beeskneesmommy

Yes. they do not have to be infected to have a PANDAS/PANS response. They just have to be exposed if they are very sensitive. My son hardly ever gets sick and is on Augmentin and Azith, daily. He does not react as much now that he has had 1 IVig. However, it used to be that I could tell when another kid was about to get sick if DS reacted after playing with him/her. Sure enough, the parent would tell me the next day that the kiddo was sick. Not much you can do except vitamins, eat right and beef up that immune system. Has your kiddo had IVig?

Myco is a critter that jumps in with walking pneumonia. It can also be transmitted by ticks. Azithromycin is the first line of treatment. Dr. Bouboulis can treat this. My son had it and we successfully knocked it out. It has not returned.

DO NOT TAKE NO FOR AN ANSWER!!!! Our ENT refused as well. Our son, 4 at the time was Strep infected and the T&A caused a severe, acute episode. IOt took the better part of a year on daily abx to get him back (partially). Can you have Dr. T or another PANDAS specialist do a consult? DON'T agree to this surgery without a run of sterilizing abx!

We had IVig with Dr. Latimer in Sept. 2012. She ordered thru a pharmacy that traveled to her office to administer over a period of 2 days. We were sick of our insurance jerking us around and paid OOP. It was a bargain, as far as we were concerned. All said and done for our 43.5 lb son including Dr. latimer's fee for oversight was less than 5K. Also be advised that if your insurance denies the actual cost of the IVig, you can still usually recover reimbursement at least in part for the Dr.'s fee. We would have done it for twice the price and we have absolutely no regrets except that we didn't do it a year sooner!

We do not avoide cheeses, but my son only eats string cheese and cheddar. I see that there is some StrepT in cheddar but we have not had any related concerns. I do make sure that yoghurt does not have it tho, and particularly, probiotics, which can have it.

I didn't think I had to put him on it. I chose to just because he has been on heavy abx for a long time - figured he had to have some yeast overgrowth, as the probiotics are spotty at times. It was basically as a precaution. He is classic Strep:PANDAS and presents mildly after a couple of years of abx and 1 IVig. I have given him only 2 runs of Diflucan, first 12/2/12 and 2nd is in process right now. I just noticed that he seems to do really well on it, although he is very functional off of it (in betw. flares). I am in process of making some dietary changes as well. He is the pickiest eater ever!! Thx!

Hi - each time I put my son on Diflucan he become STELLAR. Tisnis the 2nd time - a 35 day run of it, basically for the heck of it to make sure there is no overgrowth as he has been on abx for a very long time. He does take probiotics, but we figured, why not make sure to eradicate overgrowth just in case as Diflucan is relatively benign for side effects with an otherwise healthy kid. He is mild in presentation most of the time except in flare, but the difference from mild and functioning to Diflucan functioning is very noticeable to me. Any thoughts on what we are dealing with and how to better prolong the effect when he is off the Diflucan? Keep in mind that he is 6 and will not take pills and will not easily have a "mickey" slipped to him...thx!

Are you seeing an allergist/immunologist who is a PANDAS specialist, like Dr. Bouboulis? I can honestly say my son had a simus infection from birth - always had irritation in the sinuses, miserable! He cleared well over a year ago, but not d/t all of the abx. It was the abx in addition to Nasonex daily that did it for him. Also, have you tried steroids? They often help to flush out all of the junk in the sinuses...these things worked for us - it never occurred to me that it might be fungal - I just assumed it was a resistant infection, but they may me worth a try before moving onto fungus concerns...

Well, 1st of all, take a deep breath. It's great that you have a diagnosis. Now, it is important that you see a PANDAS specialist ASAP. Waiting lists are long, so get going right away. Below is a link for a list of providors. You will also find this Site (PANDAS NETWORK) helpful for other information and case studies. I have heard good things about Dr. Rao, in Plano, TX. Know that you are not alone. This site and several other FB Sites are very helpful. Take care and best to you! -Kath

Strep can be pretty sneaky. Group B likes to hang out perianal, and some docs might say that kids don't have PANDAS response to this type, but many belive that they do and I know moms who have kids with this and they have flares or theitr PANDAS kiddos hav flares to the group B kids. Strep also hides in the gut. If your kiddo still has tonsils and adenoids, Strep can be hidden in the crevices and the abx can miss it. This is what happened to us. Also, are you testing for Mycoplasma and other co-infections? Not all PANDAS/PANS responses are to Strep...

DS4 at the time was on Augmentin alone at first. helped, but when we switched to Cefdinir 4 months later, it was really great. Unfortunately, he went downhill again after about 4 months of Cefdinir. the Azith/Augmentin combo that has not worked for you did work for us several motnhs later. I think it just depends upon the child and what infection that you are fighting. We had some other stuff on board that the Azith eventually took care of, but hopefully the Cefdinir will do it in the long run for you! Again, we did see impressive improvement with Cefdinir for a while...happy for you that things are so good!

Dr. Josephine Elia will be starting practice at Dupont Children's Hosp. (Nemours) in DE on Mon., 2/11. She will see her established patients 1st (from Chop) and there is a wait list already for new PANDAS patients. If you want to see her, I suggest that you make an appt. right away, as the wait list is 2-3 months. Link below, ask for Behavioral Health. http://www.nemours.org/locations/delaware/naidhc.html

If your kiddo has recurring tonsilitis or Strep throat, absolutely, yes! make sure that a specialist is following the situation and get a sterilizing run of abx prior to the surgery. reg. prophylaxis is not enough. I know, from learning the hard way.

Dr. B has made several comments to me re: sinus infections. I would call/email the nursing staff right away!

PANDAS Network has also been helpful in our journey. Again, I state that a multidisciplinary approach may be beneficial, as not one entity or specialist has all of the answers for each individual child. I also seek resources and information from several different sources in order to gain as much knowledge as possible. This includes the organization discussed.

What?? Sinus infection is a known harbour for Strep and other PANDAS/PITAND bugs! How weird and disturbing! Both Dr. B and Dr. L have told me that this is a must for clearance in order to make headway!

Yikes! I have answered several PMs. There is nothing wrong with Dr. B! What I can tell is that we have been at this for quite some time. I do a lot of research and work with a multidisciplinary team. We chose to have our son's 1 and only IVig with another specialist due to our conservative approach, financial constraints, our location, and the fact that our son presents very well when not in flare. No co-morbidity. However, Dr. B was able to bring our son very, very far with abx alone, long term. He did not by any means push IVig, in fact, he was ultra conservative regarding this treatment. We continue to work closely with him and he manages much of our son's meds and immuno issues. I credit him, in part, with saving my son. In addition, we work with a multidisciplinary team for just that reason. Dr. B, as an immunologist, brings that piece to the table. Dr. L, as a pediatric neurologist, brings her piece, and our other docs bring theirs. I don't think that 1 doc out of the big guns is necessarily better than the other, rather, it takes more than 1 discipline to treat each individual child. I credit this, most of all, with our success. The main things is to consider more than 1 opinion and make an educated choice that is right for your individual child. I repeat - Dr. B is a good man, a good doc, and I trust him! Ultimately, the responsibility and decisions for treatment lie upon our shoulders as parents.

I will PM you.

Jeeze, Smarty - I am right down the road, where I grew up at my parents house in Wayne, off of Old Eagle School Rd. Wish i knew about this and I would have planned accordingly. As it is, I will be heading back to NC tomorrow morning, early. Good luck and I hope that it is a fruitful conference!

We did our only one in Sept. w/ our 6 year old son. We are not at all sorry. He is still flaring when exposed, but to a more manageable degree and in between flares things are pretty good. We want to do another in the spring when school lets out. BTW, we will be at Dr. Latimer's tomorrow (Wed. 1/30) for an 11:30 appt. If you want to chat, my name is Kathy

I have seen this gentleman interviewed before on TV. He is a lovely, wonderful inspiration! Thx for posting this - just at the right time when I was feeling low. Godspeed, my friends!

My son has gotten Strep right thru Augmentin, Azith, Keflex when he still had his tonsils. I know of several kids who get Strep right thru the abx, even after T&A. She could just have a virus, but what could it hurt to get her swabbed? Just ask ahead of time to have her go right into an exam room when you get there instead of hanging out in the icky, buggy waiting room...

Thx!

I have heard lots of good things as well - I would love to try it but I am sure at this point it would be wasted as my son would never drink it; even if I lied and disguised it! Would love to hear updates on this issue if you give it a try!

I do not think tbhat PANDAS does have a recognized genetic component. There may be, but the research is not in. We know that there is a Correlation betw. many PANDAS kiddos and the MTHFR mutation, and that there is often a family HX of Strep, RF, SF, but I gthink the jury is still out on cause and effect (likely will be for a long time).