Iowadawn

To Everyone- Never will our chance be better to pull this off than if we go into June!!! It is exciting!! I would think we could get in the top 10 right away. I think we could have an awesome base of support. I am absolutely AMAZED at the behind the scenes work. We PANDAS parents are not known for giving up--a tenacious lot we are. Most of us have scraped, (been scraped!) and clawed our way to getting our kids help, I doubt we will give up now! PANDAS families are my heroes. KEEP VOTING!!! After my morning----PL-----EASE keep voting!! Dawn

OK, here goes the analyzing realist who often sees the glass as being empty or containing fluid! Could it be possible that the projects sitting real pretty- probably had a very firm foundation going in-, now are pulling out all the stops to maintain their position in the top 10, doing this by luring allies away from us? My thinking is that now is near the time to sew up alliances with others in a similar position as us--all behind the scenes, of course--for next month. Is there a way to snuggle up to some "probable" winners and at least solicit votes ahead for next month, also. KEEP VOTING!!!!!!!! I've put my protective gear on in case you want to throw tomatoes!!!! Just thinking outloud. Dawn

Vickie & all the people spearheading this: My stars! You guys are awesome. How in the world you have figured this out in such a short time and on the fly is beyond me, but I am-as are a ton of other parents-beyond grateful!!!!! Thank you Thank you!! Your leg work will pay off IF we have to go into June. Locking up the bulk of our allies before the get-go seems to be key. The massive number of comments left is a testament to your hard work and everyone's voting. I don't think there are too many or any projects w/ as many comments. This bodes very well for us. I like the midnight blitz IF we have go at it again. MANY PANDAS parents thank you! Dawn

Our son's initial Cam was very high at 184, but the other autoneural antibodies were normal. Dr. C's response was that the Cam could be elevated w/o the others being elevated and still be PANDAS. Now, the second one we had done about 3 months later (right ahead of the IVIG) had the same Cam but the anti-lysoganglioside was quite elevated this time. Dawn

First-AWESOME work on the Pepsi grant!! I am a realist and believe we will shine in the second month. (Hello 50k!) I think the first week or so in the month is crucial, and we were just getting our sea legs in May. KEEP VOTING. Get the alliances and people to back us up next month - now, and once the top 10 are out of the way by winning we can start the month already in the top 10!! See how close we are!? The hard work will payoff big. So many of the projects winning are ones w/ very few comments. That has to be because their base was sown up from the get-go. The people spearheading The PANDAS Project, I am sure, are already looking ahead and making a game plan strategy. We have tons of support. Harness it now. Keep voting & spreading the word. We WILL win for our kids and families!! Dawn

Andrea-That is pretty much what he told us with a neg IgM & very pos. IgG. His response a year ago was "your guess is as good as mine." Since that time there seems to be a lot of trx going on-not necessarily by Dr. K. He sees the correlation, but I'm not sure what else he is doing. I will re-run the mycoplasma titers in a month when we all go in for strep bloodwork for our entire family. It's some of the aggressive stuff that has been hard to leave, and myco could be the problem?? Dawn

Andrea-That is pretty much what he told us with a neg IgM & very pos. IgG. His response a year ago was "your guess is as good as mine." Since that time there seems to be a lot of trx going on-not necessarily by Dr. K. He sees the correlation, but I'm not sure what else he is doing. I will re-run the mycoplasma titers in a month when we all go in for strep bloodwork for our entire family. It's some of the aggressive stuff that has been hard to leave, and myco could be the problem?? Dawn

My son tested positive for Myco P. Dr. K said it takes a long time to get rid of it. my son still tested positive after treatment with 500mg azith. Andrea Andrea- By testing positive, was that IgM. IgG or both positive. Did Dr. K treat it? Did you have IVIG with him? I am curious what Dr. K is doing with the positive cases-particularly the high IgG and negative IgM. Dawn

We were used & abused. ^$%^#%!#$!@#^&(!!!!!! Drop'em like flies. Dirty. You scroll forever & find WMS. Two similar projects. It was bound to happen. @!@##%$@%$*^(*!!!!! Dawn

Saidie10- What does LMAO mean?? HA. Only a minute to respond. We were out to see Dr. K a month ago for our son's second IVIG. In one point in our conversation when we were discussing what to do about our denial of appeal to BCBS he responded that in Jan of this year he sat down with Dr. Swedo at the NIH. He said to tell the insurance co. that the protocol he is using to treat PANDAS is accepted by the NIH now. I think until the July 18 meeting with the bigtime naysayers (who aren't really naysayers now. Just trying to save face at this meeting IMHO) not a whole lot will change. I asked him again to make sure I heard him correctly about what to tell the insurance co., and he said that was correct. We used it, along with some other things he told us to include, handed all this off to a benefit person at DH work and 24hr later we had approval + approval for any additional treatments through Oct. PM me if you need anything. BTW-our boy is back in school after a semester away. We are steadily seeing improvement. Pretty bumpy week 2-3, but we are moving in the right direction.

Maybe it's still up because I'm so computer illiterate to know how to add the Pepsi box thing. I don't even know what that's called!! The Pepsi logo may be the problem?? Dawn

Coco-Do you know where Dr. K now stands on treating mycoplasma if only the IgG is way high? What was his thoughts with treating like you are doing? I already have an email into him. I'll avoid sending another for now. I'm doing a big Hmmm. Dawn

Coco-Thanks for a very thorough explanation. This convinced me to have the mycoplasma titers run again when our whole family ques up to have blood drained out of us for strep antibody levels. Evan's IgG was 3.96. The elevated mycoplasma seems to correlate with the aggressive/rage/over the top behaviors. I will check this & also ask Dr. K. where he stands on this now. Dawn

I just posted on the OU site & there are a couple more posts asking for votes from moms that are on the wall!!! I can feel the excitement!!! dawn

Coco- I started a new thread because I didn't want this to get buried in your school thread. Oh.....we had a school/IEP/return to school fiasco today. I am hurt and mad because it didn't have to be. Too close soI don't want to relive it right now!! I feel for you. What I did catch that I want to ask about is "when we treated the 'old' mycoplasma infection with Biaxin, things really started to get better" after IVIG. Explain. You saw Dr. K. what kind of "old" mycoplasma did you have? WHat kind of titer results? Evan's IgG was very elevated, but IgM was negative. about a year ago, Dr. K didn't know what to do about this. I have wondered if he has missed really taking care of this and Evan should be on Biaxin. He had his second IVIG 3 weeks ago. We are starting to see some really good successes. I'll coment more on this at another time. Just wondering about your "old" mycoplasma infection. Thanks! Dawn

We can do this!! We are gaining each and every day. Just an early(late) morning observation. It would appear that a number of groups have their votes all tied up ahead of time--look at the number of comments left in the 50k category. These groups, I suspect, are not sending votes to others because they don't "need" to. There are a few groups above us, that like us, are getting a lot of comments. I am not sure what to do with this, but just an observation. It would be beneficial to really hit the networking. Think neices & nephews. They are the ones who are really into the facebook thing. Aunts & uncles. Cousins. Your church or place of worship. Maybe I need to go to bed. You can chew on this in the morning. We are doing great. Slow & steady wins the race. A little turbo boost now and again to get ahead of groups resting on their laurels would help, too!!! Happy Monday. Dawn

You took the words out of my mouth!!! I got madder & madder the more I read!! 100 years and doctors act like we're nuts!! Tell me there hasn't been some cover up going on. THIS STINKS!! Dawn

I'll take a stab. First, not everyone gets an immediate response. This is from experience and from others I am in touch with who are patients. He says he wakes up to about 45 emails (I'm guessing PANDAS) a morning. Are you technically a patient? Is it an appt you need? If he has already seen you I think he replies faster--but from experience, not every email I've sent has gotten answered or replied to. If you need an appt. just call the office & get one set up. I don't think he grants appts., per se. Has he stated that your child could/should be seen by him? He is out of the country quite frequently, and sometimes that's when emails get missed, or I'm guessing triaged when he returns. Keep your emails to the point. Try not to put multiple requests or questions in the same email. Or, better put, don't ask anymore than you really need to. Just some thoughts. His PANDAS clientele has exploded and keeping up has gotten tougher for him. Dawn

WHEW-HOoooooooooo!!!!! SLow & Steady wins the race!!! Just a little survivor idea---I noticed a couple local (one was a school 12 mile away & in the top 10 in the 5k!) or close by worthwhile projects doing really well. I voted local and left a note about PANDAS that we were a "local" and to encourage them to vote for our cause. Just an idea. Keep marching toward the goal. We can do it!!! Dawn

Wendy- Thanks for sharing this!! There might be something in here for Buster. I still have my tonsils. I had a nasty strep infection throughout my body, as I am told, about 40 years ago. The family doc was baffled as to what was making me so ill. A referral to a big-time specialist at the time--pediatrician yielded a positive throat culture and a stint in the hospital for a week. I have had psoriasis for as long as I can remember. Very interesting article. Dr. K is having us wait two more weeks before we run titers on our family again--by then we will be off zith for 2 months. He commented that he is nervous. After this we'll decide the next step. Buster might be able to decipher if there is anything new that relates to PANDAS in this article. Dawn

What a SWEETHEART your boy is. Makes me want to cry to think of what he (& you) are going through. Prayers go your way as you seek out treatment. Dawn

1Purple-Peep----I meant to say: I love your "name"!!

Unfortunately--WELCOME!! IF (I said IF) your child has PANDAS you have the distinct advantage of getting right on top of it. So many of us have gone YEARS. SOoooo.....I would waste no time in consulting/making an appt with one of the PANDAS docs. They can be found on the forum Get an up or down take on your son's symptoms. Don't waste your time trying to educate a doc. In the meantime, learn all you can learn. If you can get a family doc on board early this beneficial. My bit advice is to run, don't walk to the PANDAS doc of your choice to get their take on the symptoms. Whether it's PANDAS or not you need to know so you have a proper treatment plan going fwd. Best wishes & prayers. You are a sharp cookie!! Dawn

Mom md- I am going to PM you. We have BCBS in Iowa. We have been successful--this last time with the help of some info to include from Dr. K. We are lucky that we had the benefits person at dh work use the work's insurance rep, who rattled cages at BCBS and within 24 hrs our final appeal was reversed and we were approved for any additional IVIG's we would need until Oct (year mark of the first one). I will PM you. Dawn

Elizabeth- We are scheduled to take Evan to Chicago for a second IVIG next Tues. You may, or may not remember, we were a family with incredible titer results-we discovered 2 1/2mo after the first IVIG, when Evan spiraled. It was at this time that we figured out our 15 yo DD had the adol version of PANDAS. We discovered last month our titers skyrocketed despite abx. We now have all been on zith for a month. About a week after we all were on the zith Evan kind of picked up improving where he had left off before the spiral in Dec. The first IVIG was covered by insurance; we are in the appeal process for the second pre-auth. Not holding my breathe. Praying, but not holding my breathe. Question: How long did you keep your DH &DD on zith? Dose? Dawn