Kayanne

Thank you for sharing yourself with us. This forum and the world is better for it.

Happy Belated Birthday!! Yesterday, My PANDAS daughter turned 8...I hope your birthday was as great as hers.

I'm really happy that this has been an easy transition for Allie!! You're a wonderful mom!!

I'm pretty sure that my daughter didn't have hallucinations. However, I remember other parents mentioning this as a symptom. I just wanted to reassure you that it can be a symptom of PANDAS.

Clindamycin is what finally kicked the strep infection for my daughter. We gave her 300mg 3x/day (total of 900mg daily) for 10 days. We dosed in the morning, after school, and before bed. We didn't worry about probiotics at the time...it was impossible to get her to take Fish oil that the pediatric psych recommended, so I knew probiotics were out too. That was even before I found this forum, so I assumed that probiotics should be taken when the course of antibiotics was done.

I did a quick search on pubmed, and found these. I didn't read them yet. The first looks like basic information, but I am very interested in the third article about impulse control. Getting a Knack for NAC N-Acetyl-Cysteine: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036554/?tool=pmcentrez ---------------------------------------- Glutamatergic Synaptic Dysfunction and Obsessive-Compulsive Disorder: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036554/?tool=pmcentrez ---------------------------------------- The Neurobiology and Genetics of Impulse Control Disorders: Relationships to Drug Addictions: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2222549/?tool=pmcentrez

dcmom, I just wanted to let you know that I sent you a personal email. I've been thinking about you and your girls and sending positive thoughts. Best of Luck.

Here is her website: http://www.e-pandas.com/index.html Searching the internet for almost a month after our ped told us about PANDAS, I was only ever able to find Janice's site, and the NIMH site. I didn't find this site until I finally googled "short term memory loss and strep" and a post came up. I thank God that I found this forum.

I'm really happy you're seeing improvements--I hope it continues My PANDAS daughter does this from time to time. I've never considered it to be OCD, but you can bet that I will pay closer attention next time she does. You just raised a flag for me. Something else just came to me...My daughter likes to know where things came from. "Who gave us this toy? Where did we buy this?" Has anyone else seen this same thing? However, overall, I don't see how doing this once in a while would be considered a critical level of OCD. Her life is just not disrupted right now, so the little things like this I feel that I have to kinda accept them as part of who she is. At her worst, she didn't look like a typical OCD case either. We've discussed this before, and she had definitely more of a cognitive fog and/or shut down/ADD/autistic presentation.

i'm curious kayanne, by "people" do you mean parents or pandas doctors? or everyone involved? thanks. Thank you for calling me out on that...of course it is very vague. I would never presume to know anything that a doctor may think--unless it was stated directly to me in person--even in that situation I would still interpret it to apply to my child only. I was just referring to the general beliefs of this forum...and I should add that just because it is generally believed by the participants who post here...it doesn't mean that in actuality it is true. I hope I explained that well enough... Sorry for the confusion.

Don't take my word for it because I am not an expert at all. The way I understand it is, once the strep is no longer "tagging" parts of the body/brain because it has all been eradicated, then the body will stop producing the offending antibodies. However, it can be a slow process--over several weeks for the anitibodies to recede, and then for the brain to heal. It's not the actual basal ganglia that the immune cells actually attack. It is the chemicals that the strep creates as a decoy, and then plants it on certain body parts--and the basal ganglia is hindered in the process. This of course is based on the original research that showed a significant remission between episodes...so it was theorized that the antibodies recede. And they made a lot of correlations with RF and SC, which also shows remission. But I think after listening to Dr. Swedo's interview, I am under the impression, that there are still too many unknown factors. So there could be some likelihood that this ends up being a continuous autoimmune problem once the right circumstances are set in motion...beats me as to what those circumstances are, though. So, for now, I think most people assume that if you still have symptoms, then you still have an underlying infection.

I think this is really good advice. But considering the "autoimmune" component to this, you wouldn't really see results until the offending auto-antibodies recede. And also, many have seen a quick backslide when the antibiotics are stopped, so clearly there are some other benefits to the antibiotics...it's just not fully understood. However, generally doctors do know that many types are anti-inflammatory. So it can be a long process. I agree with Momofgirls, and she explained it well too. That is why I think dropping down to a prophylaxis dose before symptoms are gone is jumping the gun a bit. It's a dilemma -- You don't know if the infection is cleared until the symptoms are gone.

Good luck with your appointment. Both Keflex and Omnicef are cephalosporins. They are a separate class of antibiotics, that are either derived from penicillin or are similar in chemical structure to penicillin--I'm not sure, I don't understand it, but that is why there are warnings about penicillin allergies if you take a cephalosporin. I was told that with the first generation cephalosporins (Keflex is one) it is rare but possible to have an allergic reaction if you have had a reaction to a penicillin. And that with the third generation cephalosporins (Omnicef is one)it is a possibility, but it is practically unheard of. This particular allergist/immunologist told me he has never seen it. Our pediatrician thinks that cephalosporins are better for strep than penicillins. My daughter is currently taking 150mg (about half the treatment dose) of Omnicef daily as a prophylaxis. It has been more of an experiment for us, because we really didn't know what to give her. She has had a rash from amoxicillin (twice), so the penicillin class of antibiotics is out.

I didn't really realize that Bicillin injections were an option for "treating" PANDAS. I just figured it would be as effective as penicillin because it is just an injectable version of penicillin. I can understand using it as a prophylaxis, but if there is an active infection suspected, I don't know how effective it is going to be. I'm sure you've seen it, but I'll re-post it anyway: http://www.entrepreneur.com/tradejournals/article/169459644.html

My daughter weighs about 52lbs and she takes 150mg of Omnicef daily.

I asked an allergist/immunologist if there was such a thing as a narrow spectrum cephalosporin. He said no. I took that to mean that all cephalosporins will have a negative impact on gut flora. Last year, my non-PANDAS daughter took ceftin for a positive strep test, and a sinus infection. Her pediatrician told us it was a heavy-duty antibiotic, but he prescribed it because he felt it would also be good for her sinuses. He also said it was nasty tasting...my daughter agreed with that, but was nine at the time, so didn't give us too much of a hard time with it. My pediatrician likes the cephalosporins class of antibiotics...but he usually prescribes omnicef or duricef. My PANDAS daughter currently takes 150mg daily of omnicef as a prophylaxis.

Wonderful!! Thanks for sharing it

My daughter has taken monthly steroid tapers twice in response to actual infection and/or exposure to strep. The first time we saw improvement throughout the month, but were still worried, and at the very end, she improved very dramatically. So much, that we kept her on that dose (5mg daily) for another 2 weeks to be sure we were fully addressing any inflammation. The second time, it was caught earlier, and by the end of the second week, she was 100% - we still finished the taper.

Are you talking about Azith (or advil)? My dd took 250mg/day Azith. when she was 45 pounds. When my daughter was first treated for PANDAS, she was also put on 100mg of azith along with a month of prednisone. I was also skeptical, but in our case, there was good evidence that the strep was cleared, and we were only dealing with the autoimmune component at that time. From what you have written about taking a biggest hit from a virus, then perhaps the prophylaxis dose is more appropriate? You would need to ask your doctor specifically why they chose this dose.

First noticeable episode: 6rs old (I believe some "fussiness" around 3 - 3 1/2 yrs old in the past could have been PANDAS) It took us about 2 months before she was on prophlaxis antibiotics and a monthly prednisone taper. During those 2 months she kept testing positive for strep, so she did take 5 different antibiotics. Yes, she has been able to achieve complete remission twice so far, and is currently still there.

We never had an autism diagnosis because we were put right onto the PANDAS trail by our pediatrician. However, at my daughter's worst, she looked severely autistic. Her teacher told she looked just like it. It was very scary to see a perfectly normal, independent 6yr old decline in a matter of weeks. No doctor ever brought the autistic term up...it's ridiculous to say that a child "gets" autism over a couple of weeks. Although I am worried for other children that have this happen earlier in their development.

Can we pin this to the top?

My husband's side of the family has a lot of anxiety issues, and also a lot of mitral valve prolapse/relapse -- never bad enough to warrant medication. When my husband first started being treated for his panic issues, the psych suggested a book called "The Anxiety Disease", and in there it mentions a higher correlation with mitral valve issues and anxiety... Some day, I think, people are going to realize that strep/pathogens are more insidious and stealthy...

Thank you!!

Colleen, Do your children show an increase in PANDAS symptoms with the other types of strep, and do you think you could list which ones they were? Last Feb, my daughter kept testing negative, the other 3 kids were positive on the rapid. Her PANDAS increased. I just assumed the pen vk was causing a false positive, and Dr. L, said you can't tell what is deep in the tonsil--take 'em out. The ENT said the same thing you are saying...it only tests for Strep A, and another possibility was that it was another type of strep. But that is not discussed on this board a lot...so I was curious if you could elaborate on your situation. Thank you!