tpotter

We've hit #5 this morning! Keep voting...last 3 days!

I agree with SFMom. I would definitely do the blood tests, and have everyone in the family checked for strep, as well (blood tests...not just throat swabs. Strep can hide out in plenty of places besides the throat.) Who's to say that your tics also weren't started with an infectious agent?

Our son's face turns bright red, and gets puffy.

Everyone is so right. I don't think you'll have a problem getting an appointment with him. BTW, we'll be there from July 8 - 10 for IVIG. Maybe we'll see you there. Good luck. You are really an amazing person to be taking such initiative at your age. You'll go very far in life with that skill!

Dr. L. is out of her office until the beginning of August. Dr. K. and Dr. B. I believe are available. Don't hold your breath waiting for Dr. T. This is why NIMH absolutely must update their website. It does make sense that doctors will follow their lead. It's not ok that Dr. Swedo is apparently saying one thing at conferences, but hasn't updated her website!

PANDAS causes physiological stress, and external stress can also cause symptoms to flare. We've found that repeatedly, and it certainly has been an issue with school related stress.

Ditto

I want to PM you about this, but your inbox is full.

Thank you, thank you to everyone who has been helping. I know it's a ton of work, but it's so worth it for so much to come of this. This is also a testament to how much we trust in the work Dr. Cunningham is doing. I know it's early, but what about getting money to pay for some of the docs to get out there and speak to colleagues (general rounds, etc.) Money that would cover the cost. Money that would pay for ads in magazines, etc? I know I'm dreaming, but isn't this how the current challenge started?

Wegman's definitely has a GF section. If you have a grill, do a lot of cooking on that. Fast and easy, and tastes good. Rice milk, Almond Milk, and Soy milk are good, but be careful, because some Rice Milks used to not be completely GF (read the ingredients, and the warnings on their labels.) They're also fattening...go easy on them, and eating too much soy can be problematic because of the hormone effects (it's ok to eat some, though.) (I think we're getting you excited about going GF?)

Dr. K. does not have access to PEX. Unfortunately, only Dr. L does. Both my children had PEX, and one had had IVIG prior to that (he's now scheduled for IVIG with Dr. K. in 2 weeks. Was scheduled for PEX with Dr. L, but things fell apart at the last minute, and then her son...) Anyway, my feeling about the 2 is that we found PEX to work very fast, and got rid of a lot more than IVIG for my son. But, my older son did not get relief from most of his OCD (the worst one, unfortunately) with the PEX. Realize, though that my children are older, had it a long time before being diagnosed or treated, and some things are just going to be different. If I had a choice, I would definitely do PEX again for both, followed by IVIG. But, that's my personal opinion. I'm glad you have an appointment with Dr. L in August, so you can make a decision. But, keep in mind, too that it really might be worth appealing the decision for the IVIG.

Oh, that reminds me, also watch for "flavorings" (i have sometimes called companies, and told them I am gluten and dairy free...they usually tell me not to eat their product ) I guess some people like the frosting you're talking about. I was so excited to use it, and then I ate it (I won't say more...everyone has their own tastes.) I also eat a lot of potatoes, rice, rice cakes (get the brown rice products, including breads, because they're better than the white rice if you want to eat healthy.) And, if you want something sweet to eat, get a recipe for cakes that are Kosher for Passover (but that use potato starch, rather than matzah meal.) If you PM me, I'll send you a really good recipe for Angel Food Cake (uses 10 egg whites.) Chex cereal now has several products that are GF (it's written in big letters on their box.) They're pretty good. But, if you want to lose weight, you can't be eating all the carbs I've been talking about.

My boys get rages (especially younger one.) But no Mycoplasma P.

Our holistic chiropractor had us cut out wheat (ended up GF in the end), dairy, yeast and sugar. Made a HUGE difference. I have been GF for about 20 years, and trust me, it was a whole lot harder then (there's so much available these days.) Here's what I recommend when people are starting it: 1) It doesn't do any good whatsoever to only do it part way. If you need to be GF, you can't eat any (bottom line.) 2) The cheapest and easiest way to get started is eat fresh fruit, fresh vegies, meat, chicken (check the ingredients, though on the latter 2,) and eggs, etc. You can go to a store like Trader Joes and Whole Foods + many grocery stores now carry GF. If you are also eliminating other things, too, make sure you read your ingredients. 3) Look for terms like "food starch" (you don't know what kind of food starch), "modified corn starch" (you don't know how they modified it). 4) If it's processed, and doesn't specifically say GF, then assume that it isn't. 5) Don't get processed foods if you can help it. It's just too hard to figure out if there's gluten or not. 6) If you get GF mixes (such as cake mixes), they are usually, extremely full of sugar, and personally I think they taste grotesque. Once you start, it really isn't that hard. Good luck.

I wanted to make certain you see this, so I pulled the post down here. I noticed you mentioned that he may not have had strep, because you are Asian, and treat with herbs. I know a family who is also Asian, and the mother was treated for Rheumatic Fever until she was 21 years old. The father has severe tics and OCD (possibly strep induced). The child appears to be Autistic, and has had some severe tics (that I have seen...also with the head shaking.) Also has some OCD symptoms. I have recommended to the parents they check for strep/PANDAS, particularly given the symptoms + the family history. Check out the PANDAS/PITANDS forum. Even though you aren't aware of any episodes of strep, there are other families that also said their children never had strep (or appeared to.) When they were tested, though, they were exposed to it, and now are having symptoms. It also may not have been strep that triggered it, but rather Post-Infectious Autoimmune Neuropsychiatric Disorders (PITANDS). There is so much information about what to look for, tests to run, and doctors to see (if necessary), on the PANDAS/PITANDS forum. Good luck.

If it's not too late now, give her the whole thing. I know it sounds insane, but the pharmaicist is right.

Are you using Sacch. B? If so, the brand that Dr. K. recommends has lactose (I can't remember the brand name.) We make certain that our does not have lactose (particularly since I am lactose intolerant.) Could that be the cause of the stomach ache?

thanks everyone.

My DH's ASO levels came back elevated after I had bugged him for weeks to get them tested (both for my PANDAS kids' sake as well as his.) He has RA and mitral valve prolapse, and I thought he might have had RF in his past and/or he's still carrying around the strep bug. So, he made an appointment with his rheumatologist, and I went with him, because I have the "honorary" PhD in strep related autoimmune disease The man actually listened to the whole situation. He listened to my concerns about my DH, and that his RA might be helped by abx. He listened to the fact that my DS is getting IVIG in 2 weeks, and I don't want to subject him to possible strep when he gets home. He actually listened!!! He even asked if he should give my DH penicillin ("Is that still the medicine of choice?" he asked.) I told him that it wasn't, and that typically they are now using azith (because of immunomodulation and antinflamatory) as well as Augmentin XR (my boys take that.) He was thinking that we had to do more tests and see more specialists before prescribing, but I when I told him that sometimes the doctors take the leap of faith, and try the abx to see if it works. He said fine, and prescribed 30 days worth (suggested my DH also see an immunologist, which I've been trying to get him to do, too.) Now that his rheum. sugggested it, he's going to! His rheumatologist is rather excited by the possibility that this might work. Yeah! I'll keep you all informed.

You mentioned your dh has bipolar. Could it be strep? Has he been tested? Wouldn't it be great if a dose of abx stopped the mood swings?

We have to vote like mad, and get everyone else to vote for us, too. I have suspicion that it's getting close to the end of the month, and other groups are voting like mad!

Normally, I'd say: "Yeah, we're in 7th place", but we were holding constant at 6th for quite a while. Everyone vote like mad!

Get Dr. C. test kit immediately. We did the same, because it really is important to know. We had already tried 3 meds for bipolar, and they didn't work. My son is in the PANDAS range, and abx worked immediately on him. Also got PEX, and results have been great, but needing more (PEX didn't help him with the OCD.) We're getting IVIG for him soon. Good luck.

Again, yes. but: 1) My kids are older/had it longer, and I suspect we are on the road to "controlling" it, not "curing". 2) Tics are not as bad as they were. If PEX was available, I would definitely do it again over IVIG for at least one of my kids. The other (17 yo) has far worse OCD, and I did not find PEX as effective on the OCD. I will let you know after he gets his IVIG (14 yo in July, and 17 yo sometime in August...latter is not yet scheduled.) Where are you going to get PEX? As far as I know, no one is currently doing it.

Appeal, and call the State Insurance Fund if necessary. Insurance companies don't like to hear from the state insurance fund, and they frequently cave in quickly.