lyme, and, apparently, Coxackie virus. The new term is PANS, pediatric autoimmune neuropsychological syndrome, i. e. a condition when an infection causes neurological and psychological problems whether it can be cured is a different matter. you should understand it as an autoimmune problem and try to treat it as such through diet, life-style, methylation. ABX help to clear and prevent infection and give your immune system a break. they also function as antiinflamatories. change your neurologist, find a PANDAS dr or a good immunologist. try ibuprofen, see if it helps. be mindful of sideeffects.

fever, for some reasons, suppresses symptoms temporarily. nothing to celebrate, though. that's known since syphilis patients went through the same. I don't know what the explanation is exactly, something long the lines of inflammation. ibuprofen, yes, you can continue because you are giving it for inflammation not for fever anymore. BUT ibuprofen may have side effects, some quite serious. our ds who is 45 pounds takes 100mg in the morning.

throat plus low grade fever indicates coxsackie which is currently going around where we live, north east. we would do ibuprofen and not only because of the fever. both of our kids just had this virus and went through an exacerbation.

as far as family history is concerned, look for auto-immune diseases, not only psychological problems. you did some bloodtests, did you to mycoplasma and lyme as well? check b and D vitamins, iron, etc. reaching but not taking -- did you check sight for convergence insufficiency? lastly, dr. K is in Chicago, you may want to start by seeing him.

i live in Nh, Portsmouth. I called around to all Maine docs that are on PANDAS list and no one does PANDAS anymore. Our strategy now is to get to MAss general, one of the chief PANDAS drs, and dr. Hubbuch in Watertown. I don't think there is anyone North of Boston who can help our kids and would like to hear if there is someone.

thanks for this post. ds has his eye exam next week for similar reasons your dd had it. i'll make sure to mention convergence.

just to second what peglem said, sleep should improve with overall improvement. and for that you need your sleep. it is not clear what you have done, but it seems that serotonin/dopamine regulation does not work. from his/her rewards, I see you are giving plenty of sugar. that might be one of the issues as well. I think I said this already in reponse to your post: there are many things you need to do and most of them require drastic changes. abx and or IVIG is the usual rout but you need to complement that with dietary changes, lifestyle changes, supplements concerning methylation and so on. this is a long and comprehensive war. if you do it piece-meal, it's only going to last longer -- well, that's our experience.

we take seeking health (dr. lynch's brend) chewable multivitamin which makes life much simpler. you may want to check out the ingredients and see if they are right for you. 500micrograms of b12 is not that much since it is not absorbed that well. http://www.seekinghealth.com/optimal-multivitamin-60-chewable-tablets-seeking-health.html?utm_source=froogle&utm_medium=shopping&utm_campaign=products&gclid=CMfOqM_CnbkCFYuk4AodoUwAgA

why not try the other things on the list as well? gluten free and casein free is recommended for ALL autoimmune issues. as is B12, folic acid, zinc, and magnesium. In my understanding, treatment has to be comprehensive in most cases esp if there is a relapse. one thing though, changing diet does not have immediate results. supplements act only a bit faster. steroid taper is a band aid that can help right away.

just about diet. it's actually very easy to go free of yeast, gluten, and eggs. you just have to do two things. First, go beyond European cuisine and, second, be willing to do some cooking yourself. that's asian, south american, african. don't be afraid to rely on meet. there is nothing wrong with it -- the organic or free range -- and kids tend to love it. i encourage you to do it. the only thing that is really difficult is changing your mind set, what you are used to. but Pandas will force you to do that anyway.

why not go to dr K again? you can look at it this way, PANDAS is an auto-immune condition but recovery process is not all that mysterious and you don't need an immunologist to tell you that. Immunologist can perhaps help you get IVIG but so can dr K. unless you suspect other auto-immune conditions like lupus, of course. You may know this already, improving includes: 1) anti-inflammatories 2) long term abx 3) steorid tapers 4) IVIG 5) methylation 6) diet and life style changes

does it have to be immunologist? can it be a panadas dr if you need to be seen asap?

I did myself and was diagnosed with Celiac. Have you checked that? there is a simple blood test. my diarrhea only stopped three months after I stopped eating gluten. in my case, gluten kills all villa.

Your questions are way above my paygrade. Perhaps, someone else will chime in. dr. b takes adult patients as does dr. n. I urge you to make an appointment with either one of them or perhaps both. there are at least two adults on the forum with PANDAS, one's name is Ophelia, the other is Lauren K. They seem to share at least some of your symptoms. You may want to look at their recent posts.