taffeelion

1 year update We're about 1 year off Abx and she's doing great. She still has some very minor vocal & motor tics and there are times when she gets hyper and agitated with new tics, but it's completely manageable! Nothing like what happened last year when overnight she wouldn't sleep, acted manic, and had multiple tics (at 3 years old). It's like I have my baby back and even if it's 95-99% instead of 100%, I'm grateful! Does she have PANDAS? I don't think I can ever be fully sure, but she was positive for Strep with no other symptoms at the time of the Incident. She started Abx within 10 days and stayed on for 6 -8 weeks. It's possible she has Tourettes and Strep was a coincidence, but the connections and timeline lead me to PANDAS. This is getting so much more research and publicity. Hopefully soon families won't have to suffer so much with the unknowns. I really thank this forum for being a support for me.

Update, After I wrote this, DD had lots of trouble sleeping. I called the doc and he gave a Clonidine script. I finally used it because she just wouldn't go to sleep! She then got very hyperactive with more tics. I took her to the ER that Sunday because she was walking weird. She said she was 'sad' (never said this before) and her personality turned to a mean, hyper little girl. I was so scared. She walked much better at the ER and they said she was fine - they told us to schedule a neuro appt noting 'personality change' (I guess neuro will see her quicker if this is mentioned). The rest of the day she was hyper, no nap again, but... Sunday night she actually went to sleep with no Clonidine and slept for 11 hours! Monday morning (day 10 of antibiotics) she was 90% back to normal! Minimal tics and acted like herself! I was extatic, but still worried about whether this would happen again and when. I took her to her 3 year doc appt on Tues and had a great appt with her Ped. He kept her on Abx for 6 weeks. So far, so good! She's 95-99% back to normal now. While I continue to be worried about this happening again when she comes off Abx, at least the doc & I know what we will do. Hopefully this won't happen again, or if it does, it won't be worse. Thank you all for helping me out through this.

"A vaccine which prevents GAS infection may be the only effective way to control and eliminate GAS disease." http://www.discoverymedicine.com/Anna-Henningham/2012/05/16/pathogenesis-of-group-a-streptococcal-infections/ article also has a PANDAS nod.

I'd been thinking and thinking about this and I got stuck at a GAS vaccine. Then I went searching for one. Well, there isn't one available, but there are a few that have been created, tested and published. They need to go through clinical trials. I wonder what's going on with these vaccines? I've seen 1 clinical trial (http://clinicaltrials.gov/ct2/show/NCT00264784?term=strep+vaccine&rank=5). It was completed in 2007 and I can't find more. I know before (in the 60s?) they tried a GAS vaccine and it was stopped because the vaccine caused RF. That makes complete sense if you understand the autoimmunity process. They basically made the vaccine to an unfortunate part of strep - a part that is similar to protein found on human tissues like the heart, kidney, brain (further evidence of the autoimmune response to GAS). These new vaccines made in the 90s and 00s are supposed to not cross-react with human tissues - what is taking so long?? Couldn't this potentially cure GAS diseases??? Here's one article http://www.newscientist.com/article/dn6262-vaccine-against-rheumatic-fever-shows-promise.html and another from 2007 http://cid.oxfordjournals.org/content/45/7/863.full Once I can be sure my baby is OK (don't know how long that will take), I'd love to focus on PANDAS research.

Went to Duke children's ER last weekend (everything's OK! DD3 is doing much better , as of right now she's at about 95% - hope this lasts, we are only 2.5 weeks post positive strep test & start of Abx). The doc (resident?) never heard of PANDAS and called up to neuro who told her they don't believe in PANDAS. She said she then looked it up herself while we waited and thought it was a feasible diagnosis. She then got an earfull from me to relay back to neuro. I told her children may suffer due to their close-mindedness. That the NIH and insurance companies 'believe' in PANDAS. That their lack of medical curiosity is ridiculous. I told her I don't what's wrong with my daughter, but I'm damned sure not going to dismiss PANDAS because of a pre-conceived belief. She said maybe that was a bad choice of words. I agreed.

Hi Heveritt! I'm looking in Durham & will email you asap! Thank you

I'm in Durham, NC near Raleigh & Chapel Hill. I would love suggestions of good docs! I'm anticipating that getting longer/different antibiotics is going to be a tough sell to her regular ped.

My basic questions are, what should I ask & tell my doctor on Tuesday? When should I see the maximum effect from antibiotics? and, am I overreacting? Here's my story so far: 10 days ago I noticed my 2 year old daughter touching her shoulder to her ear and thought maybe her ear is itching. 9 days ago I realized this was a tic as she was doing it over and over a few times a minute, also she was making some noises (clearing nose, humms, small grunts). I panicked and cried and looked up everything online. 8 days ago I took her to an unscheduled appointment, her pediatrician was not available so I saw another doctor there. The doc actually mentioned a strep test before I could (I'm sure he guessed I would request one after I told him I'd been online). Basically my thoughts were that nobody in our family has tics, these seem to come on overnight and they were 'complex' involving motor and vocal tics. I was going to beg for an antibiotic if needed, he did not seem like the flexible type. But - no need! She was positive for strep with the quick test. Since she had no strep symptoms he pretty much hinted that she might just be a carrier. He gave her a 10-day ceph script and a neurology referral for October. 7 days ago her tics looked worse to me. She was tired and watching TV and was tic'ing away. I cried again (crying has been a theme). 5 days ago her motor tics decreased, vocal ones are about the same. She also had lots of trouble going to sleep. I had to rock her to sleep at midnight. 4 days ago was her birthday & and a big birthday party. She did well, no-one noticed anything, but I still did. Had to rock her to sleep again around midnight. Since then the tics are about the same and pretty mild, the sleep is better. I thought since she seemed better, the tics would go away, but they have not. I am obsessively worried. My husband and parents are not, I think they are more worried about me! I have serious anxiety if I see or hear her tic - I get knots in my stomach and have trouble sleeping myself. I feel I haven't taken a relaxed breath since 10 days ago! Her 3 year old well-check pediatrician appointment is Tuesday and I want to go prepared. I've read that it may be a good idea to do more than a 10-day round of antibiotics. I'm going to ask for a new script for Azith. In this case, I think better safe than sorry, right? Are there any other suggestions of what I should say to my doc or what I should ask for? A rheumatologist referral? This doctor is her usual ped, not the one she saw last week, so I have no idea what he thinks of PANDAS. A note that I have not noticed any OCD or other major negative behaviors - no separation anxiety, but she is so young and I still can't fully understand her speech. Also note that I had Graves disease (autoimmune thyroid) at a pretty early age. Thank you for this forum! Maybe I can go to sleep now instead of search Youtube for more PANDAS stories...