amy s

I totally agree, .... bacteria/viruses and what about severe vitamin deficiency (which---given how we know viruses work, the deficiency could be caused from bacteria/viruses-!!!) Just google vitamin mega doses and schitzophrenia or vitamin deficiency and schitzophrenia. A lot of people are talking about this now. Some are apparently disproven, but these days I don't discount anything. I have seen some amazing things happen in adults once vitamin/mineral were stabilized. (please if you are a parent looking for help for your pandas child, do not just independantly begin a vitamin mega dose without a physician's guidance- some vitamin over doses can cause severe problems....google 'vitamin overdose' for some examples)

Nope, no issues with weather. Allergies in spring and fall but those don't bring out pandas symptoms for my dd.

I have to say, have a vision check just in case, but this sounds just like OCD to me (esp the part about not stopping until you acknowledge and that there is obviously nothing to be seen)...but you didn't mention the frequency. I'm just curious. However, some kids have some vision changes with PANDAS. Some have 'flashy lights' and colorful lights and there were a few times that my daughter ran straight into playground equipment, etc when she was in exacerbation. I did have my dds vision checked during exacerbation (was NOT within normal limits) and then after IVIg (20/20 vision). It is amazing how many parts of their little lives this effects. Wishing you the best. Keep us posted on how the steroid burst goes. regards, amy s

My dd had mycoplasma, strep A and B, and bartonella. I don't know when mycoplasma and bartonella showed up but my dd was exposed to scarlet fever (in household) about 8 weeks prior to onset of symptoms (and she DID have a sore throat and fever- but cultured negative so they did not put her on antibiotics) I consider her pandas symptoms to be very severe.

Yes, my dd had this but without the quality of tics that you describe. I think my dd had Ballistic OCD rather than tics. She had a sedated MRI during this period and nothing was found, though. Nothing found on 2 EEGs during same time period. However, SPECT scan did at least show inflammation in the basal ganglia. Also her titers were elevated but not sky high. But by the time we checked titers, things had been going on a LONG time. I really have a lot to say on this subject, and I have spent and hour writing it only to delete it.

Yes, my child had issues with certain noises like coughing and throat clearing and stomach gurgling. Everytime she heard me cough, clear my throat or my stomach gurgle she had to say certain things to me. That was how part of her OCD was. I took it to mean that it was very bothersome for her but I really don't know if it was noise sensitivity or OCD. Anyway, I wanted to answer in case it is this type for you.

Really great news, Ellie. Thanks for sharing!

http://www.amazon.com/Neuropsychiatric-Dis...4461&sr=8-6 I have this book. It's good, I've read it cover to cover. This was before treatment for PANDAS, but I knew about it. I bought it so I could convince physicians. It helped. It is British, bu that's ok. It does mention PANDAS.

Continual Augmentin 250mg daily. We are keeping her on it as long as we can keep getting a doc to prescribe it.

She had the standard 2 day IVIg at Dr. K's dosage. Only required that once. Regarding coming and posting updates here.... I come to this site almost every day, several times. I wish I didn't. I am suffering from PTSD from our experiences and I really feel like I personally am doing better if I miss a few days. I do try to post updates when it seems appropriate though. Also, to be honest there are times that our experiences just don't match the conversations and so I find it strange to post at times. I am always thinking of these kids and families on this site and wondering how they are doing. I would love to meet up with some of you in Chicago if anyone is going to the Autism One conference, let me know!

I feel that my dd has had a very successful post IVIg treatment. She had IVIg 14 months ago and has continued to be well. She has had one tiny flair (7 months post IVIg) in symptoms after an exposure (a whole weekend) with strep which we gave her full strength antibiotics for and she immediately got better. She has done fine with H1N1 flu and viral illnesses that she has gotten. Negative side affects? She got really constipated for about a week. IVIg saved her life and perhaps ours. She was very severe and considered 'classic' pandas, with sudden onset. She for sure was exorcist type without the supernatural stuff. She didn't really have tics but severe OCD. She was age 5 at symptom onset and had near constant symptoms (very little waxing /waning that I hear people speak about) until she had her IVIg at age 7. She had changed to a completely different child and now I have her back. I don't know the prognosis. I don't trust her to respond appropriately to strep, that's for sure. When she was 3 she had post streptococcal glomerulonephritis too. I'm not thinking IVIg is a cure all necessarily. And I would do it again if we needed to in a heartbeat. Good luck with your decision. I hope your child gets well soon. regards, amy s

Yes, my dd tested + for bartonella. She had multiple ongoing infections at the time...but zithromax 250mg daily for 6 months was given for this (plus for the mycoplasma pneumonia) and she was also given PCN injection monthly to treat all (plus the strept)....(later was switched to Augmentin instead of PCN) IVIg for my dd was extremely successful for my dd (she is 15 months post IVIg). I know some do zithromax and rifampin together for bartonella. I am sorry to hear about your son and hope he gets well soon!!!

You know, I wanted to say that my dd's first exposure/pandas issue was group A (scarlet fever in household). But she was tested postive for beta strept over a year later (same long horrible exacerbation) and no longer was testing positive for group A at that time for whatever reason. She had tested positive also for mycoplasma pneumonia at the same time and so she was put on daily zithro and monthly injections of penicillian. After the course of zithro to rid the mycoplasma, we switched her to Augmentin after consulting with Dr. K and then she had IVIg very quickly after that.

My dd also had beta hemolytic strept rather than group A

Ok, I have to say that my dd's pupils since her main exacerbation are always dilated bigger than the average. Even after 13 months post IVIg and supposed remission she still has very large pupils. I remember back during her big exacerbation we used to see dramatic changes in her pupils, right before our own eyes. I don't remember now exactly what changed about them but I remember that it made me drop to my knees in the middle of a grocery store and grab her by the shoulders out of fear.

I recommend that first you send him an email after reading his entire site. He will respond back to you, usually very promptly. Make your email a thorough history of your child's symtpoms and medical history. The email and telephone consult I did with Dr. K ended up being very helpful to us and to help our pediatrician here make decisions. Good luck to your family.

WorriedDad- I share dcmom's sentiment here. Your post also brought tears to my eyes. I am thrilled for your child's success. Very much hope for continued improvements....for everyone here.

My dd saw one specialist who STRONGLY felt that her (2nd) chicken pox immunization played a role. (vaccine May 2007 then exposure to scarlet fever strep in June 2007- overnight explosion in symptoms August 2007)

You know, I've wondered about this. I always thought it was odd that my dd never had issues with yeast the way I hear some other parents talk. I rarely give probiotics. She has been on continuous antibiotics for quite some time. I used to give probiotics like clockwork, but I stopped it and we see no difference.

By the way, the I mention this last one because usually they say that folks with OCD recognize that their demand is odd. That was not the case with our daughter. Technically OCD in kids doesn't require the self awareness. Buster I appreciate this comment... my dd also had NO realization that the demand (however slight) was odd or different in any way, either.

I just wanted to say that this was extremely common in our house hold as well (eventually multiple times per day and lasting hours each day- unknown reasons completely!), and only got worse with life threatening rages (even at age 5-6-7) to accompany them. In fact, this was primarily the reason she became homebound. Since my daughter's recovery (remission?) after IVIg, this is GONE. Along with most all of that other stuff too. I wish I would have put her on high dose antibiotics way back when that symptom first began. (IVIg in Nov 09...felt we had near full recovery 6 or more months later). BUT no more rages < 1 month after IVIg. As far as knowing how it related to OCD, I don't. I never could pinpoint anything that made sense to me as to why these type things happened...and thankfully she doesn't remember any of those things anymore. I hope your child gets well soon. Regards, amy s

Pandas is mentioned in the above article to be published in the above journal Feb 2010. It has a small discussion regarding immunology and anti-basal ganglia antibodies post streptococcal disease. I don't think it will bring anything earth shattering to your knowledge base, but it's being published so that is a plus. I am not sure if it is ok to post the abstract so I will just post the information in case any of you want to search it out. I got the info from MEDLINE®.

I really don't know what led them to test for mycoplasma pneumonia, but they tested for a bunch of stuff because I took her to a Lyme specialist who was knowledgeable and had treated some kids who had pandas.....and since co-infections are common with Lyme disease she just ran a bunch of different panels. Dr. K told me he has treated another child who had mycoplasma pneumonia as the cause of pandas type symptoms too....and I think it's on his website. Good luck mom md, in getting rid of the bed bugs.

Please let us know when you get an update. I hope I can go. I would love to meet up with all of you in person if given the chance to go to the conference at the same time....and if it works out in anyone's schedule! I already realize I might have a conflict but if I can possibly attend...I will be there.

mom md.... I am serious about this. My dd had dozens and dozens of these 'bites' that you describe... for months. We often thought it was related to 'skin picking' OCD (thinking it was just an extension of her already horrible OCD)....what we later realized was that she had 'bartonella' (possibly it was the OCD...but she did test positive for bartonella so we can't ignore that). Yes... cat scratch fever. Never had a cat in our home or around us (dd and dh are allergic). But fleas/tics can transmit as well. This went on at the same time as a big pandas ramp up. All went away after IVIg. Check out bartonella. Zithromax treats bartonellla. We were shocked (!) to hear that she tested positive for that. In addition she also tested positive for mycoplasma pneumonia (why i posted the link today regarding the Nov pediatric neurology journal)....which she had no symptoms for! Long story but before all that she had been exposed to strep (ds had scarlet fever two months before her first BAD BAD BAD pandas episode) which was at least a year prior...with constant symptoms.