MMWG

Hi all- My DS (4) was diagnosed with PANDAS in December by our awesome pediatrician who I love. Since then, he has been through 2 bouts of strep. He tends to present with stomach pain, leg aches, and intense behavioral changes--intense emotionality, fits, fight or flight, etc. We also noticed the presence of something we thought might be a tic--a mouth-sucking type noise that had begun about a month before the strep was detected/PANDAS was diagnosed, and totally skyrocketed in frequency after he finished his first round of abx, prompting the doc to do another round, and several weeks later, the tic went away completely, and he really seemed to bounce back. With the second bout of strep a few months later, there was no tic--but we caught it very early because we knew what to look for. Once again, the first round of abx was not enough--we saw an explosion of compulsion and stomach pain about a week off abx, and even though the strep test was negative then, the doc gave him another round of abx, and he immediately improved. It has been 2 months since our last bout of strep, and a few weeks ago I began noticing the mouth noise returning. I wasn't sure if it was a tic--it was sort of random and not that frequent, but I recognized it. His behavior has been pretty normal. I took him in for a strep test this week just to be safe--my doc said to bring him in any time at all for any reason that had me concerned and they would test for it. Anyway, the test was negative, both rapid and cultured, but I got a call that the doc wanted him on antibiotics anyway, right away. He is out of town this week so I haven't gotten a chance to speak to him, but I am curious why we proceed this way. I am totally in favor of it--I wanted him on preventive antibiotics but my pediatrician doesn't want to do that right now since he responds well to a an extended course at this point (he is very young, and he is also allergic to penicillin, and azithromycin is not effective on his strep--so we want to be cautious about him getting resistent). Anyway, I love that the doc is willing to have him on this--but am curious why--do you think it's precautionary, since the mouth noise was a very early sign last time he got hit hard with strep? Is it possible he has strep but it isn't showing up on the test? The doc is really adaptive about figuring out how this presents in my kid, and adapting our treatment accordingly, which I like.

I know there is an ENT doc near us that has written some research articles about PANDAS, specifically looking at whether the removal of tonsils might be effective in reducing strep in PANDAS patients. I know of her because she was the attending doc when my son was hospitalized for a bacterial infection (which we now think was strep) following the removal of his tonsils. So yes, I think some ENTs are interested in PANDAS because there are ENT procedures that may be helpful in treating PANDAS. That's my guess...

Hi all- My 4 yo son was diagnosed with PANDAS in December. He has had strep once more since then, and we have been working with our pediatrician to figure out the right antibiotic and dosage amount for him with each episode. He responded very well to antibiotics and many of his issues (tic, fight and flight response, extreme emotionality) have decreased significantly. I feel pretty good that we are on top of the situation, and understand the warning signs that we are fighting strep. Without a strep episode, I have a very energetic, happy, brilliant, into everything little boy. He still struggles with his fine motor skills, and has some sensory sensitivities, and is pretty hyper and into everything, but compared to what we were going through before, all in all we have a delightful little boy. Today we had a dentist appointment. The first time he went to the dentist was about 9 months ago, when we were unaware of PANDAS but knew there were sensory issues, anxiety, etc--we feared it would be a disaster but it went fantastic. His daddy took him first thing in the morning, and he had fun. So today we had a checkup, he was excited about going, and I didn't give it a second thought. I took him after we went to the park, at 2pm. He was fine in the waiting room, and as soon as we went back to the examining room, he had a full scale panic attack. Didn't even want to brush his teeth with the new toothbrush (which he loves to do). He wouldn't get in the chair, was terrified of everything--refused to open his mouth and basically screamed bloody murder the whole time. The nurses were very nice, and the dentist, who my husband said was great last time, was really thrown by his reaction this time, especially since he was fine last time. He actually was pretty harsh with my son, when he wouldn't calm down he held his hands down and told him he better stop screaming because he was scaring the other patients. He told him "mommy will have to leave if you don't calm down, and you'll have to stay here by yourself" which I didn't like--I think he figured if he could get him to stop screaming, he would realize it wasn't a big deal to get his teeth examined. However, it just scared him more (of course) and I put a stop to the whole thing. My kid doesn't ever back down, no matter what. The dentist asked me if I wanted to keep trying, and I said no. It was just a checkup, his teeth are fine. The dentist asked me "What was wrong with him" and "what had happened to him" to make him react so differently this time. I just told him he was worn out from the park, and had had a tough medical year and was probably a bit traumatized about doctors right now. The dentist backed off and was very nice to him then, gave him stickers and told him they would try again next time. He said "maybe he would do better if daddy brought him" and we did it first thing in the morning. Maybe. I am trying to figure out if this reaction is a warning sign we are up against strep again, or if this is a fairly predictable response from a kid who has had a lot of strep swabs in the last 6 months, as well as EKG, blood tests, the works. Last time he was there it was all new, and although he had sensory issues, he thought it was neat and liked it. We have seen this reaction from him before in the hospital (when he had his adenoids removed, and ended up hospitalized for a bacterial infection complication--which we now know was from strep), when he had his blood drawn to check his titers, and anytime he has a strep test. As soon as we left the dentist office, he was totally fine, though exhausted (he fell asleep in the car on the way home. Thoughts? Would going through the PANDAS wringer and being worn out elicit that kind of reaction in our kids? He is a pretty intense, emotional kid anyway, but I didn't see this one coming.

Thanks all-- To answer your question, yes, when he has a fever he is quiet and calm, that is usually how we know something is up! Called the pedi last night, and he gave the same advice you all did. Brought him in this morning and they think it's viral. Super! Strep and the stomach flu!!! Thanks for all your help last night! I just have to ask...how are your son's PANDAS symptoms while he has a fever? My daughter seldom got a fever, but when she did...it was like a vacation from PANDAS! I do hope you son gets feeling better gut bugs are not nice!

We have been on abx for 5 days now, round 2 (see earlier post). He felt poorly all day today and complained of stomach pain, had constipation then diarrhea. He had a fever of about 99 around dinner time, i gave some tylenol and he seemed fine before bed. I went to check on him and he was burning up-102.3. Can this happen on antibiotics? Should i call the doc? ER? Please help!

I found Dr. Sears drops and chews online--are they a good choice? Others?

My kid gets VERY hyper when he has strep--he's really high energy anyway, but he swings from the chandeliers with strep. ADHD like symptoms are a PANDAS thing.

Hi all- DS age 4 is going through his second round with strep since our diagnosis in December. First time, we did 5 days Azithromycin, noticed a spike in symptoms about a week after coming off the abx, and went on 2 weeks cephelaxin. Gradual improvement after completing antibiotics, and within about 3-4 weeks post abx we had a totally different kind--happy, pleasant, cooperative. We went in for another strep test after stomach pain, fever, and tantrums, and it was positive. Doc put us on 2 weeks cephalexin since it ended up working before. Went back in a week and a half post abx and got a negative strep test. Several days later, on vacation, he stopped eating and his behavior became strange--agitated, insisting on doing things after he was told not to(and in some cases, spanked, which we rarely do), and becoming crazily insistant that he needed to do them--almost like a compulsion. We called our pedi and they prescribed another 2 weeks cephalaxin, which we are on now. This is a learning curve for us and our doctor, who diagnosed the pandas, is a really smart guy and is constantly reading and staying up to date on what the research-approved PANDAS treatments are for us. So I think it will be a matter of time til we figure out the dosage and length of time for the abx. My question is, why is there such a lag between completing treatment and seeing improvement? I am hoping we see a similar pattern this time. What is the recovery that is taking place--and why would we get negative strep test but still have a spike in symptoms? Is it the antibodies still present in the brain? Is it a false negative? I also asked about what else could be done to promote brain recovery during this period. I give him vitamins with DHA. Are there other safe suggestions? Thanks in advance. I really want to understand what is going on as best I can so I can advocate for my little guy. As I am sure you understand, he has been through so much, and this is just the beginning. Meg

Hi all- thank you for all of the supportive responses from my earlier post this week. My 4 yo son was diagnosed with PANDAS this past December and we started seeing a big difference in behavior and emotions about 2-3 weeks after we finished up antibiotics. We had about 3 wonderful months, where everyone--teachers, parents of other kids, us, my family--noticed an amazing improvement. He was a different kid. Then, a few weeks ago, we saw a horrible fit come out of nowhere, and knew it was time for another strep test, which of course came back positive. We are glad we know how to recognize his symptoms now. We just finished antibiotics this time about a week ago. Behavior has been nowhere near as bad as it was several months ago prior to diagnosis, but this time we have seen defiance and emotionality again. His teacher could tell the difference as well, and I think we are still on the path to bouncing back from this attack. His biggest issue is that if he decides he doesn't want to do something, there is nothing that will convince him otherwise. So things have been a bit rough around here lately. Anyway, his preschool graduation was tonight. He has an amazing teacher who understands his condition and is very flexible and patient with him. She thinks he has made great progress this semester, and he will be with her again for pre-k next year. Today was a rough day for him--she told me not to have high expectations, that she thought there was a 50/50 chance he would cooperate tonight and do the program they practiced, and a 50/50 chance he would refuse. She said not to worry about it, that she would handle it and we should try to relax about whatever happened. But the rest of the afternoon was tough at home, and I just decided we should skip it. There will be so many people there--grandparents, family of the other kids--all people that are probably hoping for a perfect little preschool graduation program, and I was afraid we would ruin it. So I called his teacher, and she said of course she would love him to come, but that it was up to us. She understood that it would be stressful for us if things didn't go well with all those people there, most of whom would not understand what was going on with him. It was a hard decision, but I just decided we should skip it. He didn't seem to care one way or another, and his dad took him to a baseball game instead. I am sad to miss it. I know we really have another year of preschool (pre-k), and maybe next year we will be able to go. This is the kind of thing I love that seems like it should be a no-brainer. But things are always so hard. I see all these other little kids who seem to have no struggles and challenges, and my little guy can't catch much of a break. He is sweet and funny and loving, and has an amazing sense of humor. He is reading and it very smart. His ifne motor skills are horrible--the PANDAS has really done a number on any progress in that area. He really has come a long way since January. His teacher said to focus on all his progress and not to worry about it right now--that it's a marathon, not a sprint. But I am still sad tonight that we are missing this special event. We have a long road ahead. I just wish things weren't so hard. Thanks for listening to me tonight. Meg

We started our journey thinking we just had sensory integration issues, then arrived at the PANDAS diagnosis several months later. Our son is only 4, but it is amazing how much "Mr. Worm" (a weighted sock filled with rice) helps him sit still at school and rest at night. Easy, and his teacher loves it. She asked me to make another one for her to keep for other kids who have similar issues. He needs it most after a strep episode, but it helps him all the time...

Hi Vicki- Ah yes- the preschool stares! We know those well. I have had a number of parents come up to me and say they have noticed a big change in my son's behavior from when we first started (in the middle of our diagnosis--hellish) and then his behavior once we had completed treatment and had some time to heal. His teachers know all about his condition, and I have told a few of the mothers who are friendly, just so that people are informed and might better understand what he has been through. I don't want to excuse bad behavior, but the poor kid has been through the ringer, and the last thing we need is people judging him (or us!). We are doing one more year of pre-k, then off to kindergarten. I really appreciate your perspective. It's hard to say whether he was at an appropriate maturity level when PANDAS first struck--we think he may have had it since at least 3, maybe even before then. Terrible twos and PANDAS can seem a lot alike. He had started writing letters, etc--then suddenly stopped. He had his adenoids out last winter, and ended up in the hospital for 4 days on IV antibiotics for an infection that they think was due to an underlying bacterial infection. We had no clue at the time what that could have been--but of course now we know! So who knows how long the little guy has been going through this. I am glad we know what it is now, but to get hit again so fast is frustrating. Thanks again--Meg

Thanks so much for all of your supportive replies. I just can't say enough how much it means to me to have the support of people who understand what we are going through. We talked about preventive antibiotics but since he is allergic to penicillin, and doesn't seem to respond well to azithormycin, his pediatrician is very wary about putting him on long term antibiotics so young. We contacted Dr. K about making a visit up there, but so far I am pretty happy with our pediatrician and how much he knows about PANDAS and a variety of treatments. I realized that although I characterize this "episode" as less severe than the initial one, we really have had an increase of behavioral issues. More defiance, more hyperactivity, complete unwillingness to do any fine motor work. It isn't at the level it was in the fall, when we were clueless about all of this--then we had screaming crying temper tantrums, fight or flight response, biting, the works. Now we don't have any of that, so I am trying to remember how far we have come. He also developed a tic during the last episode that lasted quite awhile, and we didn't see that this time, hopefully because we caught it earlier. In terms of his "maturity" level before this all hit , I honestly can't say because he was probably 2-3. He is a spitfire by nature, so separating the terrible twos from this thing is almost impossible for me. we are heading back to the doctor for another strep test this week now that we are done with the antibiotics. i want to talk to his doctor about anything else we could be doing, and preventative steps to ward off the dreaded strep. I am looking forward to summer--no preschool, less germs. But so many years to go. It is so hard to see him struggle with his behavior and emotions, and I look ahead to all the years of school and can only hope things will get better. We had three months of much improved behavior, and now it is like two steps forward, one back. Sigh. Thanks again for the support. We need it! Meg

hi all- I was here several months ago (January) when we first got our PANDAS diagnosis. We went on 5 days of Azithromycin, tics increased, and finally went on 14 days of cephalexin. It took several weeks after we were done with the antibiotics, but we did see such an improvement in behavior, emotions, and even a big increase in willingness and ability to do fine motor activities (he is just 4, so his fine motor development has been a big struggle--now we know why). We had several great months of amazingly improved behaviors, people we barely knew and family we hadn't seen in months were really blown away. Unfortunately, about 3 weeks ago we had a huge tantrum at t-ball, and my husband and i knew it was time for a strep test. the test came back positive. i am very glad we caught the strep much earlier this time (we have no idea how long he was suffering before we learned of his diagnosis in December)--the behavior wasn't nearly as extreme as it had been before our diagnosis, and i was glad we knew the signs well enough this time to catch it. My question is for all of you who have been at this longer than we have. I went on a field trip with our preschool this morning, and realized once again how behind he is in terms of his maturity, attention span, behavior--he is still defiant, can't sit still, and has challenges with impulse control. I know a lot of his development with these things was affected during the months/years he was dealing with PANDAS and none of us knew--he is just 4, but I suspect he has been struggling this since at least 3. His teacher is wonderful and has been very patient helping him learn and improve on his social/emotional/behavioral issues. We have another year of preschool before we are going to start kindergarten, and I am thankful for that extra time. But I just feel so bad that he struggles so much with these things that come so easily for other children. much of what he struggles with now seems like adhd-like symptoms. However, when i spoke with a child psychologist, she said his early years did not really fit the pattern for adhd, and given what i told her about pandas, she said it seems likely it may be at the root of his behaviors. that said, will he improve over time, assuming we can stay on top of his strep and treat him promptly? we are not pursuing IVIG at this time after lengthy discussions with our pediatrician. given his improvement the last time after antibiotics, we are hopeful he will bounce back again. however, i foresee a nightmare with school in the future---could this be from the PANDAS--for having it for a length of time without us knowing? Will his little brain heal and let him learn how to listen, cooperate, and pay attention? what should we do?? Thanks for your help. He's such a smart little boy, and I am afraid no one will notice because his behavior is such an issue. Of course, it is miles better than it was 6 months ago before we knew what was going on, but compared to the rest of the class, we still have a long way to do. Thanks everyone. Meg

Hi all- My son is off his second round of antibiotics, testing negative for strep, and his pediatrician (who diagnosed the PANDAS) says that it all we can do for him, and to call if we notice a "behavioral spike", as that will be our sign he has strep. Well, in our house there is a behavior spike every couple of hours. He had a bad cold last weekend and his tic went away, only to return once he could breathe through his nose again. Consulted a child psychologist about pursuing treatment for our meltdowns, hyperactivity, and defiance that have been a mainstay around our house for the last few years (in retrospect, probably since he first started struggling with this). She had not heard of PANDAS but strongly encouraged us to get a second opinion, as she was concerned about starting therapy until we had a handle on the PANDAS. Long story short, I am tired of screwing around about this. Neither pediatrician around here thinks there's anything else to do, just sort of wished us luck if we wanted to go try some behavioral therapy. I have a 4 yr old who has constant fight or flight responses any time he feels threatened, defiance at an unbelievable level, hyperactivity, and significant fine motor problems--he has never even had a chance to learn to write his letters because he refuses to pick up a pencil. Now he has a tic, as a result of his recent strep infection. Likely we won't make it much longer at our current preschool, as I can't expect them to go through all this with us. I just discovered that Dr. K is covered in my insurance network. I have drafted an email to him summarizing our story. We are about 5 hrs away, but I would drive there tonight if I thought he could help us. My question is whether I should offer to make an appointment, or just let him decide how to proceed? I am afraid he will just tell us the antibiotics should have been enough, and then I am left with hanging again.

Thanks. We went to an ENT at Children's for my son's adnoidectomy last year--that is when he ended up with the retropheryngeal abscess. He was on amoxicylin after the surgery, and got horribly ill within 48 hrs while on the antibiotic--we ended up in the ER at Children's and were sent directly downtown to the ENT specialists. Dr. Shott was the ENT who recognized his rare infection and admitted him. She watched him like a hawk, and was adamant about keeping him on the IV antibiotics. No one ever really explained to us what had led to the infection, other than saying "he must have had something present prior to the surgery"...but once he was feeling better, we all assumed that was the end of it. I was impressed with them for that, but appreciate the advice that they aren't specialists on PANDAS. I think we will just take it one step at a time. I am getting so overwhelmed by all of the information (here and elsewhere). We will follow up with his pediatrician after we finish our antibiotics, and take it from there. I'm glad to know this resource is here.

Wow. Thank you for all of the information--I have to say that I am now completely and totally terrified based on what you have said.

Thanks for all the replies so far. In response to some of the questions, we are in Cincinnati, I didn't see any doctors close to us on the list here. Regarding the question about whether he had change in his behavior when he was on IV antiniotics from his abcess infection--to be honest it was a bit of a blur--he was so sick. I do remember that he suddenly became potty trained (after 2 yrs of knock down battles about the subject) right after we got him home from the hospital--like he suddenly was happy to do it. Other than that, I can't remember. This is his first strep diagnosis, and we were on Azythromicin (it says 200/5ml) for 5 days (1 tsp/day). Then, when I called back to report that the slight tic he had developed was becoming much more frequent once he finished the antibiotics, we were prescribed Cephalexin (250/5ml), two teaspoons two times a day for 14 days. We are in the middle of that now (he is 4 yrs old, about 40 lbs). I don't think he responded much better to the Azythromicin vs. Cephalaxin, we noticed an inital difference in behavior on the Azyhromicin but i think it was because his stomach felt much better. Fine motor improved on both, even more so on the Cephalaxin. So much to think about. I am driving myself crazy about this. I was "teacher's helper" today at preschool and it is so hard to see him struggling with his behavior, writing...with all these other little kids just sitting there without a care in the world. I want so badly for him to feel better, to be happy, to not have to struggle so much all the time. I truly hope we are on the right path here. I hope our doctor will continue to help us and know the right next steps. Thanks you all for taking the time to respond.

Hi all- I found this forum in my endless search for help and answers. My 4 yr old was just diagnosed by his pediatrician with PANDAS. I won't go into the whole long story, as I know we all have one. I brought him in for an appt because he had stomach cramps and was acting crazy--very agitated and hyper, and somehow his pedi knew to test him for strep (this is the first time anyone has tested him for that). After a positive strep test, he went on Azythromicin for 5 days. We saw some changes, but they soon waned once he was done with the antibiotics. About a week later, I noticed a little "tic" that had been going on for a few weeks (small mouth noise) suddenly exploded--every few minutes he would do it. I called the pedi back, as this was not a symptom we had talked about when we last saw him. He thought it was very suspicious, and ordered a heavy course of ceph antibiotics for 14 days. The biggest difference for us so far was a huge increase in fine motor abilities right after starting the antibiotics. Has anyone else experienced this? When he was much younger, he would color a bit and even learned to write "A", but it seemed like one day he just refused to do anything having to do with fine motor skills anymore. Needless to say, he never learned to cut, write, color, etc because he would not try it. But all of a sudden, he was painting, doing dot-to-dot, cutting (his skills are really rough but at least he wants to do it!). It was amazing! I have some questions I am hoping someone can help me with: 1) Is it possible that he has been suffering with this for a long time? His behavior over the last 2 yrs has been so challenging--anxiety, emotionality, aggression, defiance, hyperactivity--it never really fit one diagnosis, it was all over the place. Dramatic mood swings. Last February we had his adenoids out and he developed a really rare retropherangeal abcess infection which landed him the hospital for 5 days on iv antibiotics. They told us he had to have had some bacterial infection present before the surgery for it to happen, but he wasn't sick (as far as we knew--no fever, no symptoms). Now I am suspicious he had strep then as well. I know people say that these things come on "suddenly"--but once PANDAS is kicked into motion, without treatment, is it possible he would just keep on a roller coaster of behavioral and emotional symptoms? 2) Related to that, we have one week left on our ceph. antibiotic. I haven't seen a huge difference in his behavior, and no difference in his tic. What does this mean? Should I be seeing something? Are we stuck with these intense behaviors? My pediatrician has been very thoughtful so far, and I really appreciated him going right ahead with the second course of antibiotics when I called about the tic. He told me antibiotics are the treatment for PANDAS, and I know from the reading I have done that that is just one school of thought. This early into a diagnosis, is the best thing to do just to complete the antibiotics? Will the tic go away ever? Will the behavior improve? Sorry about all the questions, this is just so very hard on all of us and I need help figuring out what to do! Thank you in advance!