tpotter

Honestly, if you don't need it for dx, I wouldn't bother. She has plenty of kids with samples. Most of us do it, because we need the dx. I even did it twice on my older son, because even after one round of PEX, which went well, 6 months later, Dr. L. thought he might have something else. I chose to contact Dr. C. again, and repeat the test...it was positive. I also had my younger son's blood drawn, and am freezing it. I would have sent it in at that time, but he was supposed to have a second round of PEX at that time (problems at Gtown kept him from getting it at that time. I'll send it in later, but that's for her records, since I want to help her with followup information (and it helps us to know.)

I agree with PhillyPA and Philamom about CHOP. Don't waste your time with them. But, I will give you hope, if you want to try (although it will probably take 3 months to get the appointment:) Dr. Legido is a Ped. Neurologist at St. Chris. He knows a pretty fair amount about PANDAS, as he showed me a textbook section he wrote about PANDAS (pretty general.) He does know about, at least some of the research out there, as I mentioned the Turkish study on PEX to him (I brought that article, as well as Dr. Cunningham's articles, and several others to the appointment. I was trying to get PEX for my boys.) He took forever to get back to me, and by that time (1 1/2 months later) my other son finally had HIS appointment. I called a few days before to see if there was any chance he was going to be able to treat them or I wouldn't waste my time coming back. He finally got back to me, and we went. He is willing to do IVIG, and said he would do it according to Dr. K's protocol. I was going to get it for my son, but it was taking awhile, and we got an appointment with Dr. L, who we have used in the past, for only 3 more weeks from then. I really prefer PEX for my boys, only because I keep hearing about how long it takes for the IVIG to work, and it didn't work well with my younger son (PEX worked better.) Plus, my younger son was denied IVIG from insurance through Dr. K. That being said, IVIG does work extremely well for many kids, and Dr. Legido will do it. For the record, when I called Dr. Legido's secretary to tell her to cancel whatever she was working on, I did tell her that I was very appreciative that he was willing to do it, and then I explained why I was going the other route. I also asked her to pass on that if he changes his mind about PEX, to please let me know (I haven't heard anything.) But, again, don't waste another second at CHOP...it's not worth it. Either get an appointment with one of the PANDAS specialists (Dr. L, Dr. K., Dr. and/or get an appointment with Dr. Legido. Here's another thought. Get an appointment with one of the others, and simultaneously get an appointment with Dr. Legido, since it takes so long, anyway. In fact, I would highly recommend that you consider getting Dr. B. to do all his tests for immunology, because if you want to go the IVIG route, you'll probably have an easier time getting insurance to pay for it, if you have an immunological dx (I'm doing that, so I can make sure to cover all bases. Dr. B's office was surprised when I told them that I didn't want the IVIG tx, but just wanted testing, and a dx.) Good luck, and take a huge, deep breath.

One was breastfed until 1 1/2 years old, the younger one was breastfed for 4 months (I needed surgery, and couldn't breastfeed, because of medication), then bottle fed.

Wonderful post. Thank you for saying everything you have said. It is so inspiring.

I am SOOO excited. Have a great visit (I used to live about 10 blocks from there!) This will feel so good to throw in my immunologist's face. She just told me yesterday that PANDAS is questionable. I asked her if she had ever read the articles I gave her from Dr. Cunningham. She wouldn't respond.

Melanie, In our experience, we have found that both IVIG and PEX helped our ds 14 with anxiety. That being said, it really depends if there is any background to the anxiety. What I mean by that is that he still has social anxiety, and this directly affects his ability to go back to public school (for which we are fighting the school district tooth and nail, because they significantly contributed to the problem.) He was bullied really badly before we moved to Philly...for 3 years. The year before we moved here, though, he finally got help, via a 504 plan, and it was wonderful. When we moved to Philly, the school district refused to honor the 504 plan, he was bullied severely again, and he talked about wanting to be dead (nothing was done by the school district, because they told us it "wasn't a red flag.") He crashed at that point (PANDAS got significantly worse, and he ended up hospitalized with scarlet fever, SC, etc, had a total of 3 school refusals, and after the hospitalization started having school phobia...never went back. IVIG and PEX took the edge off the whole anxiety piece (because he certainly had anxiety, as well caused by PANDAS.) But, it did not 100% get rid of his anxiety, because he is still afraid to return to the public schools, and has announced that if they try to make him, he will just refuse to go back to school at all...that'll certainly create an interesting problem for the school district I hope this answers your question.

2 things: 1) I agree that he probably needs a low dose abx to stay on (if it's actually diagnosed as PANDAS, some docs (like Dr. L.) are leaving them on abx into early adulthood (like Rheum. Fever.) You might also, what to get a consult at this time from a PANDAS specialist, only because you might need one in the future, and it doesn't hurt to have a 2nd dr. who will tx, and/or guide your local doctor. 2) Thanks Peglem for the suggestion about teaching maturing. I will very much look this up for my sons, who are seriously struggling with this problem (one more than the other.) I am so glad that you got the help for your son, and it worked out so well.

first, I want to give you huge kudos for being so incredibly understanding. My boys have rage attacks, and they are horribly scary, but we never had to follow through on calling the police. Please check, like everyone else has suggested on mycoplasma pneumonia and lyme. Also, the abx that many children are using are Augmentin XR 1000 mg BID and zithromycin 500 mg. That being said, maybe your dr. would be willing to speak with Dr. Latimer, Dr. Bouboulis and/or Dr. K for more direction (just remember they all have slightly different directions they take with everything, but they all really, really know what they are doing. Additionally, is it possible that some or all of the psych meds may be causing increased aggression? Read the attached article. I know this is what happened in older son with risperadol and concerta/adderal, and he no longer takes any psych meds. On the other hand, my younger son takes Lamictal (for seizures,) and it does calm him down overall, but when he goes into a PANDAS rage, it does nothing for it. http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561 Good luck. I really hope you get to the bottom of this...for his sake as well as yours.

FYI: Florastor has lactose in it for those of you who are either lactose intolerant or dairy free. Florastor is a namebrand for sacchromyces boullardi. I get that through Vitamin Shoppe.

I don't know how to attach an article, or I would. But, check out this link by Dr. Tanya Murphy: http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561 It's in Primary Psychiatry, and notes that in the PANDAS subtype, SSRI's can make behavior problems worse. This would totally explain my son's reactions to any and all anti-psych meds. This might also explain the situation you guys are having.

Dr. L. keeps the kids on abx until at least early adulthood.

My son had IVIG last year about 2 months prior to PEX. Both definitely helped with anxiety.

I wish I knew what to suggest. We are seeing Dr. B. also to get immune testing. I think with that, if we need IVIG in the future, it might help. Also, I surely hope that the White Paper that is supposed to be coming out will also make a big difference. Do you have any immune testing done? Or can you go with an Encephalitis dx?

After having been denied by BCBS 3 times, another parent on the forum recommended to us to not use the NOS codes, because many insurance companies consider that a red flag. I would go on the internet and find CPT codes, and see if you can get a dx code for Encephalitis or Immune Disease. Then ask Dr. K if he can use one of those codes. Also, be very, very careful about using the term PANDAS. I think that's what got us (it was mentioned in doctor's notes.) We still don't have approval, but are going back to see Dr. L. in 2 1/2 weeks, and will just try to get PEX again for now. Good luck.

Let me ask you...are you afraid that Dr. J. will not want to treat him anymore? I think maybe it would be better to tell her that you have decided you want to give it a trial. You respect her opinion, but you also want to see if there's "something" to what the other docs are saying. Then tell her that you'll keep her informed. Maybe this is the opportunity to help educate her.

When our son was at his worst, our vet specifically asked if the dog could possibly be making him worse (he knew more about PANDAS and autoimmune disorders than most of the doctors we've seen over the years. I called Dr. L, and she called the vet, and said to give him a big shot of a specific abx, because we had just adopted the dog through the SPCA (he had been in a puppy mill, and had a chronic cough.) More recently (as in about 1 month ago), he spent 2 days at the kennel (that we always use), and came home with a terrible bladder infection, and a very slight cough (yes he had his bordetella vaccine...a killed variety.) He was put on abx, and then it just didn't seem to completely go away. We brought him back to the vet, who understood, and was put on a bunch of meds + had a shot of penicillin. Although my kids are still having problems (mostly because they are way past needing IVIG or PEX tx, and we are fighting insurance), I don't get the same feeling that it is coming from the dog (trust a mother's intuition.) So, whether or not it is possible to get strep A, doesn't really matter, because once the kids get PANDAS, anything can trigger it, including things that the dog brings home (my son even got sick from the dog's first "live" bordetella, and that's why our vet told us about the "killed" variety.

Thank you. I'll give it a try.

A lot of kids with PANDAS have chorea (it can be one of the symptoms.) My son also has it.

Wow. Another reason that the NIH absolutely, positively MUST change their website. Pray for me, anyway. This is really a very sick system. What insurance company do you use? I suspect it is hit or miss in all these cases.

Oh, I also called Dr. B's office, and she said to call back on Monday when someone else was there. I told her our problem, and she said this other woman in the office could give us an idea if it might be an option. She's also going to see if there's an earlier appointment. At this point, I want to cover all bases, and even if all the 3rd appeal is denied, it can always be resubmitted. This is just totally crazy.

Thanks everyone. Actually, Dr. K. does use Encephalopathy, NOS, but there was a mention in a previous note by another dr. of PANDAS, and they are trying to claim that it is experimental. I am planning to fight this based on the fact that he has way more symptoms than just OCD and tics, and that it really doesn't matter what the cause, but he does have inflammation in the brain, and that's really the bottom line (I'm going to list about 25 symptoms, which can't be treated by SSRI's.) Also, I'm going to point out that it's not uncommon to have co-diagnoses, and he has inflammation in the brain causing all of these symptoms. Then, I'm going to include articles that show that inflammation in the brain is successfully treated with IVIG. What do you guys think?

Got that one for PEX alone. Certainly a good one. Any more for IVIG? Thanks guys.

One of the children I work with probably has trich (I'm really pretty certain, but not being a dr, I can't make the dx.) But, I did recommend that the mom take her daughter to a neurologist. They have an appt. I'll let you know what he says.

I feel like I just can't take much more of this. He was supposed to have PEX 5 months ago...it didn't happen. Then he was supposed to have IVIG 2 weeks ago. Insurance keeps denying. Dr. K. joined me on the 2nd appeal, but they still denied. Please...whoever has research they know of that correlates IVIG and PEX with PANDAS tx (besides the Lancet), I desperately need it by Monday. I have asked Dr. K. and Dr. L, as well. I just can't believe this keeps happening. My DS is so sick.

I'm in...Any night except Monday night (that's bowling night!)