P_Mom

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Just wondering, since we have several new members, if anyone else is from the Pittsburgh area????

Worried Dad........

Computer still totally freezing when I try to log in....only got 2 votes in today via FB application!

Yes, it is common with PANDAS patients because that is what PANDAS is.....swelling of the brain. It is good he didn't put PANDAS on file........better for IVIG down the road if you need it!

Worried Dad....how is your son doing? Still improving on HD Augmentin? Hope so! Kelly

yes, I totally agree IVIG help some kids TREMENDOUSLY....but, is it a cure? That is the thing I have trouble with! Yes, we know these kids have immune issues.......PANDAS is an autoimmune disorder.... Perhaps some need monthly IVIG to keep them stable? But, Dr. K states that one high dose IVIG is USUALLY a cure....really? Why haven't I heard of that yet after knowing dozens of kids on this forum who have gotten IVIG? Improvement (sometimes drastically, YES! cure, NO!) Yes, I know some are back to baseline after IVIG....but, they are still on antibiotics! I want to see a child get IVIG, go off antibiotics, and then get strep with NO symptoms! Now, THAT is a cure in my book! Kelly

Yes, Vickie has done that....even contacted Warriors Wish with no response. I think once you are out of this competition, by winning or whatever, you have had it. Past winners and voters are most likely exhausted and won't give the time. Couldn't vote so far today via Pepsi site.....kept freezing up totally, no matter how long I waited. I could only vote via FB application.

MrPGAPro...I sent you a personal message....check your messages. I believe, atleast I know my husband and I have several times (and continue to do so) that almost all of us have gotten down on our knees in tears and prayed.

Not to mention Dr. K did not follow-up on any of the kids in the stories past one year. Although I do know of one boy that was on there that is still doing well (but still on antibiotics, so, is he cured?)...and another girl on there who was doing well for 3 years then had a return of a bad PANDAS episode. It makes me angry, too. Only Dr. K says it is a cure,but, I haven't seen or heard of it yet. Dr. T and Dr. L say it is not, just temporary....I think Dr. B says that also. How long has Dr. K followed these kids. From what one Mom told me who has spoken with him at lenght....not very long. His site makes me want to run out and get IVIG.....but, my gut instinct is just not convinced. I do not want to put my kids through something unnecessarily...you know? But, if I KNEW it was a cure....they would both be hooked up tomorrow. I just don't know and I think Dr. K over-steps things by calling it a "cure." ARGH! Just venting.....so confusing!!!!!

This is my understanding... Sydenham's chorea results AFTER Rheumatic Fever......Rheumatic fever is not required for PANDAS to develop. Subsequently, SC, since it results from RF, MAY result in damage to heart valves......PANDAS does not result in heart damage.(nothing has been proven and the vast majority of PANDAS kids that have been checked have no heart involvement) They are considered two distinct conditions from the PANDAS docs I have spoken too....DR. K, Dr. L, and Dr. T. Perhaps you can pose this question to Dr. T on his YUKU board. He has an "Ask Dr. T" section. Also, the movements that develop in SC are different than the tics of PANDAS.....SC involuntary movements are more constant, writhing type movements of the body, arms, legs, etc....that is why it has been referred to as a dance called "St. Vitus Dance."

SFMom.. What level of Tricuspid regurgitation did Adrian have? Did the docs say it was realted to PANDAS? All of us here have tricuspid regurgitation and it is totally normal...benign....it is an extremely common finding. (again, as long as it is not significant) I am guessing it was not significant because you did not mention any follow up with him. I do know that aneurysms are related to Kawasaki disease....perhaps that is the reason for development....not PANDAS.??? As you mentioned.......RF only results in heart involvement some of the time...not all the time. Did the other children in the cluster get their hearts checked? One thing for sure....good news that the aneurysm resolved.....scary stuff! Kelly

I wonder what the time frame for follow-up was....and how many of these kids actually got follow-up echos for non-significant results? What was the level of decrease? How "significant" was the regurgitation in the first place? Echos vary from one to another (on same person).....color doppler is very sensitive and can pick up some regurgitation in one person one time, then not pick it up on the next echo, and vice-versa. It has to do with "over imaging." My first echo showed color doppler evidence of a hole in my heart (red blood where it should have been blue), then, a TEE and subsequent echo showed nothing...no color changes, no hole. You have to be very careful with Echo interpretation.

I second that wooooo-hoooo! (Jill, looks like you were right about the weekend! Smart girl!)

Hi! I just wanted to say that all three top PANDAS docs we have seen (Dr. K, Dr. L and Dr. T).....have seen no correlation between PANDAS and heart issues. They do not routinely suggest screening. I got both my kids screened just to ease my own mind. Neither of my boys (younger son Cam Kinase 162) have any strep/PANDAS related heart issues. This study referred to states that 28 of 48 showed "abnormalities." Namely, some reguritation. Regurgitation of heart valves (as long as it is not significant) is normal....it shows up on most normal heart echos. The study even indicated that non of the abnormalities were "hemodinamically significant"......this means they were of no concern or problem.....did not affect blood flow. Plus, 28 of 48 seems a normal finding to me. Both my boys, as well as myself and my husband, have some regurgitation of different heart valves, again nothing significant, and our hearts/echos are perfectly normal. The last child referred to with kinking , I am sure, had nothing to do with PANDAS. I don't believe there is much merit to heart conditions and PANDAS (my opinion)....however, you may want to get your kids screened to ease your mind. There will be some parents on here whose kids have some heart issues.........for every so many kids checked....you will come up with something. Does that mean it was caused by PANDAS? norcalmom....this issues has been addressed many times on this forum....and with the top PANDAS docs. Sydenham's chorea and PANDAS are two different disorders, however, on the same "spectrum." Sydenham's chorea results from RF, which, as we all know, can result in heart damage and needs to be monitored. None of the top PANDAS docs have indicated any correlation with PANDAS and heart conditions (and collectively, they have seen thousands)......however, Dr. T may suggest screening if your child has been diagnosed with Sydenham's, but not PANDAS.

I was also a bit concerned with the reply, but, in all fairness had to post it. I will e-mail Dr. Cunningham with our concerns/requests. Yes, FDA approval is what I was/am hoping for out of all this.

I've heard 3-5 days.

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Every time I go to check comments on the Pepsi page....my computer freezes and I have to shut it off and log on again. My Dad's computer also freezes on the comments.....all the comments are still there from last month.

Peg, AWESOME!! Yes, Dr. K says it should happen suddenly....it did for us, too! Hope this lasts!! (What dose IVIG did Allie get?) Kelly

Dr. Cunningham's (our nominee) response to how the Pepsi Refresh grant money could be used: "We would use the funds to continue to test patients and try to make sense of the data so that there will be less confusion about the disease that affects children with OCD and unwanted movements. Getting a test FDA approved is a possibility but this takes some time and is relatively involved. We also are trying to understand the mechanisms of signaling in the brain and correlate the antibodies with the different types of symptoms; so there are lots of experiments we could do with extra money, BUT, If you as parents wanted us to use all or some of the money for children who cannot afford the tests, this also seems a good use of the grant. Experts in Lyme disease also want us to test children with Lyme disease for these anti-neuronal antibodies and signaling in the brain."

Absolutely gut wrenching. I remember Dr Latimer speaking of her sons when we went to see her. A mother's love is truely undeniable.....we all know that. With all the heartache that we have endured with our PANDAS kids, it pails in comparison to the loss Dr. Latimer has suffered. Please pray for her and her family.......and go give your kids a big hug and kiss, and, be thankful for them, PANDAS and all. This was in her son's obituary.........I am speechless. "Interment will be at Arlington National Cemetery, Arlington, VA on Friday, June 25 at 11 a.m. In lieu of flowers, contributions can be made in his name to OU Pandas Foundation, P.O. Box 26901, Library - 162, Oklahoma City, OK 7312. Please view and sign the family guestbook at: www.pumphreyfuneralhome.com"

THANK YOU to all who dedicated so much of themselves to this project....just voting takes alot of thought, time, and committment! We did so VERY well our first month.....we learned much, which will give us an advantage in June. Just for everyone's info., I, Kelly, will be stepping down for June. Due to the sheer mental, physical, and emotional exhaustion this project took out of me (although well worth it), and, the time it took away from my family, I have opted (after much internal struggle) to hand this project over. My time availability has also dropped dramatically, and, will continue to be very limited through July...this is another reason for my decision...it would not be fair to this project. Vickie has decided to stick with this....God Bless her because it takes so much work to lead this project.....more than most realize. I will still hold an administrator position on the Pepsi FaceBook page, and will pop in here and there when I can to offer support, share experience, and give/get advice. (I, of course, will also be casting many votes!) Again, thank you all so VERY much for your support, and, for believing in this project. Like I said before......"IT AIN'T OVER YET!"

Great post JAG!! This month was HUGE regardless of outcome!