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patient advocate, as already suggested, is an option for you, but you may also want to contact attorney general in your state. give AG info about Walgreen prices, ask for investigation. also, contact local newspaper, remind them of the NY times stories about medical costs. they should be interested. contact then your state representative and inform them. I am very sorry that your friend has to deal with this on top of PANDAS, like PANDAS does not screw up your family's world. best of luck

it's been two years for us but both of parents recall, strep, flu mist, PANDAS within months for dd. her brother was too young for the mist at the time and had a shot instead. he did not get pandas at that point.

your question is like that question about obama and economy. did he help? how can you tell? well, not getting worse should be considered a form of help. the same with abx, if your kid is not getting worse, that means that what you are doing might be helping. if you want to test this hypothesis, stop abx for a period of time. see what happens. for us, stopping abx for ds meant almost instant exacerbation. for dd, the effects were more muted. also, the reason that your child is taking abx is not exactly to get better but to prevent further bacterial infections. abx seem also to have some anti-inflammatory properties and as well as ability to influence glutamate regulation. and thus the question would be if abx are doing these things and not if abx is making your son better. with conditions like this one, you can expect that your child will have better and worse periods and you want to see what will, over a longer period of time, stabilize his system. no one thing will do it.

did you try also 5-htp? NAC? I am adding to Nancy's list

your child's mutations sound like what we have. I found all the mutations just too complicated to deal with. I did discover the following, SSRIs did not help but made us/me anxious. Molybdenum, charcoal work well for cleansing, Yucca every other day or so, Soy Lacetin, 5-htp when needed in place of SSRI -- try a small does and see if it has effect. we stay of b12 since no one in my family can process it well - initial reaction is great but it does not last and kids become loony. by the way, if your son has all these mutations, one of you parents has something quite similar. I try everything on myself first. Then try to adjust it for their mutations. we do olive leaf, fish oil, ibuprofen, cq10, abx and not much more. gluten and casin free diet plus not much sulfur foods. i would be curious to hear what helped you. when you figure that out, please post

I envy how well organized you are and how lucky your are to have this dr working with you. On MTHFR, no point in doing just it. Do the what 23 and me offers since just MTHFR gives you an extremely limited picture. as far as I can tell you are doing most you can do and in the right order. you don't mention diet -- perhaps gluten and casein free -- and that is the only thing I would add if you can do it. on yeast, saccaharomyces boulardii might be helpful. you can add it to probiotic. but watch for negative reaction like becoming more aggressive. gut health really requires you to be off abx. only then can you build a good flora. that does not mean you shouldn't do probiotics, of course. l-glutamate might be helpful, too. 23 and me will tell you about a gene for leaky gut. if your kid has it, there are things you can do.

one of Pandas drs suggested we give our dd9 (55 pounds at the time) 100 mg twice a day. we thought that to be too much and give only 100 mg and not every day either. I heard that if you go more than that you got to monitor liver. then there is that more recent warning about heart. i don't know if these warnings are across the board or not. we give 100mg often to both kids, sometimes everyday. when they are better, we stop. so far we did not see any bad effects. we give it after breakfast.

if abx changes her asd symptoms, I would run to Latimer. I would NOT however, introduce my child as ASD with possible pandas. I would start with grimacing and the effect abx had on her, with a recent tick bite. If you start with ASD, you might seem like yet another mother too hopeful for her child with autism -- I am quoting what I heard from two PANDAS drs, said with a very disparaging tone.

i think you are extremely lucky to have found this dr. ivig is golden standard though it may not help every child. if you read old posts about ivig, you'll see that sometimes it takes time for positive effects. on OCD, there is at least one thing you can try if you are not already before you move to prozac, namely probiotics. see recent post on research from tufts. you can also try NAC, fish oil, and change diet to gluten and casein free. you can also do CBT, there is a good book if you want to start it at home by Dawn Huebner. but, perhaps, the most important thing I can say is that there is no cure for pandas and all healing that happens happens over a long period of time. a year for some, five or more for others. if you expect to give something to your child and he goes to school without OCD, well, it is not going to happen.

with dd10, we had the same problem after long term abx. we had to stop zythro and continue abx. l-glutamine sometimes helps.

I want to urge you not to do all at once. you'll put yourself and your family through . cravings are going to be intolerable, etc. so, start with what seems easiest for you, either gf or casein free.

no, unfortuantely, there are no great breads out there but there are great recipes for both breads and muffins that you can make at home. After a year of practice, it takes me 20 minutes to prepare the bread for baking. I bake enough for the whole week. muffins and banana cakes take only a bit longer.

we started with younger children and I can tell you how we did it. when ds5 was diagnosed with celiac two years ago, we told dd10 that she too has to be gluten and dairy-free because she is sensitive to both. She did not have medical expertize to question us. But, yes, it is difficult to convince an 11 year old to give up so much. In the long run, giving up in this culture will help for his character. I think that you can argue that he too would benefit from being gluten free -- you can make exceptions for outings with his friends if you really think that there is no sensitivity to gluten. He could have a special eating regime at home and outside of it.

We've been on gluten free diet for 3 years. It was hard at the beginning but it is no longer. I want to give you a few simple pieces of advice if you want to try. 1) it is easier to have the whole household do it. 2) the way to start is to gather all gluten products you have and give them to a friend 3) stop buying prepared, prepackaged food with very few exceptions like hot-dogs, rice cakes of all kinds, some cereals 4) center your meals around meat, fish, fruit (apple, banana), and veggies 5) there are great gluten free breads, muffins, and cakes, but you have to make them at home. i'd be happy to share our best recepies 6) go to Asian market. most of the things are either gluten free or have a gluten free version -- avoid MSG, of course 7) remember, it gets easier as you go along. first three months are the harderst. i'd be happy to answer any questions you may have about how to manage first months on a gluten free diet.

why don't you make another post about how to contact NIH to get help with local dr and you might find first hand experiences? I've heard that she responds to email. swedos@irp.nimh.nih.gov here is here web page: http://neuroscience.nih.gov/Lab.asp?Org_ID=448

our dd10 who is on abx had sore throat for a week and it wasn't strep. there is a virus going around.

If you had a dr who ordered IVIG, I agree with Nancy, would pursue that possibility. I do think, however, that this is your best bet at this moment. Say, you get to a PANDAS specialist, what's the most he/she can do for you? order IVIG, right? which is what you already got. If you have this dr in your corner, you have a chance of fighting the insurance. one diagnosis that they should not be able to deny is encephalitis

powpow, at Harvard Pilgrim, case manager is a person who manages your appeal. when we appealed a decission hp made, case manager handled insurance side. she had no say in medical managment of our child.

oh, I am very sorry. it must be very difficult to see him again with PANDAS. You know the ropes very well and there isn't much to add except perhaps gut issues, probiotics, and fish oil. I hope you can get zythro asap. one thing has changed in the last two years, drs from NIH might be willing to talk to your local pedi and suggest a return to the treatment that was successful for your son before. best of luck

when on steroid taper our ds6 had worst tics ever for the first two days, they gradually disappeared as did all other symptoms by about three weeks after the taper. then within another week, he got a cold and some of the symptoms returned but not as sever as before or during the taper. we had only one taper and it was the turning point for ds -- caveat, we did start second abx 2 weeks prior to the steroid taper. if I can judge based on our exp, give it a few days for tics to see if they improve.

the idea is that gluten provokes an immune reaction and immune reaction hurts you. so, even small ammount of gluten is enought to cause a storm. the same idea is behind dairy. there is something about large protein molecules that some tricks immune systems into overreacting.

if she would drink, you can make soups, and you can blend, that is liquify almost anything. When our kids were bebies, we would simply bland what we ate for them by adding clear broths. it looks awful. i don't remember if you kid is taking any probiotics. they might be helpful, too.

we went to a neurologist -- rheumatologist, actually, I made a mistake in my original post -- and he did all sorts of tests trying to rule out any other nurological autoimmune condition. we did it at tufts floating hospital in Boston. I think any rheumatologist could order those for you.

when she is capable of it, and she seems she is, therapy and various kinds of discipline (we do reward system, star system and what not), should help you. abx in and of themselves may not.

i doubt very much that you can identify precisely what the benefits of gluten free are, unless you are celiac but even then. So, I want to second rowingmom, diet is an aspect of a comprehensive treatment. I do want to add this, you don't have to be gf and df forever. Give it a year or two for the organism to get able to tolarate various kinds of inflammation. for our part, diet gf, sugar f, dairy f, nightshade f, non-organic corn free, with abx and supplements is a part of the treatment and kids are doing much, much better. we saw gradual improvement over 1 and a half years and going dairy, sugar, and gluten free where noticable bumps for the better. Our kids do still have issues and they are not completely without symptoms. In all, I would encourage you to take this step if this is at all possible for you -- you need to learn how to cook this kind of diet which requires time and resources.