qannie47

I agree, this 4% even if it is that low is still 4% and that includes real people, real children whom are suffering. I can't tell you how many times I have fit into the 2% category....my point being, percentages should never figure into the equation when it comes to the decision of To test or not to test. EAMom, I agree whole heartedly with what you said. How many undiagnosed cases could there be out there? Another article hypothesized, about the many people sitting in psychiatric facilities that could have this disorder. As far as I am concerned, it could be .01%, if the symptoms have a possible fit, test.

How old is your ds? My ds, age 7, was too young to stress out about it. Plus, he has no fear of needles at all, so that probably played a huge role as well. I know that when my ds is stressed though, it definitely makes things worse. They will give him a benedrill, so that will calm him down during the treatment, which should help. Best of luck!!!

meant to post this link instead http://www.uphs.upenn.edu/news/News_Releases/2013/07/dalmau/

http://archneur.jamanetwork.com/article.aspx?articleid=1714848

My experience has been that when my ds is in any kind of a Pandas episode, he is very reactive to any stress...when he is not episodic, he is able to handle just about anything you could expect of a 7 year old.

We will see Dr, K on Monday. His ped doc is also going to run some inflammation tests....I don't know the difference between the two either....perhaps someone can clarify this for us. AE sounds scary....that is for sure.

I need to clarify, it was not Mayo that said they were not Panda's friendly, that came from a personal resource....we shall see.

I am sending our records to Mayo since Pandas diagnosis. I assume, since they are a collaborative diagnostic clinic, they will approach this form all perspectives....at least that is what I hoping for. They said they will review our records and get back to me. I have been told that they are not Pandas friendly, but I have shared with them that I am looking to rule out other disorders, I am not looking for a definitive Pandas diagnosis.

OK guys, My ds has been in a Horrible episode for about 2 weeks now. This was not to be since he had the IVIG. The abx is not working either....His pediatrician, agrees that Mayo might be a good idea. If you all had your druthers, where would you take him for a collaborative approach. I want ALL the tests runs, MRI, etc.....He is becoming non functioning even at school, something new.....UGH. Worried.

Ha!! This was you LLM? Never checked the author...Great work!!!

Today will be my ds's 9th acupuncture appointment. It has delivered some mixed results....and of course then are also many other dynamics that entered picture at the same time, it can get confusing...UGH Ds had 3 a week, plus adjustments to back and neck. MON_TUE_THUR. We are at the end of our third week. Cycle, DS was beautiful, no symptoms until we started this...but we also had introduced KEFIR at the same time, plus he came into contact with STREP at the same time..See what I mean??? But here is what I saw. Each week, after 2 consecutive treatments in a row, mon/tue...ds had two Horrible days on Wed/Thur. Friday showed a mid range improvement that carried thru until Tue eve and 2nd treatment. Weekends ranged from good to great. Spoke to Chiro about this, and he said that their could be a an inflammatory response going one here. This being said, we are very near the end of the 10 treatments suggested. Our mission was not to control symptoms, but to strengthen immune system in the big picture. So we will finish. Chiro and I brainstormed that 2 sessions in a row may have been the problem. One interesting positive result...My ds has been dry every night for the past week, and previous weeks since, we starting seeing intermittent dry nights pretty much instantly that we had not seen in months. The chiro said that this is the result of the adjustments. It will be interesting to see if he does not flair anymore after his 10th treatment. I will say, that if I find that correlation, I won't regret it because the long term result could be a stronger immune system. Plus a possible end to bedwetting??? I will keep you all posted.

http://www.easytolovebut.com/?p=2782 I thought this was a great article on MTHFT. For those of us whom are not very well versed.....and even for those of you who are, I think you will appreciate this.

If your going to try abx....get either amox/clave or straight augmentin. Amoxicillian by it's self did NOTHING for my ds with his first episode. He was on abx for 6 weeks before he tested neg for strep and finally ALL his symptoms went away....until he got sick again with any infection. I do not see any harm with a 14 day abx trial...trying this one time is not going to hurt anything, and just may yield some interesting results...that being said, if they do nothing, you can't rule out Pandas....like I said, it took 6 weeks the first time to see remission. During the next year, with mild episode, 14 days did restore my ds to baseline....then they stopped working...which led to IVIG. Best of LUCK

T. Anna, that acquaintance of mine who's daughter just received the HE diagnosis was not exhibiting typical symptoms either. She was actually dealing with an eating disorder and getting worse...mom pulled her out, because they were not listening about Panda's, and somehow convinced somebody to test for HE...

Good Luck Tomorrow!!! I thought that one article I cited recently pointed out that kids can wax/wane for years....maybe I am remembering wrong...I did think it had great info though.

Wonderful news!!!

I use products like Benedrill when my ds is over the top. It has a tranquilizing effect on him, and I use it sparingly.

This is a strange coincidence. An acquaintance of mine, who's ds had a Pandas diagnosis, just received the same diagnosis. I don't know what led them to that exactly. Does this change your overall diagnosis?

I researched briefly the 23&ME test. I am trying to figure out how this test can lend itself in helping our Pandas ds. Can anybody share what pertinent info it contains that has lead to successful treatment choices? When your data comes back, does it offer explanations to the findings?

Thanks guys. Got 3 second opinions. Kids doc, resource at Childrens, and psychiatrist. All said he does not fit criteria for Bi-polar, and feel he does not fit the criteria for any other psychiatric disorder...all three feel that Pandas is the right diagnosis. I must say, w/regards to Pandas, after experiencing so much disagreement about this horrible disorder, at least they all agree on something. Stopped Kefir probiotic smoothie yesterday, today, ds is better today . Not great, but considerably better. Wont get my hopes up until he is free and clear for a good week. Then I will just go back to my baseline worry for the next 15 years...until he gets married. When he says "I Do", I will then wipe my hands of the whole darn thing....his new wife can then change the bed sheets for him. Ha

Thanks everyone. Don't think it is the Florastor, since he was on it work several weeks with no problems. Stopped Kefir smoothie starting yesterday, and already ds looks better. But I am not going to get excited yet. My chiro is going to order the new probiotic anyway. I am becoming supersticious with all of this..Yeah, I misspelled super....but whatever, I am too tired to care. Dr K wants me to keep him on full dose of abx for 14 days...after that, he said, then it is time to worry.....UGH. Anyway, I knew I could count on all your great minds to answer my questions....

Out of pocket, about 7k. Two days out patient. No side effects at all except headache and we had a steroid on hand. He took one pill, and he was good to go. We were lucky that he tolerated it well. We did it on a Thu/Fri and he went back to school on Monday. 7 hours in total each day. In hindsight, I would not mention Pandas, it would have been covered if billed with autoimmune diagnosis. I am going to appeal this, in case we need another one. The whole thing went very smoothly. Dr. K never left his side, pretty much thru the whole thing. Very vigillent.

just checked Kefer Probiotic smoothie...ds has been drinking tons of it in the past week....filled with tons of bacteria, but don't know if it is strep

OMG....just realized that my ds's Pandas flare stared 2 days after switching to new probiotic, NOT THE ABOVE newly recommend one listed above. The current one is Florastor...anybody know if it contains Strep????

Thank you all for the wonderful, and thoughtful insight. I have removed current new supplement of Cyandine from his diet as of today. Got 3 second opinions from doc at Childrens, family pediatrician, and client whom is a psychiatrist. All agree that Bi-Polar does not fit...nor does anything else but Pandas. At least feel good that perhaps we truly are on the right track. Yesterday, my little peanut was telling his classmates that he "hates them and that he is going to kill them". Of course, they removed him from the classroom. They are really kind and trying their best to help us. The principal himself is taking him outside for a break when things look to tuff for him. So some good stuff... Today, he woke up better, and his teacher reported 50% better. Tonight, he was back to saying, "oopsies" when he made any kind of mistake....I just hugged him. I am going to take all of your heartfelt advice and sort it out. Thanks again...