JAG10

Well said! With regard to the name change...... we will have to let go of our panda pix/cracks....... If they go with PAN Complex......... perhaps we too will have to be flexible and change to a cartoon of a mother hitting her child's idiot doctor over the head with a PAN and a bubble saying "I told you so!!!!!"

I think we all need to go knock on his door- what an A$!!!!! I have seriously thought about calling him.... I have been so fortunate because ALL of the Doctors I have seen believe it exists!! I can't imagine dealing with Dr's that don't believe you on top of the horrible things we deal with with PANDAS....I think we should all drop our kids off at his house when they are in exacerbation and see what he thinks then! Give them a strep test and have them watch them get better on abx and steroids..... He should see the difference in my ds! AAAAUUUGGGGGHHHH! Brandy Brandy, Did you remove three of your recent comments from youtube or was it someone else? I hope there is news coverage of Dr. C from Pepsi that can be posted on Youtube and tagged right on top of this guy!!!!!!!

Brandy, OMG!!!! What an uneducated jerk this guy is!!!! If he says "If panda even exists as real" one more time I'm gonna spit!!! And then the nerve!!! "Who is your Dr. Cunningham and what is her education?" Sorry, not to sidetrack your beautiful news, but I saw your name replying and trying to set him straight. HE NEEDS A PANDAS PARENT INTERVENTION!!!!!!

Yes, I feel you dancing...my laptop was actually bouncing as I read your simply beautiful post!!!

This isn't scientific at all, but I work in an elementary school and September can be brutal for illness too for both children and adults. Every year I hear colleagues get annoyed we just got back to work from the summer break and they already need to use sick days. Last year was different though, H1N1 hit our area in the beginning of October. Suggestions of contacting the go-to pandas docs for support seem wise. They are all so over-worked, they should welcome getting another IVIG prescribing doctor on board!

Kelly, I hope the TV thing works out. I would imagine from Pepsi's point of view, some causes make for better PR and television than others. Lord knows we have all had some good chuckles comparing the worthiness of other causes compared to what our kids and families have been through (those poor lemurs.) Hopefully the coverage is substantial, gets the attention of the University and the alumni and anybody with deep pockets. Is there a way to somehow get the reporter to tag on there "If you would like to donate to further add to Dr. Cunningham's PANDAS research go to ......." ???? What could you put? Lynn's org?

AAAAAAAAH! How thrilling! And God bless you willing to go on TV!!! Tell them no 50 cent tour for you! YOU want the $50,000 tour!!!!!!!!!

Augmentin, she is 10 y.o., 5'1" and 87lbs. Tall girl so when you add behavioral regression to a girl who physically looks older than she is, it's worse. Thankfully, it's getting better and better. She is now the older sister to our 7 y.o.; the condescending tone may not be welcome by little sis, but it is music to my ears!

Yep, there were questions about rheumatic fever on their medical update form. I wrote a note to attach to the form since PANDAS doesn't quite fit a "check the box" form at the moment Dr. K wrote back to up from 250mg to 1000mg 2 days before and 3 days after.

Hey Melinda! Good to see you get on here! Small world story; back in May when proxy votes were still Kosher, Melinda was going to be away from the internet for the weekend and contacted Kelly to have someone vote for her. I said I would do it and Kelly gave me the phone number to which I raised a hairy eyebrow and said "that's my area code!" Well, it turns out we live 15 minutes from each other!!! We just got back from our Chicago trip and I'll try and give you a call over the weekend. Jill

Hi Friends, We returned from our 5 day trip to Chicago (if anybody decides to drive from the north east coast, Cleveland is a good halfway point and Metroparks Zoo is FANTASTIC!!). DD10 is now 9 weeks post IVIG and we went for a follow-up and once-over for my younger dd7 while we were at it. Dr. K was VERY pleased/giddy with Court's progress at this point! I've posted that I'm pleased too, but it is reassuring to hear it from the doc who sees so many. We talked about expectations clinically and our setting expectations for her academically. He felt my younger daughter was fine, but giant tonsils and adenoids that need to come out. Dr. K discussed the importance of treating infections in anyone in the household aggressively. How OCD is Court's sore throat for strep or infections and to be vigilant. So, it was interesting what happened at the dentist today. Both girls had appts for check-ups. I updated the medical history and was fully expecting the weird or vacant looks regarding IVIG/PANDAS. To the contrary, I was pleasantly surprised! The dentist examined her, but would not let them clean her teeth. She said she needs sealant on a 12 y.o. molar, has one cavity and a few primary teeth ready to come out. She said she would not clean her teeth or do any dental work without her abx being increased. She said "She's come too far to mess this up now!" That was almost verbatim what Dr. K said on Monday! So, she wants him to fill out this form either with him calling in an increase to her abx for cleanings/dental work or write down the abx, dose and duration and she'll write the script. She must have some experience with PANDAS bcs when we were leaving, she patted my back and said "Good job, Mom. I know this wasn't easy." Moving mountains one bucket of soil at a time.... it's true, that's what we are all accomplishing. Jill

When you mentioned lower back deterioration.... is that the same as degenerative discs? My mom and sister have that, don't know about any of the other things you mentioned. My husband's father had MS and his mother and sister have thyroid regulation issues, so I assumed that was the auto-immune connection.

Those who attended the OCD conference mentioned talk shifting toward or back to casting a broader net of those infectious triggers that tend to linger. Was there any mention of this idea of toll-like receptors?

East Coast, the segment is on now.

Forgive me if you've already posted this, but what prompted you to run blood tests on all your children, your spouse and yourself? I just cannot get over how many posts there are of parents with elevated strep titers! Please also share if you and your husband had any symptoms at all. I saw my ophthalmologist this morning and asked him about pink eye as it is the only thing I can think of as a possibility for myself. He said most pinkeye is viral.

My initial reaction when reading your post was...What? Wait a minute, that's what I'm trying to get rid of! That silly, goofy, or stupor demeanor. I look forward to watching tonight with an open mind and sympathetic heart.

Big Pharma.......Insurance companies.......the whole IVIG shortage angle....child psychiatrists.... No shortage of stakeholders with incentive to push back.

A white paper is an authoritative report or guide that often addresses issues and how to solve them. White papers are used to educate readers and help people make decisions. They are often used in politics, business, and technical fields. In commercial use, the term "white paper" (or "whitepaper") has also come to refer to documents used by businesses as a marketing or sales tool. Will it be put out via NIMH??? That would be pivotal, yes? Or does it have to be a study in a refereed journal to get the medical community nod?

What is a "White paper"? Where is it published? Sounds like the White Album, White Rabbit, White-washed........

Wow.... That post was a month ago? Seems like a lot longer than that. I say we let Kelly and Vickie pick the date. Lord knows they have some wild stories to share about other causes plotting and scheming..... Kelly sounded like she was running to the airport, so I don't know when she'd be game? Wish there was a way to turn the board private to members, just for a night Jill

Can someone explain how the codes basically work? Is it PANDAS that would get the code or "encephalopathy of viral or bacterial origin", "post-infectious encephalopathy", something like that? Does Lyme Disease have a code or is it several codes listed like "tick bite xyz"

That's interesting. Are we sure it hasn't been looked into before? What organizations would we need "blessing" from? For example, in the March minutes 2010, a proposal for a Fluency Disorder code was made and this was endorsed by American Speech-Language/Hearing Association and the American Psychology Association. Whose endorsement would we need??? American Pediatric Assoc? neurology? immunology? psychiatry? Each individual association? Would we need an OCD or Tourette Foundation endorsement?

Good Luck Trudy!!! Let us know how it goes all around. No matter what happens today, we're NOT going to let up on Independence BC/BS! We will keep after them and keep after them until they cave by whatever means necessary. We'll continue to recruit our state politicians, we'll use the local media, we will not stop and (I know he needs help YESTERDAY) we will get them to cave eventually. We won't stop, we won't quit, whatever it takes, whether they realize they should either do the right thing or they realize we will cost them more in grief and bad PR, they are going to provide payment for the service that is medically necessary for our children!

Ditto! HELLO??? Age of ONSET???

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son. Please know that I ask this with the utmost respect and sincerity to those of you who are dealing with this dilemma. I know I can be fresh, but not in this instance. Is it the risk or money that gives you pause? Both are totally valid considerations. If (everybody cross your fingers right now) we get to a point where all insurance covers all treatment options for our children, how would that influence your thought process? Some people view IVIG as a substantial risk and others...some risk, but not that much. If you knew it would be paid for in totality, would that sway you toward giving it a try? For me, with my younger dd7 in mind (who I'm on the fence about re:dx) I would have to see interference in typical, daily functioning to consider it, even if it is no cost to the family. Looking at that silver lining, I would already know what to expect having gone through it with my older girl for whom I had no doubt in my decision. To be honest with you, in my case, it is not the personal out-of-pocket money that holds me back. My son has mild immune deficiencies and I think Dr. B would get it covered. If he needed it and it was not covered, I would still give it to him... so I can honestly say it is not the money in my case. I do have concerns, though, about using medical dollars unnecessarily. Let's face it - just because insurance covers something it is not free - it just means that we all share the cost. I really make a conscious effort not to waste insurance dollars (I know that probably sounds odd- just a part of me). I also have concerns about using a donated tissue product unnecessarily. I don't want to be using IVIG on my son if it is not helping when people donated that blood to help people who really needed it. Does my son really need it? Should we be saving that for some of your kids who are much worse off? Again - I know that is very odd but it is something that I think about. That being said... I honestly have slight concerns about the safety - though they are no more than the concerns I have whenever he has had a vaccination or when he has had surgery, so I don't think the safety is the issue for me either. I think the biggest concern for me is stirring up the pot and making things worse. I worry about turning back the pages and not having them turn forward again. I worry about putting him through an exacerbation without any long-term benefit. If I did IVIG I really don't know if he would be any different than he is now. He has had this for so long I don't know what "baseline" is for him... and -honestly- I can accept him as he is right now and work with it.... But I think about what SF MOm says about not settling for anything less than "normal" and I don't want to sell him short. He is 13 now so I feel like time is running out. Only 1 more year until High School. Right now I am reveling in the relative "normalcy" we are having after his sinus surgery. He wakes up happy every day - goes off to camp, and comes home tired and happy. He has friends, he has activities, and there are no tics or obvious OCD... but the night time is still iffy. He still has some trouble with sleeping or staying asleep... and I know we are only one germ away from another exacerbation. So... would IVIG decrease the number or severity of exacerbations? Would it raise the level of his baseline to something even more functional? Those are the questions I need the crystal ball for. We are so, so, very much in the same boat! It is absolutely not the money! In fact we have saved up for the IVIG for "just-in-case." For me it is about the fact that our ds10 is 95% better. It is so nice to hear him laugh again! How can I put him through this h..l all over again and for what reason? What am I hoping to get? But then if he can be 100%, I feel that I am being neglectful by not doing the IVIG. If IVIG's measurement of success is 75% of baseline, (I think I don't have that number exact) aren't we already there with the antibiotics? What if it turns back pages and we only get back to 85%? I will feel horrible that we didn't leave good enough alone and be grateful for the improvements that we did make. The thing that really holds me back is when I read that many are on their 3rd, 4th, or 6th IVIG. Then how is that considered working if it needs to be constant? So I go for the IVIG treatment in hopes of getting my child back when I already do have him mostly back? I know that he could relapse at any moment, but it sounds like that happens with IVIG also. It does seem that many of us are dealing with 10 year old boys and we are worried that we are reaching that "10 year" mark. That is why I was so interested in the comment about antibiotics on Dr. K's site. We had sudden overnight PANDAS and got on antibiotics after 3 months, but in all reality I can name 2 very small but odd times in the past after an illness and to be honest...after his 15month old shots....he was a bit in a fog ever since. Maybe he had asymptomatic strep during his shots and I didn't know. Oh, here is a question I have wanted to ask: We get his blood ASO and Anti dnase tested every 2 months. Although they are going down, it is very slow. Began in January with ASO 1726 and Anti Dnase 1920. Every 2 months they seem to go down by only 200. Now after 6 months his ASO is 1292 and Anti Dnase is 1360. At the rate they are going down, we could be doing this for years and that does not account for re-exposure! When you do IVIG, does that set everything back to normal limits? Anti ASO 200 and ANti dnase 170? I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic. -Ditto on the "entering 5th grade" child, but girl and absolutely needed IVIG -Ditto on the working with cherubs w/special needs to pay for my own to go to private school IVIG was 5/26-27, blood work from last week re:titers Pre-ivig ASO= 448 Post-ivig ASO= 227 Pre DNAseB= >1360 Post DNAseB= 340 That was the good news. Pre ivig myco p IGG = 1.63 Post ivig myco p IGG= 3.02 Pre ivig myco p IGM= 667 Post ivig myco p IGM= 764 Still trying to find out what this means, if anything.