saidie10

If you type in her name and find her on the University of Oklahoma website you can see a somewhat brief description of the study. If you submit the test there is a more detailed description of the study in the test kit.

No question is dumb! I believe and I hope someone will confirm or correct me that she ran the strep tests (ASO and AntiDNase B...not sure if she did a throat culture?) that confirmed that Sammy had elevated titers and in fact had had a strep infection that had gone untreated as his Mom, nor Sammy knew he had strep as he was asymptomatic. This test unfortunately is not a definitive test to confirm PANDAS, but coupled with Sammy's other clinical symptoms and characteristics and the elevated titers, Dr. N confirmed that Sammy's neurological issues were indeed brought on by strep. Hope this helps and that I am correct? WOW...somehow missed all the other responses to this thread before I typed mine!

THIS week my son was bitten by a LOT of chiggers in a VERY private place if you know what I mean and he scratched so he had these huge welts all over his groin....trying to get medicine on them was a nightmare....makes me wonder if it caused an upswing in behaviors....hope yours ends soon! Brandy uuuggghhh... mine are still up tonight after an increase dose of melatonin. been trying to get them to wind down since 8pm!!!!!

Hi Brandy. I would definitely call that regressive behavior. Anything that is not normal for them to do, especially not normal for someone to be doing at their age would probably be considered the regressive behavior they talk about in PANDAS. If someone else can add that would be good too!

IT was not horrible but it was NOT normal- the meltdown was short the defiance- moderate but I think it had more to do with me managing my expectations of how the say was going to be.....For my rough and tumble boy to talk like a baby all day is sweet- but just not right! Brandy OMG Brandy, my 5 year old talked like a baby ALL day in choppy short little baby sentences. I couldn't say it better...cute for about two seconds, then you want your normal 5 year old back!

might need a straight jacket by the end of the day between the two of em, i got some slightly demonic children over here! just sayin

Glad you stuck to it and kept searching for answers! I too believe Mommy instincts are the most correct every time!

I have never yet you, yet I sit hear shedding a tear for you. This is truly shameful what you guys are going through. I hope you can find the strength to continue fighting and remember, those children are SO BLESSED to have you. Sending prayers your way...

Hi! Travel to Dallas was WELL WORTH it. We had heard that we should be prepared to wait a long time at the office for the Dr. but we fortunately had the first after lunch appt and went right back. He spent 3 hours with us! AMAZING. First doctor in 2 years to REALLY listen, REALLY ask questions, REALLY seem to believe and care about the treatment of our boys. I am so thankful for the referral from two special people on this board! I feel like we are FINALLY headed in the right direction to get some answers. His actually said and I have been waiting to hear this from a doctor, and other than just an email from Dr. K, "your oldest son has CLASSIC PANDAS presentation". A diagnosis, no, but affirmation that what I have believed for so long is very likely true. Still kind of early to tell on the younger son, but we will watch him closely and do all the same bloodwork we are doing for the oldest. Cunningham test went out via FED EX yesterday from their office and we are going for blood draws today for the other test. Results of bloodwork will help determine course of action! Just got an email from Kathy Alvarez and she already has the tests in hand, delivered by FED EX this morning! YEAH! She said in her email that based on the synopsis I sent that my oldest DS could be the poster child for PANDAS. More affirmation and tears in my eyes (happy and sad of course ) I finally feel like we are getting somewhere!

Now the wait...hopefully he is feeling better poor thing!

this is a great thread. VERY helpful! good luck to everyone trying to find coverage. we have United and they cover IVIG for PANDAS on one of our boys and BCBS on the other...wait and see what will happen with his if needed!

Sending prayers your way for a speedy recovery. Poor thing! Very tramatic on a child but it will be worth it....keep thinking this!

Gosh this is so sad and scary. It is good you caught it early and are in very good hands as I understand with Dr. B. Keep us posted!

Hello All! Tomorrow is finally the appointment we have been waiting for. We are meeting with Dr. R, an Immunologist who will treat PANDAS in Dallas tomorrow. I got the referral from someone on this board and I have also seen his name on the list somewhere on this board. We are really looking forward to it. I was hoping you guys might lend me some last minute advice on questions I should definitely ask, bloodwork that should definitely be done, and well just anything you guys have learned along the way that might help! I want to make sure I make the most of our time with him since we are traveling to see him. I already have a pretty good list of bloodwork options but don't want to miss anything! Thanks so much guys! This board has been such a huge source of help to me!

My first recommendation is to get the appropriate blood work done in an attempt to rule out PANDAS/Chorea. The conditions of the three movement/behavior disorders you listed are very similar so it is hard to sort it all out. I wish I had answers for you about the possible connection with ASD. Sorry to hear you are dealing with two boys with troubling symptoms. It is so hard. We are dealing with two boys too whom we believe have PANDAS. We are just in the beginning stages of trying to find help although our oldest has had tics and OCB for almost two years now. We were certain we were possibly looking at a future TS diagnosis but now we are confident it is PANDAS and we are seeing the same thing in our younger son now. Good luck and stick around on the board, you will find a lot of support and information.

Great news! Interested to see how they treat this!

Full episodes are supposedly available on iTunes, search Mystery Diagnosis. I didn't see full episodes on the website for the channel though, just clips.

Thanks for adding your story. Sounds like your children and your family have been through a lot. I hope there continues to be improvement. Keep fighting!

I guess time constraints would limit everything they could say on it. I agree on the rare disorder thing. I think when all is said and done, THIS is going to be a lot more common than anybody thinks.

Figured someone would post something like this when I jumped on after watching it but since there was not one I thought I would put it out there. I thought it was very well done and informative! I called and emailed all my family members and had them watch it and I think it was worth it. I hope they understand it a little better now!

I will tivo it and wait until I watch it first. My boys are young and although I KNOW we are going to get a PANDAS diagnosis soon, I don't want to freak them out. I had tried a while back to have my oldest watch Front of the Class with me (the story about the teacher with Tourrettes) after the Neurologist told me that was probably where were headed and I wanted him to know that tics were ok and other people had them and not long into watching it he FREAKED! So it was not a good idea after all. Again they are only 7 and 5. I think older kids who can grasp their situation better would benefit from it, especially giving them the hope that there may be a light at the end of their dark tunnel.

Ok so this Strep Pneumoniae is one of two of the typical isolates found in ear infections? Like my boys have both had a gazillion ear infections! Should our kids all be tested for this type of strep too?

This is a great article! Thanks for sharing and helping to get the word out there!!

I would guess it is a type of compulsive behavior. The need to copy comes over him and he has to do it. Or, he could just be acting silly! It is so hard to tell sometimes!!!!!!

I wish you the best! Sounds like you have a firm grasp on it. A true test you are right! Hopefully things stay under control! Good luck.