MMWG

Yes, we are on 400 mg 2 X daily, and the kid only weighs 55 lbs. I still think it is making him more emotional and his tics are the same if not worse. However, I am thinking I will talk to the doc about going more abx rather than the prescription for the other anxiety med. Don't know for sure.

Okay, so this is where I pause and realize how good of a pediatrician we really do have. I was assuming our doc had just upped our penicillin, though he did mention to me it was "peniciliin plus", containing an enzyme that would help deliver the medicine. I was reading Saving Sammy tonight and got to the chapter where they talked about Augmentin--how it is really pencillin plus clavulanic acid. I trotted to the fridge to see just what our "plus" was...and lo and behold, it is clavulanic acid. Therefore, he has him on Augmentin, it's just not called augmentin. It still may not work for him, right now he is soooooo emotional it is unreal. It breaks my heart to see him so upset over the smallest things, and it is driving my husband nuts. I'll stick it out til the prescription is gone and then check in with my report.

Yes, he was on prophylactic amoxicillin--now he's on amoxicillin + something else (an enzyme), much higher dose. I am wondering if there is anything swedo or murphy wrote that talks about which antibiotics are best to treat pandas exacerbations? My doc was all about the cephalexin when we thought he was allergic to penicillin, now we know he's not and so the doc really is a fan of the penicillin now, which is not helping. I think he's actually a bit worse, tic wise and emotionality wise. Sigh.

Thanks, I think I might write him a letter (he says I write great letters!) and ask if he would be willing to try a different antibiotic before we try a different anxiety med. I want to include some firm cites on trying augmentin or another--we had azith once with no avail. I am reading Saving Sammy right now and it is terrifying me.

I have read several summary posts or white papers saying that augmentin or cephalaxin are more effective to treat a pandas episode. we have traditionally been given cephalaxin because we thought we had a penicillin allergy. when we went for the preventative antibiotics, our doc was willing to do it but wanted to try penicillin since it is so narrow spectrum. now we are on a higher dose to treat an episode, but he kept us on the penicillin and didn't want to do the cephalaxin. it's not working. i don't want to be disrespectful, and he probably won't respond to "i saw on the parent board for pandas that penicillin doesn't work well" so I am hoping someone can send me to the cite for a few articles that will validate the use of the others instead of the penicillin. Thanks!

After 6 months of peaceful, non-pandas bliss, we started kindergarten and were thrown into a most horrible episode. We believe it was purely stress induced this time, and it was the first time we have seen every single clinical sign of pandas at once (our initial episode--that was caught--had most signs and a positive strep test. Since then, we have only had one positive strep test, but likely that is because we hop on it so fast). We had severe separation anxiety, fight or flight, ocd, tics, emotional lability, the whole enchilada. He was having night terrors too. The school situation was actually part of the issue--we usually assume full responsibility for school problems, but this place was so chaotic, and there was a little boy who was violent in the class, and he kept attacking our son (punching him in the face, kicking him in the stomach). We pulled him out of school and are now homeschooling him. I didn't want to, but I just had to get him out of there. The backslide was so fast and I didn't see the school situation improving anytime soon. Anyway, it has been 2 weeks since we left. His nightmares went away in a couple days after he stopped going, and his sleeping is much better. His separation anxiety is almost gone. He is still more anxious than normal when we are going someplace new and he doesn't know what to expect. We visited our pediatrician, who has been great about working with us to determine how to best manage his PANDAS. He was on preventative abx (penicillin--not my first choice but he was worried about anything broader causing resistance. Previously we have been on cephlaxin during an exacerbation, which usually works well). We had put him on Zoloft when he starting having the anxiety issues at school--and it did not help at all. So at our appt last week, we took him off the zoloft and instead the doc wanted to try a mega dose of penicillin to rule out any underlying bacterial reactions causing the episode (this is why i like him. he knows we can't tell just exactly what is going on, but he is willing to try different things and then takes my word for what seems to be working). I asked for cephalaxin, but he didn't want to give that. The abx don't seem to be making much of a difference--this is our 5th day and he seems the same. Tic is still there, particularly when he is concentrating on something. He is so emotional...we spent so long working with him so he didn't cry or have a tantrum over everything that did not go his way, and now it feels like we are back to square one. If the abx don't work, we have a prescription for a different type of anxiety medicine to fill next week. Then, if that doesn't help, he gave me a 3rd potential plan of putting him on a medicine that might help the tic and also apparently helps with adhd type symptoms (we have those too), but was hopeful we wouldn't need to try that one. Honestly, the tic is not a big issue for us--only we notice it, it's not bothersome really, but it bothers me because i know he is still in this episode. The doc promised me we would get him back to where he was this summer. It is so hard to watch the backslide, one step forward--two steps back. It seems surreal to me that he cannot be in school--but public school would be a nightmare for him, and our one shot at a smaller, private school turned out not to be so great either. I love teaching him at home, so that doesn't bother me, and he seems to be loving it. I just am sad he can't just go to school like other kids, and wish we could get a handle on how he backslid so fast. I guess I am just sad. Why does everything have to be so hard? Why do I have to be his teacher, his doctor (his doc is great, but I am the one doing all the reading of research articles and pointing things out and suggesting things), and his mommy...all I want to be is his mommy. I have been explaining pandas to everyone--school, parents, friends, nurses. I still don't think we have any clue how to get a handle on this. I feel like we are throwing him to the wolves everytime we have him do something that other people don't think twice about. I checked Saving Sammy out of the library today. I have been scared to read it, because I know it will make me cry. I feel like giving up, but then I know that I am truly the only one who can fight this fight for him. Thanks for listening.

We are going to send our request to homeschool to the superintendent on Tuesday. I know in Ohio they have 14 days to approve or deny. My question is--what do I do til then? We have been going half days to kindergarten at private school while we were trying to get him adjusted, but it is clear that there are multiple things happening that is going to make adjustment unlikely, at least not on any timeframe that won't be detrimental to his health. Do I have to keep sending him til we get the approval? I haven't talked to the school yet, but plan to on Tuesday. He has had a horrible backslide the last two weeks--a full blown PANDAS episode with all clinical symptoms, all brought on by the stress (strep test negative). It will take a long time to get him back to "normal", and another 14 days dealing with school is not a good idea. Any ideas?

Thank you so much! How wonderful to find someone who can help me think through this through the academic lens...it doesn't actually seem that daunting to me, seeing as teaching is what I do for a living, and given all my wonderful flexibility--it seems like a natural extension. I spent a few hours talking with his preschool teacher, who loves him dearly and knows him well, and was able to give him just what he needed to thrive at school. She said his level of cognitive ability and reasoning is very high above what she has seen in a child his age, and was the one who initially suggested teaching him at home, as she thought he would eat it up. He is a sponge, and is interested in so many things--Egypt, Ancient China, volcanos, science experiments, you name it. Unschooling seems up our alley, and I can think of tons of things along the traditional "school" subjects that fit into those topics, just to start...we need to find a group to do some things with, as he is such a social being, he will miss being around other kids. His fine motor ability is horrendous...for 2 yrs he refused to even pick up a pencil, but he is more than willing to practice with us, but not at school. Let me know if you have any favorite books or resources--I got a bunch from the library and a few from Amazon. We are going to set up a schoolroom space but will likely wander from there, just because we can . Having the university 2 minutes away will also be great--we have a zoology museum, art museum, etc--plus a whole education library, and tons of students willing to tutor in language, really anything... Glad to have found a kindred spirit!

Oh yes! I have the book "living with intensity", which I read before we figured out the PANDAS, and it still applies. You cannot imagine how happy it makes me to hear other well educated people use the words "asynchronous" and "overexcitabilities". I suspect somewhere intensity and those other things are intertwined with some of the PANDAS mystery... We are in Ohio, and I think at least half day kindergarten is required....

Hi all- We are pulling the plug on kindergarten, for reasons that are long and difficult...the school is progressive and flexible, but unfortunately chaotic...no routines, lots of issues going on there that are making our situation worse. We had a wonderful last year of preschool, and had reached a point this summer where no one would have any idea our little boy had PANDAS. He was diagnosed after an active strep infection a year and half ago, but we have stayed on top of it and kept him healthy. In the two weeks since school started, he has developed severe anxiety, separation anxiety, his tic has come back, he is having nightmares, he is showing signs of OCD for the first time. We started him on anxiety medicine. The school is willing to work with us but it is chaos everyday..and not just on our end. There is another little boy in his kindergarten class who is struggling and he has attacked our little boy three times in the last 3 days, the last time punching him in the face multiple times. Unfortunately, "alternative" is equalling "chaos" and the backslide we have seen in 2 weeks is frightening. I will not lose this child. We made the decision last night to homeschool him for awhile. I am a professor and both my husband and I have flexible schedules. We live 2 minutes from a college town. He is very advanced academically, but as I am sure you all understand, none of that matters if he cannot function at school. I hope this is the right decision for him. I need help getting started. What's my first step?

We're back, after a blissful summer of no problems and almost a blissful year before that where we were settled in preschool with a lovely, patient teacher and on top of anything that might set off our pandas symptoms. We started kindergarten a week ago, and it has been the longest week ever. Our kindergarten is progressive and small and flexible, and we tried to fill them in as best we could as to how pandas might impact our little boy at school. he adjusted well to preschool and only had a few times when he had to leave school, both when someone else was out with strep. This week has been ######. He was so happy and excited to go, and to see it all meltdown like this breaks my heart into a million pieces. He is boycotting everything--his fight or flight response is in overdrive, to the point where he just bolts whenever they ask him to do something he does not want to do (which is about everything--circle time, math, language arts, you name it). When they try to get him to do work, he meltsdown...and if they leave him be, he gets disruptive--walking around the room, making noise, etc. They asked me for advice all week and were willing to try whatever we suggested. We had some success last year by telling him he would have to go home if he could not follow the rules, so they tried that...and we ended up taking him home at noon that day. Finally by Friday they told us that he was trying hard but not making any progress, and with the rest of the kids settled, it is becoming more of a problem. They said he was not being naughty, but just could not settle himself down. The director of the school mentioned to me that he thought a lot of his behaviors looked like hypervigilance, which i had never thought of before. So I started thinking about anxiety. I had never thought our son had that, because he is very social, always up for new things and new people...I also never thought we fit the OCD profile of typical PANDAS. However, when the director mentioned it, I thought again....if anxiety looks different in a 6 yr old than an adult, OCD must as well... While I have spent years studying PANDAS, and also feel like I know my kid better than better than anyone, I had never used that particular lens to look at his reactions or behavior. Doing so allowed me to fill in what I think is a critical piece of this puzzle. We spent most of Friday afternoon at the pediatrician's office, and are returning Monday morning for a follow up. See if my logic makes sense.... 1) Separation anxiety. Our son is very social and loves new people and things, but I can very much see him clinging to the familiar. He has not let me out of his sight much since we left school Friday. T 2) Fight or flight behaviors (clearly evidenced last week-When he feels threatened, he flees. 3) Finally-- obsessive-compulsiveness (triggered initially by a documented strep infection, but recurrent whenever the immune system perceives attack). I had always dismissed this indicator as not relevant to--we have never seen anything I associated with OCD--no repetitive behaviors or obsessive thoughts. Yet when hypervigilance was mentioned, and I wondered how anxiety looks in a 6 yr old, I decided to look more deeply into how OCD looks in a 6 yr old. Here is what I found: Obsessive thoughts often include constant asking for external reassurance (did i have a good report? are you happy with me? are you mad at me? did i have a bad report?). They also include "fantastical thinking"--thinking up stories that are often dramatic that help them reduce their anxiety that things are not going their way and they have no control. Both of these are very present in our little one. Compulsive behavior, though most commonly associated with things like checking and hand washing, etc--is actually defined as "a behavior that the child feels he must do, despite the consequence". If we use this lens to think of many of the things we know our son does when anxious--such as making one last disruptive noise after he has been asked to stop, refusing to engage with the group although he knows he is supposed to, touching something one last time after he has been told no more--this seems to fit to a tee. If you try to prevent them from completing the behavior (such as keeping him from fleeing the room, or making him join the group when he resists), they become very agitated and out of control, as the compulsive behavior is their way of decreasing their anxiety (just like hand washing would be). Could refusal to do what is uncomfortable for him or what he is unsure about be a compulsion? And if you try to make him, he meltsdown? Is rigid refusal an anxiety coping mechanism of some type? We were thinking it was defiance, but across the board everyone has said it doesn't seem to be naughty or intentionally defiant in any way. Is strong willed refusal to comply an anxiety related behavior in a 6 yr old with pandas under stress? I am not completely sure, but if I am right, this provides a totally new insight as to why he is struggling so much. It also explains why he could not tell us why he was so resistant to doing what he was asked. I need to talk to our pediatrician tomorrow about this and see if he agrees with my assessment. We communicated with him by phone Friday, and he immediately started us on anxiety medicine. However, he was out of town until Monday, and we need to see him face to face. As I mentioned, I am not against helping him with medicine--but this is all very, very complex and very difficult to unwind. But given all the ways I could see the anxiety playing into this last week, I readily agreed to try it. However, it is only day 2, and it will be awhile before we know if it's going to be helpful, and I want to watch him closely for side effects. In terms of school, we are not sure exactly how to proceed. The difference between an anxiety disorder and/or OCD in a non-PANDAS child and a PANDAS child is that if we can manage the amount of stress he is feeling (and keep him healthy), the OCD-type issues, fight or flight, etc should (and I emphasize should) also be managed. Given how well he did in preschool, we do know that if he is comfortable, happy, and feels safe, those things go below ground and he can function fairly well as long as he isn't exposed to illness. He will never be a mellow, calm child--but over the last few years we were able to see huge improvements as his comfort with the school and teacher grew. However, the expectations in preschool are fairly low, and this is "real" school now. I am sure the increased expectations to do the things that are anxiety provoking and difficult for him, along with the newness and change, will make this a much more difficult transition. Hopefully the medication will help at least a bit, but that remains to be seen. It is very difficult to see our happy, smart, creative, wonderful little boy do such a complete 180 when he is at school. We want very much for this to work, and for him to be able to experience all of the wonderful things the school has to offer. Academically, he has no limitations whatsoever--with the exception of his fine motor difficulties. Our goal is to figure out whether he can get to a place where he can do what is expected and asked of him in school, as we completely understand that to be there, he needs to be able to do those things. We could homeschool him, but if we can find a way to have him in school, we want to try as hard as possible to do that. Where do we go from here? Has anyone tried to gradually introduce school? We have seen all these behaviors he has shown this week before--always when he has started a new school, but other times as well, usually to a less intense degree. This weekend he is clearly suffering from intense anxiety (now that I know this, I suppose I will see it everywhere)...he won't let me out of his sight in public, and woke up yesterday at 5:30 worried about going to school. When I told him it was the weekend, he said "I tried really hard, but I had a bad report all week...I just get bad reports in this school." We have tried not to talk about it this weekend....but another week is beginning. Any insight and advice would be greatly appreciated. Sorry this is not well written...I am so tired and the road is so long.

Well, I have just popped back on here today after a year or so break, so I guess this applies to me! All the issues mentioned are true for us. My son (now 5) has not had strep in a year, and we have seen profound improvements in his behavior and emotions. We have been on abx once this year when he was exposed and showing behaviors, even when his strep test was negative, and back to the pedi a few times just to be sure when we were having a difficult time with behavior. For me, I felt like I was attributing everything to PANDAS when I spent too much time on the board, when some of our issues were due to that and others were not. I do want to say that figuring out so early what we were dealing with has been huge for us. I was worried I wouldn't know when he was hit with strep, but I definitely did. I know the signs to look for now, as does his teacher, so we are all vigilant. His doctor is also helpful in talking me through what may be a strep reaction (such as a strange thing I thought was a bladder infection, which he connected to pandas, and defiant behavior, which probably wasn't!). I try not to cry wolf too often but I am always safe rather than sorry in getting him checked and pull him out of school whenever strep is going around. I do want to give hope to other people out there--we feel like his condition is largely under control and although he is still a strong willed, hyper little boy, the extreme behaviors, tics, and emotionality are largely absent unless he is exposed. Our pedi told us he treated another patient with "our protocol" to much success, and a woman I work with contacted me when her stepson started showing similar symptoms after a positive strep test. so i think we are trailblazers in a way, and it no longer (at least right now) monopolizes our whole life. We don't have our son on preventative abx because our pedi is against them given his young age and other abx allergies, but he is good about putting us on them when we are seeing symptoms. I think early detection and management is a huge key to progress on this disorder!

Our PANDAS is currently fairly under control. DS just turned 5, and has had 2 bouts with strep this year which were handled with 3 weeks of antibiotics each. I love our pediatrician, and have no desire to go through the medical maze to find anyone else. However. DS has always had very bad constipation--at his worst he was going 1 1/2 weeks with no activity, if you get my drift. His pediatrician put him on daily miralax over 2 yrs ago. it works well for him, as long as he gets it everyday. if we miss even one dose, the kid is in major pain (as he was yesterday). I asked at his last appointment if there might be something else we could do for his stomach, or whether he might have some type of food intolerance or sensitivity that we might want to look into, but the pediatrician kind of blew it off. I know there is a great holistic/integrative medicine doc close by that many people I know have gone to and love. He has addressed other children's stomach issues, and he has seen two friends of mine and told both of them to go gluten free (i get the sense that is his big thing). i have no idea if he knows about PANDAS, but I believe his son is autistic so I would guess he is up on DAN protocol and all of that. I have no idea what stomach issues might be going on. The constipation has been there since birth, so I am not sure if it has any relation whatsoever to his PANDAS,though I know anything that makes him feel poorly triggers behavior issues for us, so I am sure it can't be helping. My question is--can I just go to the integrative doc and have him look into the stomach issues? I am not really interested in whether he disagrees about PANDAS, or any alternative to our current PANDAS treatment, and when the kid has strep, we are putting him on antibiotics, period. I would let him know about hsi condition, but I really want his help in the stomach area, not the PANDAS area. Would this fly? Also, what kind of tests can they do for food sensitivity or intolerances? Do they have to take blood? Is it worth it?

Thanks everyone!

There isn't a reason he isn't on probiotics regularly, other than my head spinning about what to have him on and what not to...he is on vitamins, and fish oil/DHA. I gave the Lifeway Kefir a try and figured we would keep up with it, but he hasn't had it in a couple weeks. Would that alone be sufficient for the yeast, if he had it everyday? I have heard mixed things about Culturelle...

My ds (age 5) was diagnosed with PANDAS last December. He has had strep twice in the past year, the last time being in April. He is not on daily abx but was on them for 3 weeks with his first post-diagnosis strep and then 4 weeks with his second bout. He had a negative strep test this summer but went on abx as a precaution because we saw his slight tic return. He has had chronic constipation since he was a baby, and takes miralax everyday for that. Anyway, I have always wondered whether he may have sensitivity to certain foods or dyes because of his constipation issues, and now with all the abx he has had this year, I am concerned about yeast. I picked up a book at the bookstore tonight about undetected allergies in children, and read that redness around the anus can be a sign of yeast infection. We definitely have that, and have for awhile. He is not on any regular probiotics, but I have tried the Kefir probiotics and he seemed to do well with those. How else can I fight the yeast? I have a feeling our pediatrician won't think much about my concerns--he has been great about the PANDAS, and we like him, but I raised the allergy issue once and he blew it off. There is a homeopathic doc in our area that deals with these things, but he is anti- antibiotics for the most part, and I am concerned about taking my son to him, as he would likely not agree with how our pediatrician is treating his PANDAS....the last thing i need right now is two docs disagreeing on how to treat my child. What can I be doing at home to combat the potential yeast issue???

My doc brought this up--he is concerned because my son is allergic to penicillin, and his strep doesn't tend to respond to azithro, so he is hesitant to keep him on ceph full time since we don't have that many choices left, and because my son is so young. we'll see what happens--he is getting strep so often that soon we will have to do something differently.

He's just in preschool--only one classroom. The teacher is awesome--her daughter almost died of rheumatic fever many years ago, so she is like the Terminator about keeping kids out of school if they have been exposed to strep. She warned everyone at parents' night that we could not have strep in the school. Next year I hope to put him in our private school, because it's awesome, but also because the class size is tiny. Sigh. No PANDAS symptoms per se, other than joint/leg pain. Hoping it is not strep, but knowing our luck, it probably is....

Leg pain is my son's main strep symptom, that and stomach pain. Otherwise, we wouldn't know he had it.

He has spiked a fever of 103! Says he feels fine, and has been wonderful in terms of his behavior--almost amazingly good natured. The only things he mentioned were a belly ache and then said his legs hurt at dinner--which are his classic strep symptoms. Slept for 4 hrs this afternoon. We had strep twice last spring, and then once preschool got out, we were totally healthy all summer. We have only been back in pre-K for 2 weeks, and now he is sick again! How can I protect my baby???? I want to put him in a bubble!!! Off to the pediatrician for yet ANOTHER strep test on Monday. Poor thing--he hates strep tests.

Okay, I just posted a reply but it disappeared. So here it goes again! Please try not to worry. I am not an expert on Lyme, so I will let the Lyme experts help you with the specifics. However, as a mom, I wanted to make sure to reply. I actually think this is GOOD news. You worked hard to seek medical help, and now they have some information about why you aren't feeling well. If it is Lyme, that is treatable. Yes, it causes a lot of problems, but you are already experiencing those--pain, neurological symptoms, etc--having someone figure out WHY is a positive development. If you felt fine, and then someone figured out you had Lyme, or something else, that would be troubling. But you know you aren't feeling well, and haven't been for awhile. You have fought to have someone listen and help you--and I think you should view this information as a sign you were right. If this doc isn't an expert in Lyme, or whatever they see signs of, you will now know what you are dealing with and can find the right specialist. I think this means there are answers ahead for you. Try to relax-don't be scared. Distract yourself as best you can, and as it gets closer to the end of the work day, I personally would have your mom call the doctor back if you haven't heard. You are entitled to know what is going on, and it is not good for your health to be stressed out about what they have found. Hang in there and let us know.-Meg

o my Lord....i just want to cry...how many times ds has complained of a sore neck(off and on for as long as i can remember...i always asked if he felt ok other wise and he would say yes.. what did i do????? we've tried neck pillows...chiropractors...as some of the times he wasn't in an episode.... CR#P!!!! Fixit- I didn't mean to upset you! My understanding of the retropheryngeal abscess infection was it had a very quick ramp up time--I think more like days. It usually happens with a complication ENT surgery, or some sort of injury to the head/neck area, which is why I thought the IVIG might be a different deal, but given the scariness of stiff neck, I wanted to mention our experience. If your ds has had a sore neck off and on for an extended period of time, I don't think it would be the same situation as we had--but probably worth checking out. Ours happened 2 days after surgery, and got bad very quickly. I think he must have had undiagnosed strep before his surgery. Anyway, I think it was the combination of recent surgery plus the stiff neck that set off alarm bells.

Not to be alarmist, but my son had his adenoids out last year and within 2 days had a stiff neck and fever. We weren't sure what to make of it, but finally called the ENT on call and were told to take him directly to the emergency room. After xrays and being rushed downtown to the main hospital, he was admitted with a retropheryngeal abscess bacterial infection and was on IV antibiotics for 4 days. they told me it was because he must have had a unknown bacterial infection when he had the surgery (strep?). If we hadn't taken him in when we did, the infection would have created deep abscesses in his neck that would have required surgery, and if you don't catch it at that point, it can go deeper and create life-threatening sepsis. I am sure it is different with IVIG, since it is not really a surgery per se (right?) but I don't think you want to wait around with a stiff neck. They told us that was a danger sign of infection.

Thanks for the input. We have tested the whole family (which is just my husband and I) and we both had negative tests. I do love our pediatrician. I have spoken to him about preventive antibiotics, and he is concerned about resistance. However, so far I have found him very responsive to adjusting and adapting treatment as we figure this thing out. He was actually at a conference with Swedo once when we had a positive test, and when we saw him for a follow up we discussed the latest research. He spends a lot of time talking with me about it, and when I was looking into other docs we might see for more progressive treatments, he was great about calling me and talking about pros and cons considering our son's age, allergy to penicillin, and lack of responsiveness to azithromycin for strep. I do worry about how often he seems to contract strep (twice since December), and the 4-6 week time window it seems to take our son to bounce back after he is treated for strep. I have talked with him about ways to be more proactive in protecting him, and that is part of the reason I am so pleased he chose to prescribe the abx even without a positive test this time. I trust him, and also think he will be open minded about what type of treatment will work best for our case, and is great about talking through how to weigh the benefits and drawbacks of different choices. When we were thinking of going elsewhere to a doc with more specific PANDAS experience, he was willing to order any tests we needed, but also took several hours out of his day to do some asking around about the docs we were considering (we didn't even ask him to do this, but he did), and then called me and talked with me for over an hour about options. He talked about the use of IVIG and other treatments that might be recommended by other docs, and walked me through the published research, the school of thought about why it might potentially work for PANDAS but also the concerns that might exist, discussed with me the studies done at NIMH and offered to make some calls to see if there were any new studies we might be able to participate in. The bottom line is that I feel he is above all concerned about what is best for my son. He has on several occasions heard my concerns, thought about them, and changed or extended our course of treatment. He is open minded, and I feel like he is open to the idea that he doesn't know everything about this yet (who does!) but wants to understand it as well as he can--both in general, and how it presents and should be treated in our case. So yes, I do think we might need to go the route of preventive antibiotics sometime soon. We are all learning as we go here, and I feel so grateful he diagnosed my son when he did.

When our son was first diagnosed and treated with abx for a positive strep infection, we saw an immediate (within 48 hrs) change in his willingness to write, color, do mazes, work on his letters, etc. He is only 4, but after learning to write "A" at age 2, he had pretty much refused to pick up a pencil for over 2 yrs--hated coloring, couldn't use scissors, etc. We had him in OT to try to help him learn, but he wouldn't do it. Then, within 48 hrs of being on antibiotics for the first time, the kid started pulling out coloring books, activity books, writing his letters, you name it. He wanted to paint, glue, anything he could get his hands on. He spent an hour doing it one day, and the next day he pulled out his scissors and spent another hour cutting anything I would give him---coupons, ribbons, paper. I almost videotaped it, it was so astounding. After 2 years of refusing, it was the only proof I needed that we were on the right track with this. He isn't quite as gung ho about it anymore, because I think he realizes it is hard for him, or used to be. But it was profound, and sudden. So yes, I think it's possible that is what you are seeing.