Zs_Dad

I totally agree with LLM. Our DD7 with PANDAS has over the past 4 months had 4 teeth come out and new ones growing in. TICS had been under control for a while, but I feel like we have seen a bit of a resurgence. Certainly when teeth come in there are little micro breaks in the gum which can expose the blood stream and immune system to strep. I also wonder if the observation that tics tend to fall off after puberty coincides with when our permanent adult teeth are in. Just a thought.

Ugh...tics are back (but different) So after a 95% improvement after 7days of antibiotics we thought we were good to go. Our DD stayed relatively tic free, especially the most unusual of tics (facial grimace/teeth clenching/hand clenching). She developed a rash on the neck and scalp around the time she improved. We were all wondering if perhaps it was the antibiotics and a drug allergy. Ugh, it turned out her and her brother had lice. We treated both of them with the Rid shampoo and the next few days she started increasing the frequency of her tics. She was originally put on a 10day course of antibiotics and then was transitioned to a twice weekly course of azithromycin. For the last week we have been trying to identify the possible triggers (possible food, environmental allergans). So frustrating and difficult to figure it out. Today, as recommended, she received another chemical shampoo for the lice and the tics this evening seem much increased. Ugh....not sure if we should put her on full course of antibiotics for 30 days or whether the increase relates to the chemical exposure of the lice shampoo. Also plan on getting some allergy testing done to see if perhaps something in the home (mold?) may be a contributing factor. Anyone have similar triggers after these types of exposures? Value in longer full strength course of antibiotics?

This happened to our DD as well on Day 7 after beginning Cefadroxil for her first PANDAS symptoms. Still trying to figure out the source.

Improvement at day 7 after antibiotics!!! Wanted to provide our follow-up status for those of you who may have new PANDAS diagnosis. Also will provide details regarding Dr. T’s recommendations, tests, and follow-up. Perhaps this will be helpful for those that are not yet connected with a PANDAS doc. Again, our 6yo DD started with relatively quick onset motor tics (started with sniffling, then began adding some eye blinking and this very unusual facial grimace/teeth clenching/hand clenching). As with most parents, our first response was to tell her to stop doing the movements. But at the end of the first day of her doing it we realized the movements were entirely involuntary. A google search for "involuntary movements in children" brought us to understand the proper term was a "tic." Our first evening of research on tics made gave us information on the spectrum of tic disorders....from transient tics of childhood to tourette's. We hoped that perhaps this was just transient tics of childhood and was encouraged when reading that 20% of school aged kids will get them and just grow out of them. At that point we weren't clued into PANDAS. The following day I spoke with a recommended pediatrician who told us about PANDAS. Especially since my son and I both had strep about 4-6 weeks prior. I had strep throat and he had a perianal strep rash. Our DD never actually had any symptoms and was never treated (nor was my wife…now I wonder if we did if this never would have occured). The pediatrician recommended beginning Cefadroxil and gave us the name of Dr. T who thankfully is in the same state as us. We saw Dr. T the following day and he felt the symptoms were consistent with PANDAS. He was extremely knowledgeable, does great with the children, and spent loads of time talking to us. At this point we had tons of information (from the internet and pediatrician) but not really sure how it all fit in for our DD. He gave us his experience with how other children have done, what the spectrum of severities are and the treatments that are available. He felt our DD was a 2/10 severity. He did say that with PANDAS future relapses can occur with increased severity. We were directed to obtain blood tests (whole family) and continue the antibiotics. Regarding the tics, everyone agreed we should just ignore them. So our DD began antibiotics and we waited. The most difficult part was for my wife and I, our DD had no clue she was even tic'ing. The biggest challenge was waking up and hoping that the tics would miraculously stop, and for days it didn't. Thanks to this wonderful forum we were encouraged to wait patiently and add some adjuvant therapies (magnesium and probiotics). We also cleaned up her diet and improved her sleep time (couldn’t hurt). The evening of Day 6 on antibiotics was when I noticed the first signs of improvement. My DD would do the facial grimace/teeth clenching/hand clenching at times of frustration or excitement. And every time I would come home she would run to the door in excitement...smile...smile...smile...facial grimace. I came to accept it. But finally in the evening of Day 6 I came home and she greeted me without the grimace!!! Over the next 24 hours she improved markedly. The facial grimacing/teeth/hand tic stopped but she continued to blink and sniffle (albeit less frequent). And then the blinking stopped. And then the sniffling slowed down. Yesterday she perhaps tic's a few times all day. I described to Dr. T how it was interesting how the tics came on in a specific sequence and then regressed exactly backward. He said many parents describe the exact same thing. Almost like playing a movie backwards. Perhaps related to the mechanism of why this occurs. The labs drawn for everyone was as follows: DD (PANDAS): CBC, Lyme titers, Pneumococcal titers, IgG levels, Mycoplasma titers, Vitamin D, Ceruloplasmin, Ferritin, ASO, Streptozyme, Anti-DNAse B strep antibodies DS/wife/myself: Mycoplasma titers, streptozyme, Anti-DNAse B strep We followed up with Dr. T yesterday to review our labs and come up with a game plan. He felt our DD falls into the typical scenario of PANDAS, both by history, exam and lab values. He commented that the lab results were consistent with what he sees in 70-80% of PANDAS kids. Regarding our long term plan, Dr. T recommend prophylactic antibiotics perhaps until her teen years. We will begin with the antibiotics for now and hope to do some research on this forum to see what others have done. It’s difficult to think about keeping someone on antibiotics for perhaps 10 years. In asking Dr. T about what to expect…he said relapse is likely. He said others have noted that when the relapse occurs the symptoms are more severe, but not necessarily. He hopes that the antibiotics will decrease the likelihood. For our DS, he felt that he is at risk of a PANDAS. He has seen siblings both develop it. Although our DS is asymptomatic, he just suggested we keep a close eye on him for any similar symptoms. No prophylactic antibiotics. My wife and I have begun a short course of antibiotics to clear our carrier states. So we are extremely grateful for the 95%+ recovery within 7-10 days after antibiotics. We are thankful for all the information and all of you how have shared your experiences on this. Let’s hope that in the near future they have a better understanding of PANDAS. I wouldn’t be the least bit surprised if some day they come to realize that many neuropsychiatric conditions are in fact post-infectious in etiology.

Thank you tampicc. It's helpful to hear supporting comments from other parents who have gone through this. So far we are sticking with ignoring the occurence of the tics. Although they happen at school, the teachers say it isn't interfering with her experience. We've been trying the ibuprofen, but it's hard to tell if this is helping. I get the sense she isn't tic'ing as much in school (according to her teachers) but when she comes home it really is frequent. I can't yet tell if she actually knows it is occurring. She's been in front of the mirror a few times when it occurs, but I'm not sure if her brain is registering it while it is happening. It's almost as though her brain totally check's out while it happens and then picks up immediately where it left off before the tic started. It would be great if she wasn't ever aware and no one ever brought it to her attention, but at some point it is going to come up. Regarding the magnesium and epsom salt baths. We purchased Natural calm from Whole foods but weren't sure exactly about the dosing. I'm sure it's been discussed on one of these forums. I'll have to do some digging. Thanks again for your input. I hope ur ds is doing well.

I appreciate the advice. We haven't had her formally cultured, just tested for the titers (all still pending). Usually if a culture is done they can check the sensitivities to various antibiotics. Hopefully she improves soon with cefadroxil. If not, it's hard to know if it is because of the antibiotic choice, the bacteria, or just need for more time for the antibody levels to drop. I wish it was more cut and dry. Hopefully the blood tests will shed some light on what is going on. Thank you again for taking the time to share some advice.

The last few days has been a bit of a roller coaster for my wife and I. Our dd, who just turned 6, returned from a week with her grandparents who reported the start of what we now realize are tics. As I guess with many children, the tics came out of the blue. She has been otherwise healthy and in fact never had a known strep infection. Her tics include a sniffing tic that can occur unbelievably frequently, occasional eye blinking, and most disturbing is a facial grimace/teeth grinding/hand clenching that occurs. The sniffing was probably there for 1-2 weeks. We didn't think much of it, perhaps some seasonal allergies. But then she began with the facial grimacing/teeth grinding/hand clenching. Our first instinct was to tell her to stop doing it. We quickly came to realize that it was entirely involuntary. It's breaks our heart to see her when this occurs and it seem to be happening more frequently. She is this wonderfully energetic happy child who carries a big smile one second...only to follow the next second with this motor tic. Had you not known her you would think she was possessed by a demon when it occurs. The day we noticed the tics we spoke with a pediatrician that tipped us off to possible PANDAS. Although she never had a known strep infection, I myself had a strep pharyngitis 1 month prior and our 4 year old son had a recent strep rash requiring antibiotics. Because she was never symptomatic we never had her on antibiotics...I'm sort of regretting that one. So Labor Day Monday we started her on antibiotics...she's on Cefadroxil bid. The following day we got an appt with Dr. T who felt the PANDAS diagnoses was possible. It was comforting having her seen by an MD familiar with the condition who will hopefully guide her through this. The family all went for labs this morning....hopefully this will shed some light on the situation. Unfortunately, 3 days into antibiotics and no improvement thus far. I'm not sure if that means we aren't treating appropriately, whether this is not strep related, or whether we need to just sit tight and be patient. Our emotions are all over the place right know. I've spent countless hours reading on the topics, reading the other posts on this forum, reading the stories of so many children. It's been extremely helpful to have the resources, but we can't help but think about where this roller coaster is going and when/if/how it will end.....It's hard but we're trying to stick to our usual philosophy that things happen for a reason, and happen for the best. There has definitely been emotional/crying times these days/evenings. I hate waking up hoping that perhaps the tics are gone...only to see them occur within the first few minutes of her waking up. She doesn't seem to be bothered by them, it's mostly us. She started school yesterday and tics at school. Thankfully for now it doesn't draw much attention. Perhaps she suppresses them there, because she seems to do it so frequently at home at night. So our current game plan is antibiotics for 10 days....to be extended to 30days if she doesn't improve. For the time being we are waiting on the labs and ruling out Lyme and mycoplasma. At this point, Dr. T didn't think steroid were in order nor any low dose clonidine for the tics. We are planning on reading up on the book regarding homeopathic strategies for tics suggested on the site. Any other suggestions? Probiotics? Magnesium supplements? Wasn't sure what would be appropriate for a 6 year old. Any suggestions or tips are appreciated.