peglem

I'd jump for joy anyway...if it comes back, there will be time to grieve later! This is where I'm at...a lot of times progress has been stolen back away, so my philosophy is to celebrate whenever I can, no matter how briefly!

My daughter's pediatrician sent me home with some swabs and tubes to put them in...so if I feel it needs checking, I can do the swab and bring it in to the office. They'll send it out for culture.

Here's the Swedo paper: http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf and here's the 4 adult cases- this one was done in Turkey: http://www.turkpsikiyatri.com/en/default.a...icle&id=592

Okay, the immuno appt. was strange, but good. When we saw him 2 years ago, I felt like he thought I was a crazy woman- TMI, as in too much internet. We were sent away with no results...told she was all good and it was implied that we should just accept that she's autistic and there's nothing can be done about it. Today, was like, "Oh, I have an associate in this office who is treating a few PANDAS kids with IVIG. I'll talk to him and see what he thinks. Let's run some tests. Low ASO/ antiDnase don't necessarily mean there was/is no strep infection. Let's check and see if she is maintaining immunity." He called Allie's ped. and after talking to him, said that the rheumy, the ped, and he would get together on a treatment plan. He thought that it made sense to do plasmapheresis 1st and then follow up w/ IVIG....if we can get the rheumy on board with it. 'Course, 1st he wants to see how her labs come out, so nothing definite yet. But I feel like, if the labs come back showing nothing, I can at least say- well you know something is going on here, help us figure it out. Yesterday we saw the rheumy. I'm getting the impression that word IS getting out in the medical community. Compared to the reaction I got 2 years ago from these same specialists is like night and day. The rheumy still seemed a bit reticent- used the "controversial diagnosis" line...but I think after reading the Cunningham stuff, the mouse model paper, Swedo's PEX/IVIG trials, the paper on the 4 adult cases treated w/ PEX, and talking with the immuno-maybe he'll come around! Oh, he said he'd call Dr. Cunningham, too.

Stephanie, Just to add about the RDI- If you feel like your child's development was interrupted..RDI is the treatment. Everything else I've seen, over many, many years is a form of behavior mod. But, RDI addresses development. They will assess where your child is developmentally and coach you to guide his development in a clear, sequential manner. I don't make any profit from this (in fact, I'm incurring considerable expense), but I'm very excited about the progress we've seen with RDI, compared to the stagnation and regression we've seen with other programs.

If the sores in the nose persist, have it tested for MRSA (methicillan resistant staphylococcus aureus)- or if you get it tested for strep have them check for that, too. Its very contagious!

My daughter had T&A. She was on omnicef for a month prior to surgery, and did 10 days of augmentin after. A month later we had the biggest exacerbation ever (and we've had a lot of those). My daughter did not have infected tonsils, though- we did it to try to eradicate the strep. On the plus side- she's had very few sinus infections since then- they were chronic before.

RDI (Relationship Development Intervention) is based on research in human development- mostly early childhood. They have extensively researched what fosters development and their program amplifies and focuses on actual development, instead of just dealing with things behaviorally. Here is the website: http://www.rdiconnect.com/ Behavioral therapy (ABA) does not work for my child. This does.

My child attends a private school for special needs children so our situations are quite different. However, I think it may be time for you to have a discussion with the school about modifying things to accommodate his medical needs. I wonder how he would do with online classes? Many states offer online charter schools...just a thought. If work means there would be nobody home supervising during the day, then that's a whole other issue.

You are not dense, this stuff is very confusing! My daughter has tested positive for strep while on prophylactic abx. I understand your worries about exposure to sick people...ugh, tough choice. I don't suppose you could convince them to send the nurse out to the car to get the swabs! Heh, drive-through strep tests, what a great idea! If your son is in an exacerbation, it is a perfect time to get the Cunningham blood draw....except, of course, the actual draw is more traumatic!

Thank you for the prayers- this rheumy tested ANA last time we saw him, it came up negative.

Thanks, I was beginning to feel like I threw a party and nobody came. So, they took serum (blood) from 3 groups: 1) kids with tics, but no strep infection, we'll call them T for tic. 2)kids with active strep infections,but no tics- S for strep 3) kids with no tics or strep infections- H for healthy They tested the immune response of the serum to like 100 antigens (markers on the bacteria surface that cause the body to produce an immune response) of GAS (group A strep). The immune response of T & S were similar, except that the immune response of T was more pronounced than S. So the tic kids' serum had a strong immune response to strep antigens, even though they did not have strep infections...AND the response had no correlation to ASO titers which are being misinterpreted by many doctors, who try to use low ASO titers as proof that children have not had strep infections.

Okay, an excerpt: Bolding mine

Thanks. If any of you are prayer-type people those are much appreciated, too!

Another thing I noticed, on all the sites that tell information about the ASO test, it says you should not eat for 6 hours prior to the test....something about Beta lipoprotein affecting results. Has anybody ever heard of this? Nobody has ever mentioned to me that this was supposed to be a fasting test!

My tonsillectomized daughter has had numerous +strep swabs after tonsillectomy.

http://www.plosone.org/article/info:doi%2F...pone.0006332#s3 If I'm understanding this right- they tested serum from kids with tics-no GAS infection, kids w/ GAS infection, and kids w/ neither of those, for a wide variety of antibodies to GAS antigens. What they found was a huge similarity between the tic & GAS kids, AND the tic kids had a higher and more robust response than the kids with current infection! What do you think? Am i understanding this right?

Lyme has never been suggested or tested for us, although, I have privately wondered about it.

My daughter's ped referred us to the rheumatologist. We had the appt. this morning. A few years ago, this rheumy dismissed us, saying my daughter is just a strep carrier and not PANDAS because the ASO & Dnase titers were not elevated. But this time the Cunningham studies and Allie's results were sent for him. So, we talked...about lots of things. He admitted he doesn't know very much about PANDAS...I shared some of what I know about the Cunningham work and successful treatments...That I would like to do Plasmapheresis 1st, and that we are scheduled with the immunologist tomorrow. He ordered some bloodwork--those darn ASO/AntiDnase again! (she always tests low). He said he needs time to look at the studies-I also gave him a copy of the mouse model paper, Swedo's plasmapheresis/IVIG trials, and that turkish paper w/ the 4 adult case studies w/ PEX. We'll go back in 2 weeks....I've been and will continue to pray very hard about this. I feel encouraged in that he admitted ignorance, but seems open to learning about it....Hey look at me, I'm a medical professor now!

I'm kinda in the same boat you are....my daughter's PANDAS begin very early- before age 2. It has drastically altered her early childhood development and all subsequent development. So, my judgement of treatment effectiveness will be, is she getting better-moving in the right direction. At this point (my daughter is 15 now) I don't expect normal, but I sure do expect that she will began to make some progress developmentally, to regain some functioning that was lost to her. Treatment will only remove or reduce the impairment...the development/learning will still need some help- therapy!

Worried dad is seeing a good response to a "Sammy" dose of augmentin, I think. And it seems like somebody else just recently. You make a good point and I'm going to look into this with my doc. My daughter is on zith, and her doctor worries about liver damage, but I'd be willing to switch to high dose augmentin (for a trial) if he feels its safer.

I'm pretty sure SC & RF are caused by GABHS. Maybe I need to double check that?

It seems like we need a template for parents to fill out and then a way for that info to automatically be added to the spreadsheet. Chemar? Is there a way to do that here?

You know, I felt the same way when I had my daughter's done...so many, many "professional authority" types have said no, not PANDAS...and she was not in an exacerbation when she was tested (at least not an extreme one- her "baseline" is so high now.) And she had been on phrophylactic abx (apparently not high enough- tested +for strep Sept. 1st)....she tested above the mean for Sydenham's chorea...

I'm glad you're starting to make sense out of it! That's a big job! My daughter's pediatrician is willing to read studies and become educated...he's a gem. But, he needs (especially for PEX/IVIG) specialist confirmation for treatment (okay, he's fudged that a little). We tried a couple of years ago to get the help of an immunologist and a rheumy. The immunologist wasn't much help at all. The rheumy was a tiny bit of help- He said he didn't think it was PANDAS because her ASO/AntiDnase titers were low- he was misinformed- we had TONS of symptom exacerbations w/ +strep cultures. BUT, he was willing to put her on prophylactic antibiotics-which her pediatrician used as confirmation that he could go against protocol and provide for her prophylactically. We had the Cunningham work-up over the summer- shared the results with her pediatrician...who was soooo excited! Now it all makes sense to him. He talked with Dr.s Cunningham and Latimer....once again though, we need those specialists to get PEX and/or IVIG. So tomorrow, I'm going back to the rheumy and Tuesday we see the immunologist....I'm praying sooo hard to find the right words to help them understand. Her pediatrician will do phone consults with both during the appointments, because he says if I tell them, they'll just think I'm crazy! I think he's right about that! I'm trying to be brave!