tpotter

We have had it several times...it can begin for any reason, (bug bite, etc) then quickly spreads through the body and is detectable by redness, pain, swelling, a fever, and gets worse quickly. Can lead to scarlet fever. Goes away just as fast with abx, sometimes a shot of penicillin is required. To avoid contamination of other family members, change all towels, sheets, and wash clothes every time they are worn. Be vigilant for the next month about this. Our whole family was infected and had to use muprocin in our noses and wash with anti bacterial soap for an entire year. Watch for pimple-like or cyst-like signs, those are the early signs. We are dealing with that right now with both my boys. Reminds me, I need to go clean their bathtub!

It was Dr. B. who said that, and was quoted in a newspaper article. I don't know about the specific requirements for the IVIG study, but I would suggest that she go to the NIMH website, and pull it up, and call them immediately. The sooner she starts the better. Good luck.

Autism develops early on....if u develop autistic like symptoms later you don't have autism.... Autism doesn't necessarily develop early on. Autism is really just a set of symptoms: language, sensory and social skill deficits, and a person can have any amount of any of those combined (there needs to be all 3 to make the dx.) That being said, some kids appear to be "born" with it, and some kids don't get it until "later". (The kids who are born with it, probably just have responded in-utero to something that got passed down.) It has been commonly accepted that some kids regress at about 18 months, and then it's called Autism, as well, but honestly, I've never heard of a child developing it at 5 years old. And now that I've been part of this whole thing (with one of my children diagnosed with Asperger's Syndrome to turned out to have PANDAS, ANNNND...social skills jumped 6 - 7 years overnight with IVIG treatment....I seriously have to question the whole issue of Autism. Personally, I think it is an immune disorder that causes inflammation in the brain, and that there can be all kinds of causes...including infection.

I don't know all the details of what they are looking for...just that they have some very stringent requirements. I would contact them, and ask. Worst case, you don't get accepted. Best case...you do.

thanks norcal mom for the great info!! i checked out some of the slides from the link on pandasnetwork.org. do you know if there is any slide or any direct quote from Swedo about '10 good pandas docs"? So the slide is an basicall used to state that we are all in the chasm as far as pandas? thanks! I don't remember her specifically saying: "10 good docs", but I do know she said that there were only maybe 10 docs who are treating PANDAS (my understanding was that she was talking about everyone we know.)

Dr. Swedo mentioned at the conference in Texas, that the study was still open, and only has about 8 - 10 kids currently enrolled (I think they are shooting for 50!) They are being very picky, and I know the child has to have very recently become sick. If you are interested in getting more information about it, I just copied this from the NIMH website: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) Research Study for Children If your child suddenly developed obsessive or repetitive thoughts and behavior after a strep (streptococcal) infection, he or she may have PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection). We are currently accepting children (aged 4 to 12 years old) with PANDAS into a study investigating whether intravenous immunoglobulin (IVIG) improves the symptoms of PANDAS. Intravenous immunoglobulin is FDA-approved for primary immunodeficiency states and idiopathic thrombocytopenic purpura. Its use in this study is experimental. During the first 5-day inpatient stay, some children will receive IVIG, and some children will receive a placebo (intravenous salt water with no active ingredient). After 6 weeks, children with severe persistent symptoms may receive IVIG during a second 5-day inpatient stay. Two additional one- or two-day evaluations 3 and 6 months after the first study visit are required. There is no cost to participate in this study, and travel and lodging assistance will be provided. Parental consent is required. Children will also continue to be followed by their own physician while in this study. To find out if your child qualifies or for more information, please call Rachel Kushner at Yale (203-737-5588) or Lorraine Lougee at NIH (301-435-6652) (TTY# 1-866-411-1010) or email us at Rachel.Kuschner@yale.edu or lougeel@mail.nih.gov. __________________________________ The sooner the study is completed, the sooner we can all possibly get insurance to pay for IVIG for our kids.

At the conference, she made it clear that not only was cam k significant, but so was D1 and D2 (one of the Dopamine's being high would indicate that the child would have more psychiatric problems, and the other would be more neuro.) I asked her what it means if both my DS's numbers were high (both Dopamine 1 and 2), and then I kind of finished it myself...both neuro and psych problems are bad for him) I would suggest emailing Dr. C. about answers to your questions. I don't want to assume that I know for sure that it is 100% diagnostic of PANDAS/Lyme/SC or just that it definitely shows something. I know that it is significant enough for her to start the process of trying to offer it commercially. She may not answer you directly, as I know she is working on (or maybe waiting for) publication of the findings. I know that publication, once submitted and accepted in these major journals, can sometimes take a year to get in. And, the other question...no it is not commercially available, yet. Dr. C. just finished a 1000 child trial with the test.

That was actually the first symptom my DS had when this all started. Pediatrician told us to take him to ER, and wanted him tested for seizures, but the ER refused to speak to pediatrician, and too much time passed. It was the middle of the night, and after waiting approximately 3 hours without them doing anything, I walked out. It is a symptom of PANDAS, but that being said, there are kids (including mine) who do have abnormal brain waves that appear to be seizure related.) Mine is controlled with anticonvulscents. Because of this symptom, if you are not already seeing Dr. L, I would go see her. Don't mess with other nurologists. Dr. L. will probably test him for seizures just like they would, but she also understands that there can be a correlation (DS has shown abnormal brain waves throughout 8 separate eeg's in the fronto-temporal lobe, which they said appeared to be seizures, but the behavior was not associated with it (so it wasn't called epilepsy.) You need to see a good PANDAS neurologist who "gets" the correlation, and won't blow you off, and tell you that it's psychological. Good luck.

1st...I would gather all the literature you can (actually print them out)...including, if you can get it, the information from the symposium on post-infectious syndromes in Texas last week. I am completely fed up with these doctors who somehow have their own hidden agendas, and think they know everything when, in reality they know less than nothing. Hand her the stack (it will be huge) Give her a list of doctors to call: Swedo from the NIMH, Cunningham, Lecker, Lipkin, Noel Rose from John's Hopkins, (get all the names from the conference brochure last week.) Finally, I would tell her she is ignorant, and breaking her code of "first do no harm!" Then drop her (I took my DS to a neurologist earlier in the year. His fellow came in first,and when DS told her he had PANDAS...he's 18, so I was letting him speak for himself...she started giving me the same thing. I don't take that ***XX*** anymore, and cut her off. At the end of the appointment...he was there, because of tremors...she asked if I would like her opinion on PANDAS, and I told her "no." She tried anyway, and I told her: "I didn't ask you,and your very ignorant on a subject you know nothing about. Now, if you'd like, I'd be happy to send you all the literature and proof that exists from some of the top doctors and research facilities in the country," and we walked out. Made me feel great! OK...now that I can get off my soapbox. There are doctors in the northeast, but you are going to have to travel. There's a list at the beginning of this thread, and if you PM me, I can give you names. But, there really are only a handful of docs who treat this. Personally, everytime something new comes up, I keep forwarding all the new documentation to all the docs in my past who either adamently denied it existed or who really just knew nothing about it. You might want to start doing that with the docs you've seen.s

Anyone else have on-going burning sensation with BEG spray? We are doing a CT scan of the sinuses hopefully in the next day or 2...as soon as precert is done. But, in the meantime, DS is using BEG spray, and stopped for several days, because it burned so badly. I have convinced him to continue, because he can't use oral abx now as a result of c-diff, and he certainly needs something. I highly suspect there is a lot of mold, because the building he is in a his university smells and feels moldy, he said (I reported it, but....)

Melanie, I was just thinking of you. We also had it done at Gtown...just like DCMom. I also agree that I wish I could get it done again. We have done 7 IVIG's on one child and 6 on another, and on my younger son...I really feel he needs the PEX again. Held him longer. I agree that I would do PEX followed by IVIG.

Also, have you checked to make sure no one else in your family is ill (like your DH, you or any other children?) Any exposure might trigger them. I'll keep my fingers crossed about the azith. I think it's a great idea.

I was waiting to make sure it was ok for me to write this, especially the way I write it. Norcalmom and I both mentioned that Dr. Cunningham had mentioned that they are now trying to start a new lab to provide the Cam Kinase test. It is called Moleculara Labs (Dr. C. just clarified it to me, because I wanted to make sure the information was accurate...I had written it down wrong.) She said that they are wanting to make the test commercially available through this lab when it is financially possible, and following all governmental regulations. If you want more information about the blood test, I would suggest that you email Dr. Cunningham. In my opinion, this is big news!

I was waiting to make sure it was ok for me to write this, especially the way I write it. Norcalmom and I both mentioned that Dr. Cunningham had mentioned that they are now trying to start a new lab to provide the Cam Kinase test. It is called Moleculara Labs (Dr. C. just clarified it to me, because I wanted to make sure the information was accurate...I had written it down wrong.) She said that they are wanting to make the test commercially available through this lab when it is financially possible, and following all governmental regulations. If you want more information about the blood test, I would suggest that you email Dr. Cunningham. In my opinion, this is big news!

Who are you currently working with to treat your dd's PANDAS? I would definitely ask that dr, because if you are a carrier, you need to get it treated. If you are working with someone like Dr. B., you can always set up a consult for yourself, too, and get those answers. It's certainly a good question.

Welcome to the forum. It sounds like you have been traveling a long road to get here. I am wondering if you have a PANDAS doctor that you are working with at all. You mention that you have to stay in NY State. I've heard good things about Dr. Eric Hollander, though I do not know if he provides IVIG. It sounds like you are pretty set on IVIG and I am going to assume that you have already tried other methods or you know that your son has immune deficiency. Dr. Hollander's address is: PANDAS Center 901 Fifth Avenue New York, NY 10024 212-873-4051 ericholl@optonline.net Academic Affiliation: Albert Einstein College of Medicine and Montefiore Medical Center I had never heard of Dr. Hollander before, but just googled him. Wow...he used a pig whipworm to treat a child's "worst behaviors" of Autism, and it helped. Apparently, there is research showing that it helps treat Autoimmune Disorders. Anyone else heard of treating PANDAS, Autism, autoimmune disorders this way?

Diagnostic radiology inserts it while the person is anesthetized (not put to sleep.) Takes about 1/2 an hour to insert. I did absolutely nothing to the PICC line, except that he could not get it wet...including sweating (that was VERY tough over the summer, and finally proved the demise of the treatment, because it got sweaty one time, and he was starting to get skin breakdown.) He had almost 2 months. Homecare brought the meds, and showed me how to do it (I used an infusion company that had experience.) It really helped a lot, but we couldn't continue both because of the eventual skin breakdown, and also because he developed severe reactions to flaggyl and then azith (neither of which he had had when on orals), so we were stuck with just using cleocin (which was definitely helping, but he needed more than one abx.) It was a a lot of work...first round was every 6 hours including during the night. Then we got down to 3 times a day, but that meant I had to cut work short, and go get him at school...hook him up, and drive him home while he was "infusing" (it was the end of the day.) He couldn't go to camp, and refused to get together with friends, because: "what if they saw it?" But, I would definitely do it again if necessary. There's no question it saved his life at that time (he was very, very sick...we had no other options.)

Yes we are very lucky to have these scientists/researchers/doctors working for us. The doctors who have jumped on board are, literally, lifesavers, and those of us who have been around multiple years knows how impossible it was to find anyone even just 3 - 4 years ago. If you get a chance, thank them. It can't always be easy for them, because they have to deal with the "mainstream" thinking they are crazy! (but we know better...they're angels.)

Haha...same boat we were in with CHOP and Elia (I'm really glad beesknees that you got such good help there, though.) Just to note that I agree with JAG...we actually have 4 docs simulataneously (Peds Neuro, Immuno, DAN and Lyme.) When we started this process several years ago...there were no docs that I knew of, and I finally found 1 in NJ who, although, diagnosing DS (after 4 years of having gone from doctor to doctor), only sporadically treated DS, and as a result DS got horrendously worse.) NJ doc was way closer than all the other PANDAS docs, but he wasn't right for us. We moved on. Now we deal with our team of docs (and, yes, they do all know about each other.) I never thought I would have to deal with so many docs, but the reality is that this is a very complicated disorder. PANS is a horrible beast. It not only affects the child, but the whole family. I was going crazy (literally) when I couldn't get help. I still go crazy someitmes (like tonight when I had a heart to heart with DS15 about how this is just as hard on me and DH and his brother, who also has PANS as it is on him, and that I also get very depressed sometimes. But that we have to work together.) If you are not confident in the doctor that you are seeing, you need to find another doctor. I also didn't think that I would resort to IVIG. Then I realized that PANS was just way bigger than I was, and now I've tried it all. And, I'm glad I did and am continuing to do so. Do what feels right to you. But, don't every say never. You'd be surprised how your feelings may change as time goes on. Good luck with whatever you decide on this.

"Autoimmune Diagnostics for Heart and Brain"

No problem with the question :-) No comment about the White Paper (I suspect it's all very political, and they have to be super careful about what they say, or maybe they're afraid that things could get worse??) The lab start up is to get the test on the market (she told me directly)! If you know of anyone who may fit the criteria for the IVIG study, have them apply. The worst that will happen is that they won't be accepted. I think they still need quite a few children, and the sooner the study gets completed, the sooner IVIG may be accepted.

What seemed very clear to me at the conference, was that for the most part, they were preaching to the choir. There may have been some drs. there who didn't know much about the role of post-infection, but everyone there basically believed that it was a problem. Dr. Newell arranged this conference, because she was at the 200 dr. conference last year, and was really moved by what came from that. She wanted to do something, and there was also private funding that helped pay for this one. So, the doctors were free to say what they needed to say. Not that they didn't stick to bonafide research. This was very research oriented...studies that have been done, studies that they are considering doing, even hypotheses for studies that should be done (so if anyone wants to do studies, feel free.) Re: Dr. Cunningham. She didn't say what she was going to do with the current samples. She did say that they are now trying to open up their private lab. I would suggest that you email her (although she did say that she was loaded down with lots of calls and emails about tests she wasn't allowed to run (it really wasn't her fault...she was not allowed to run them, because the committee that decides that told her that there were 1000 kids...get the research written up and out there...which is rather good. I know that she is hoping to have the lab open within the next few months if she can get the funding. Maybe email her and ask what you can do, if you're interested. Also, SmartyJones, they talked a lot about viruses. Seems very clear that viruses are a big part of the problem. Honestly, the conference was so amazing, that I haven't stopped talking about it. My kids are getting tired of hearing me refer to it all the time :-)

She didn't say if she thought it was another source of infection, just said that if there is a swallowing disorder, that there should be a swallow study done. Maybe she is concerned about covering all bases. Also, she did say that you should rule out all other possible diagnoses, before determining it is PANS, so maybe that's another thing she's thinking. She seemed very concerned about making sure that the naysayers had nothing to base anything on (she actually made a comment about them...and it wasn't terribly positive...lol) So, maybe the purpose was to make sure they couldn't come back with that. Honestly, I don't know her reason.

She did mention it, but honestly, she was speaking while we were eating (she squeezed herself in during lunch,) and I didn't get as much info written down.) There were not many members of the forum there, so I'm not sure who else will respond here. Hopefully, someone will write about CLIP.

I just posted a lot of my notes on the PANDAS forum (someone there asked for the update.) Too much to post in both places. So, if you're interested, please check it out there. It was totally phenomenal!