amyjoy

Thank you all for kind words and wishes. And you know, while it looks like something amazing that i pulled off (oh, well, of course it is:) ) BUT I am 100% sure that any one of you would have done the same. Look how hard we must advocate for our children, just to get antibiotics, for heaven's sake. Its SO wrong. But in my heart I knew there was absolutely no way I was willing to let Lance's life go by, untreated. He is already 14 1/2, 6ft tall and has been sick for nearly 5 years. One more minute could make the difference of being an untreatable case, or a chronic case, better put. What WOULDN'T we do for our children??

I think that having her use Florastor, or some concentrated form of s. boulardii, is really important, since by nature the antibiotics will wipe out most antibiotics she takes. Boulardii can usually hang on and keep some form of lactofermentation going on in the gut. Metagenics also makes a good probiotic blend with boulardii and l rhamnosus you can get on line and use after the florastor, called Proboulardi and is super concentrated, many billions more than you can get in the health food store. There are probably a lot of options, totally ok to use the capsules instead of the powder if she won't take the powder. good luck with it.

We are still completely recovering from the fundraising benefit my friends put together last weekend to raise money for DS14's IVIG, and awareness of PANDAS. It was an absolute success and completely restored my faith in the holiness of people and our shared humanity. The community turned out en masse, I was and still am absolutely flabbergasted. We had at least 200 people come throughout the day, and over 70 auction items were donated from local businesses and people in the community that were moved by DS's story. We had entertainment the entire time, from local musicians and magicians, juggler, high school kids' rock bands, teen artists doing face painting, 4 tables spread with a magnificent bakesale and people were bidding and dancing, eating and painting and singing and it was joyous and shocking and nervewracking and amazing. We talked about PANDAS, i did a short presentation on it and we also had a corner with info and a laptop randomly playing pictures of PANDAS mixed with info about PANDAS. Talking about PANDAS to a large group of people had me really thinking about distilling it down to its most fundamental aspect. I had everyone raise their hand if they had ever had a strep throat or knew someone that had a strep throat to start, and explained that that is exactly what happened to Lance,a strep throat gone haywire. I think it helped to normalize the process and the person, and to help people realize that this could be any of their children as well. When we first got there, DS was afraid to get out of the car, that people would see him as a loser or a charity case. We had been preparing for this, for weeks, and it helped him to realize this is not just about him, that PANDAS is in this big gap of knowledge and insurance coverage, and that there are hundreds of other kids and families in our same position. That helped him, and then after a while, his friends went out to the car to hang out with him and eventually they brought him in, and he did great and was so appreciative of at least 30 kids or more, actually, probably 50, coming to support him and being really nice about it. The other thing that helped incredibly was a mom and her DS13 with PANDAS driving all the way up to our little town from their home, like 3 hours away, for the event, to support my DS. And the way its turning out, these 2 children will be recieving the IVIG together, in my office on Tuesday and Wednesday of this week. They made a wonderful connection, both of them have tics and a similar manifestation of PANDAS, and this mom who made the journey is amazing and i was so honored to have them. We raised over $6100 at that event, and with that and what we've been able to fundraise prior to the event, we have enough to treat DS14 with IVIG. Saying that i'm grateful is barely scratching the surface of how it feels. SO, the ground has been broken. I hope in some way, this gives hope to any of you that need it and i'll be happy to support any efforts you find you have to make in this area. Thanks amy

My understanding of low IgA as it relates to recieving IVIG is this - some people have a low IgA because they make antibodies to IgA, and these antibodies can react to IVIG because there inevitably is some amount of IgA in with IVIG. This can create anaphylaxis. The question can be resolved by testing your child for antibodies against IgA. Also my understanding is that in children with antibodies against IgA, their IgA levels are exceedingly low, much lower than your child's, but as all children are different, they should all be checked. Some IVIG contains a guaranteed less amount of IgA, the Gammagard is one of those, and I've heard some kids receive gammagard instead of gamunex for this reason. There are also other reasons for low IgA, in particular low gut immunity, so it would be good, once you test for IgA antibodies and find that is not the case, to take a good look at supporting his intestinal environment. I hope this helps, good luck with everything.

Like many, we have been dealing with an insurance gap. My DS14 really should be treated with IVIG, and we just don't have that kind of money any more. So, our friends in our small community are putting on a fundraising event, this coming Sunday afternoon. Aside from the fact they literally had to twist my arm to go for this (it was more like, this train is departing you better jump on or be run over...)over this past month, they have been mobilizing a mass effort through our community to do this event, complete with entertainment and an auction and a bunch of stuff. It has been very humbling for me. My DS, a freshman in high school, was very upset about it at first, and certain it would mean "social suicide". But our friends said, you just better get over it because its more important to us that you are treated and well than any thing else. So we've been processing it, and so has our community, and the kids also, and there has been nothing but outrage at the system that put us in this position, and kindness and acceptance towards DS and a desire to help. Its hard to take it in. DS understands that this event is not just about him, it is about all of us, and all of our children who need treatment yet are turned down by insurance. So he decided that he can take on this event, as a child with PANDAS, representing all children with PANDAS, and we will do some education and handout information about PANDAS at the event. He will even play drums in a little rock band with a couple of his friends. And he is committed that any money left over in the fund be given to another child with PANDAS who needs help. Kids naturally have big hearts. He was wondering if by any chance, any other children with PANDAS might be able to come to the event for moral support, so with the encouragement of a mom on this forum, I am putting it out there. I hate asking for help, and i feel like I'm really using up alot of my quota right now, so this is hard, and plus, we live quite a ways north of SF in Sebastopol, out side of Santa Rosa. But if anyone is inclined to join us as our guests, it would be an honor to have you, and here is info on the event: www.helplance.info Thank you for all of your help, every day, and for reading this post. Blessings to you and your children amy

one of the things that happens with food coloring, is that some of the dye molecules can interfere with the absorption of nutrients. for example, yellow dye #5, tartrazine, binds up the receptor site for vitamin B6 so makes it hard to assimilate that vitamin. other dye molecules have their own peculiar chemistry that may interfere with other similar reactions. Some of them are related to allergic reactions or sensitivities like blue #1 and #2 because when the body goes to break the dye down, some of the chemical intermediaries are really hard to process, especially in someone with any kind of liver processing issue already, or challenged digestion. hope that helps.

That is the most wonderful thing I have heard in a long time. You all deserve all this joy, and so much more. Congratulations.

we don't have lyme.

Congrats that is so encouraging!!

Thank you very much. rapid streps were neg, we are both on zithromax. and by tonight my white patches are gone. ds's sore throat was pretty much gone by this afternoon, and those glassy strep eyes, i hate those, they are almost gone. Usually he is on zithro 500mg, but we had him off just for a week or so, because he has celiac and some gut sensitivity, overall, and i wanted to spend a few days fortifying that GI barrier. but look, in just not even a week, there is the strep rearing its uninvited head. Thank you for the info on OLE. That's something that can be done every day, right?

The other day i had a little sore throat, i looked in there, just looked a little red but it was bothering me. Last night, DS said oh my tics are bugging me tonight!! and i thought, hmmm, i wonder what else will show up? So this morning, he woke up glassy eyed, sore throat (i couldn't see any white patches but...) not feeling well, that look. Well, my throat is still bugging me also, and i just looked in the mirror and i have 2 white patches in the back and tonsil area. More than likely, strep...how did that happen?? I know it says in this forum for all family members to get tested, so, this is a wake up call for me. Maybe it occurred to me to also get tested for strep with titers, i never did just to save a few dollars, and now i just have to wonder how big my contribution is to this whole thing. Not like, beating myself up, but, a whole new piece of information to consider.

YES now i'm obsessing over...what is that drug they're talking about?

my DS14 had great improvement in tics and mood with burst until around day 18 or 20 when tics came back. i'm not sure they were worse at first or just felt worse, after not having symptoms for a couple of weeks everything was ridiculously normal at home and then...the tics came back. We started an antiinflammatory neuro protocol of supplements i do believe help since this time, using something called Avipaxin by neuroscience, a humongous amt of omega 3, inflammaway by natura, and glutathione/methylation support, and lots of minerals. it does seem to be helping, while we are working on the $$ for ivig.

Hi There! Most of the time "soy protein" DOES contain gluten, unless it specifically says it does not, or, if its tofu, or tempeh. Soy proteins, like the veg sausages and mock hamburger meat and "foney baloney" you can buy in the supermarket, DO contain gluten which, because of its sticky nature, helps to hold it together. In fact, if you look at the ingredient list, it specifically says wheat gluten or vital wheat gluten, and i have no idea why they call it vital wheat gluten. my DS 14 with PANDAS also has celiac, and we were recently reminded of this exact thing, when he was at some gathering and they were having veg tacos using "soy protein" and after just a few bites, within 10 minutes, he could feel something, and he asked the people if there was gluten and they were like no way, its soy protein. and then a half hour later he asked them again if he could see the label because he could feel it, and yes one of the ingredients was the addition of gluten, to make the soy protein more of a meaty texture. i have a great list of gluten-containing foods including hidden gluten, which is way too long to post here i think, but if you PM me your email, i'll be glad to send, in case that helps. Good luck!! amy

Yes, I hear that! Before i knew about this forum, i was so isolated in the struggle i thought i was going bonkers. well, i think this kind of situation could make any one feel that way. And you know, to hear you paid so much for the IVIG, and know that your provider then made $50/gram - per gram - on your child's treatment!! i have no problem with people making money and charging for their services, at all!! But being taken advantage of inside of a system that is fighting us every step of the way, that's just plain wrong.

My son had a not-good reaction to xanax when we used it, when he was 10 and first started ticcing / anxiety. of course everyone is different, i would start with the smallest amount and go up slowly if nec and nothing else is working.

I hope this is ok to post. It is NOT a solicitation, but information that I would want myself if someone knew about it and i needed it!!! I am a mom of PANDAS DS14, we are struggling to raise money to get him treated with IVIG - he needs 190 grams at the tic dosage of 2gm/kg, and he is 6ft 1, nearly 200 pounds. That's $12,436 just for the meds. You know what i'm talking about. Every day families like me on this forum are at wits end trying to juggle and manipulate the insurance companies and find a way just to afford our children's care. This has me livid. I am also a nurse practitioner in a progressive practice in northern CA and I just want everyone to know, that as a solution to this problem and to open the door for treatment for more of our children, we have started doing IVIG/gamunex for PANDAS children at extremely modest cost. First of all, I can order the medication at a discounted rate of $72/gram which I've been told by our rep is the lowest rate available and we do not mark this up, as is typically the case, but pass the exact cost directly on. Second, we do the entire both days of infusions including all pretreat meds, nursing care and supplies, for a total of $3500 inclusive. This is not for shoddy care, btw!! Anyway, if this makes IVIG more possible for your child, just let me know. If this is overstepping the bounds of this forum and is construed as a solicitation, I'm sorry and expect this posting to just disappear, or i will receive a notice saying this is not a good post. I just want this information out there so am taking a risk. All of that said, i still cannot even treat my own son, yet! We have raised $5100 towards our goal and i pray that by the holiday break, he will be treated.

We did years of OT, before we knew that my DS14 had PANDAS. I have to say, it did help him alot at the time. It helped him to manage his focus on handwriting and spacial awareness whether or not he was having an exacerbation. We did a bunch of different kinds of OT, in the therapy room, something called "outdoor sensory adventures" that was amazing, plus we blended OT with PT on horses and did that for 2 years. DS has problems with coordination both large and small motor skills, gait and balance are off and he struggles with a trunk ataxia, sensory problems plus tics OCD and intrusive thoughts. I can't say how much of it stuck or didn't stick, but i can say it made his life incredibly better and integrated his care throughout. I can't even picture what would have happened had he not had that support. However, had we known the true diagnosis, maybe we would have done less at the time and focused on the cure. Of course at that point had we been lucky enough to know he had PANDAS we would have still had plenty of resources left to pay for IVIG and be talking about this so not in retrospect. All of that said, OT really helped alot, alot. And i must add a great ps to this, as we have not yet done ivig, but last year when we discovered that my son had big time celiac that was missed on a prior blood test (blood testing for celiac is so innacurate), and we went gluten free, a huge layer of symptoms diminished and completely changed his symptom baseline including all this coordination stuff and even his tics. I think there is so much inflammation involved in celiac it adds to the already inflammatory stuff from the PANDAS. sorry if this got rambly.

Well that gives hope to the rest of us. thank you for the update.

what state do you live in? if anywhere in california, then i will be happy to write an order to the lab for you!! i don't know about out of state, though...well, i may have a couple of ideas depending where you live.

my ds14 has predominantly tics as well, which came back really hard after the steroid burst last month, and we are waiting to raise enough$$ to treat him with IVIG. In the past hardly any one thing ever helped the tics except for when we started with numerous cranial osteopathy sessions that helped immediately, and then once we found out last fall my son had severe celiac and dysbiosis and methylation problems and went completely gluten-free, that super lowered the tic baseline, but the tics still did their thing. we did steroid burst in August that really helped for a couple of weeks and then tics rebounded back pretty strong. So this is what we're doing per our pediatrician, all of them together, in the meantime that have really diminshed his tics to where he isn't so bugged at school and can mostly fall asleep at night (but everyone is different) -Avipaxin by Neuroscience, specifically to reduce neuro inflammatory cytokines -inflamawy by Natura, works through many pathways -chinese herbal thing called Coptis Purge heat (i think the rashes almost completely also went away when we added this one a couple weeks ago) -a liver support (methylation and glutathione inducer etc..) called Detox Antiox from designs for health. fish oils anyway its handfuls it seems, but help during this gap time. oh, did i mention not cheap either??? good luck.

Hi Vicki I could be wrong (wouldn't be the first time:) ) and i thought DP told me that cunningham's lab was getting some NIH funds? Also, the last couple of kits I gave out from my office, from the most recent batch that Kathy Alvarez had sent me, had different paperwork that asked for donation but not payment exactly, it looked different. Also one of the moms had spoken with Kathy and her impression was also that it was donation now, not payment. Anyway i guess i could have misunderstood all of this, but, i think i'll email Kathy just to be sure one way or another, how about that? and then i'll post the info.

Sounds just crazy hard, so sorry you are going through all that. my understanding is that plasmaphoresis works especially well for the chorea / tic issues.

I believe there is leniency in the payment for the cunningham tests, as she received a grant. They ask for a donation but its ok if you cannot pay anything.

usually when people come into my office with molluscum, if there is alot, we dab a bit with wart treatment. if there are just a few, we break them open with a pin or sharp thing, and squeeze out the little white waxy core, that's how to get rid of it, then wash really well. if you just open the skin right on top of it, and squeeze it out gently, it should heal without a scar. If you don't get the core out, it will probably grow back.