michele

Goodluck today. Most neurologists we have seen in OH won't treat PANDAS. I know of an immunologist in Toledo/Bowling Green that has treated PANDAS and worked with a neurologist from Toledo Dr. Nelson and Dr. Cameron. I was able to get our ped to write the prescription for the antibiotics longterm when I couldn't find any local Dr's to treat him. How old is your son? My son goes through these periods of waxing symptoms where his personality changes drastically and he acts crazy. Usually upping the antibiotics for a few weeks seem to calm the exacerbation down. We also see a psychiatrist that gives meds for the symptoms that don't go away inbetween epsiodes like the attention and hyperactivity and anxiety which is a huge factor and causes meltdowns for him. Her name is Dr. Rocker. She is in Akron though. We are near Bowling Green Ohio. We have seen a neurologist in the past for his tics. He did every test to get him nervous or frustrated. Didn't work. I appreciated the info and I might have to get in contact with you. We are all going to the Dr. today to get on some antibiotics. Even if they say we don't need them. I will keep you all posted you all have been great. Thanks Greg

Dr. Nevada Reed at Kids Link in Akron OH treats PANDAS She does not accept insurance.

Where in OH are you? We are in North Canton OH. I know of Dr. Nevada Reed at Kids Link in Akron who is great for PANDAS but does not take insurance. Contact me if you have any questions because we have seen alot of Dr's. for PANDAS. http://www.kidslinkohio.com/family/index.shtml

I gave my son clonidine for a few months. He was 7 and weighed about 55 lbs. He took .01 mg cut in half twice a day with 15 mg of Abilify. In the beginning he fell asleep so fast it was scary. I mean where ever he was he just layed down for a nap, a the pool, car etc. I looked into the patch but was told it could not be cut in half(don't know if the psychiatrist was right, since she had never used it) We then stopped it and added tenex and prozac and switched to risperdal. He still goes right to sleep at night but is not as tired during the day. We took it over the summer and I couldn't imagine him sitting through school without falling asleep. I would worry about it with the diabetes that he may be to out of it and not know his suger was off. My son has tics and takes the tenex. Your son's tics sound minor like my son's and are more noticeable to us because we watch for them. Maybe he doesn't need meds for them at all unless they are bothering him or interfering in his life. My son was butt picking and sniffing, licking and eye rolling and making noises, cracking fingers and toes. They change over time and are never more then a couple at a time. They are better now on tenex though. Good luck to you.

We do the social group with the psychologist and it has worked well. It is every other Sat for an hour. The Dr. groups the kids togeher by age and likeness. Most kids in my sons group are younger then 9 and mild on the spectrum. They have good verbal skills but poor communication skills if you will. They talk ablut issues that are relevant to these kids, bullying, not getting along with siblings or friends, sharing and taking turns. The Dr. Jay Berk travels the country discussing the importance of social skills to spectrum kids. I really like him. There is a paper we fill in every session. We rate him 1-10 and he rates himself as to how well he is doing. Then there is a space for concerns and things we'd like him to discuss. Finding the right Dr. is crucial. We have not been as lucky with an individual therapist for our family. I have been through 4 and had no success. I think one specialized in kids and OCD or ODD may be the key. I is hard to find on our insurance. http://www.jayberkphd.com/index.html Without the medicines or when they run out of his system, my son starts saying bad things. Like he talks about privates or doing something inappropriate. He gets loud and makes noises. This is the tourettes. The meds seem to ease the tics. Because of the meds, Andrew can go to school and blend in and nobody would ever know he has he tics or anxiey or inappropriate behaviors. I have to beg the school to do the social skills or communication with him because they see no issues. I guess that is a blessing.

Funny that the author of the article Dr. Murphy is the one who suggested my son go on tenex and prozac for the symptoms of ADHD and anxiety and tics and emotional liability. NIH and other PANDAs studies recommend SSRI's also for PANDAS treatment. I think the key is low doses and close observation by the Dr's. We see the psychiatrist once a month now. There is no way in the world cognitive therapy or ERP alone would have worked for my son during a severe exacerbation. This summer and fall when I had him to the psychologist every week and we did reinforcement charts and CBT there was no change in his behaviors even on meds and we had behaviorist come to the home too. It wasn't until his symptoms calmed down (wax and wane cycle)and we found the right meds that we saw improvements. Maybe if a kid was in a mild exacerbation CBT would work, but during a full flown exacerbation with moods and anger and tantrums there is no talking them down or reasoning. (we were fixing holes and dents in the walls he made with his feet and toys) We weren't dealing with OCD alone but comorbid symptoms that were irrational and explosive behaviors. We were desperate to get him help and were at the end of our ropes. I think people need to take into consideration that there are different degrees of behaviors in these PANDAS spectrum kids. I agree caution should always be used with meds and children. Most meds are not approved for the use in children. http://www.cidpusa.org/PANDAS.htm http://intramural.nimh.nih.gov/pdn/web.htm Does you child have OCD all the time now after PANDAS surfaced? Have you tried things like CBT and ERP therapies? Often they do not work during an exacerbation, but ERP has helped with residual OCD with my son's third exacerbation.

I seem to be the minority here but I will say they have helped us. My son has symptoms that are chronic though and not just with exposure to strep. His OCD and anxiety are always present and seldom is he symptom free. Also he has anger and social issues where he thinks people are mean to him. His attention is also short and he has tics. We have found a combo of risperdal for the anger and explosive behaviors, tenex for the tics and attention and prozac for the anxiety and compulsions has helped him lately. Finding the right medicines is not easy and just because the first few don't work or make them worse doesn't mean that there is not others out there that can help. PANDAS and spectrum kids are sensitive to meds and do not respond typically. We have worked for a couple years to find ones that work. Abilify helped in the beginning and then stopped over time. That is also not unusual according to psychiatrist we see. Sometimes you can revisit ones that have stopped working later and they may work again. Their bodies develop resistance to the medications. We have been on antibiotics for years and they don't improve his behaviors enough to allow him to be successful in daily life or for us to tolerate his behaviors. Seven years into PANDAS here and I can not say I have ever found a cure. Some newer posters think they have but over time with reexposure to illness we have found symptoms wax and wane and are saw toothed in exacerbation. We have not done IVIG or PEX though.

I feel your frustration. My son was recently sick Sat. Sun. and Mon. with fevers and sore throat. It seems his brain BBB gets inflaimed and after the illness he gets off the wall manic behaviors. Add to that the excitement of his b-day party Sat. and he is bonkers. The past two days have been bad here too. I have been working so closely with the psychiatrist and I felt we were making progress in Nov and early Dec. but then this setback and now it seems like he is unmedicated by his actions. When actually he is on Risperdal, tenex and prozac. I upped the prozac to 10 last week but have not noticed it yet. The risperdal is at 2 mg and the tenex at 2 mg a day also. What doses are you on? I noticed a big improvement when adding the tenex and prozac. He seemed less hyperfocused and less impulsive. Now it is back with the compulsions for webkinz and getting stuff. He says such mean stuff also to me. Does your son? He just seems impulsive, back cracking his toes and fingers and doesn't think before he shouts out bad things. Maybe those are tics. The tics are more verbal now then before. Plus he gets really fixated on weiners buts and privates. I should be embarrased to post it but that is my life. Do other people notice this with PANDAS boys? He also seems like he is agrivating his sisters and really showing the two year old some bad stuff. Try putting him on time out and I get a screaming backlash. It is so exhausting. Of course the school never sees a thing! I never hear anything but praise from them. I just can't image how one could go through this with no medication for these behaviors. We also added 500 mg of amoxicillin Sun. I am so depressed I started cymbalta last night for my fibromyalgia. I have to do something. I am turning into a short tempered mom who's hands and feet are swelled up and ache and has no energy.

We did see Dr. Murphy two years ago. She was not for longterm antibiotics at that time. She felt families should be tested when strep symptoms present and then treated with antibiotics when positive for strep in the household. I thought we would get antibiotics visiting from OH but we did not get any scripts other then OT. She does know more on PANDAS then anyone I have spoken to as she has studied it wih Sweedo from the beginning. Her office was very nice and kind to us. She spent over an hour talking to us, plus she had another Dr. meet with us. She was not for IVIG or PEX treatment. Now her opinions could have changed over the past two years. I know she moved from Gainsville to Tampa. She is also very big on TS and tic disorders. She did think kids with tics may need to be on medications like clonidine and prozac for anxiety and comorbid symptoms. I have been talking wih Dr. Geller's office and they told me his study on antibiotics has been put on hold for now but he is going forward with the genetic PANDAS study. It is 3-5 hrs and there is a $50 incentive. eamancuso@partners.org

Andrew got very agitated on the steroids. He was also on Abilify and clonidine as well. We did them for three weeks and he kept getting meaner. I had never seen him as angry or raged ( he kicked a hole in the wall. He does have anxiety and compulsions and tics so maybe they don't work as well in the chronic kids who always have symptoms and are on anti psych meds. He was also on antibiotics at the time but seemed to be in exacerbation too. His butt was really hurting from encopresis/ constipation too which may have led to the behaviors. He did improve after them though and his temper did get better also. Maybe it is the risperdal we changed to from abilify or maybe it was the steroids or a combo. We have not done anything more as far as treatments after them but the tenex, risperdal and prozac. We did not have the wow effect some people here have had on the steroids. I wish Dr. Latimer would have followed up and offered us something else after the steroids. She didn't even try the azith with us.

Today Andrew is 8 years old. Seven years ago he got strep and tics. I remember how scared I was when he started blinking and twitching even in his sleep, taking him to the Dr. and ER in the same day, going through CAT scan and EEG and blood work and so many Dr's that had no explanations. We have dealt with this disorder most of his life and still are searching for something or someone that may hold the answer. Sat. evening he started having sore throat and fever. I started him on 500 mg Amoxicillin yesterday morning. His fever is better this morning but sore throat remains. Right away Sat. night he started in with finger and toe cracking. He always gets tics with fevers. He is so calm and behaved while he is sick though. I pray this goes away fast and does not lead to another episode. He has been better lately with the tics and compulsions and moods. Darn winter weather and sickness. I pray 2010 will be a better year for us. 2009 and his 7th year was the hardest one yet. Michele

We are definately chronic PANDAS exacerbations that have waxed and waned and are sawtoothed over time. Over the years since age 1 when he had overnight chorea and blinking with a positive strep test and elevated antibodies and he is now turning 8 and things keep evolving. Things have gotten worse as it has progressed over time. The tics (tourettes)have come and gone and changed over time. We are now worse with the verbal tics and saying and doing inappropriate/bad things(talking about butts, weiners, boobs, poop and cussing). The initial episode was with strep but others times it has come on with shots, stress and illness in general mostly fevers. Some epiosodes are worse then others and last longer and involve more compulsions. He also has the everyday obsessions over getting things and fixed ideas. He has urinary and encopresis (poop issues are the worst!). He gets loud and impulsive and his attention span is short. He takes things wrong and gets mad easily and angers fast. He has coordination issues and handwriting delays and visual and gross motor delays. OT helps alot for the sensory and motor delays. Longterm antibiotics have never completely improved his behaviors. The only help we have found is meds for the symptoms and those have to be closely monitered and tweaked often. If he is in the height of a bad exacerbation therapy won't help at all and is a waiste of money. Until symptoms are calmed down and he can be reasoned with he just overreacts and gets distructive. Each episode seems to take about three months to improve regardless of antibiotics for us. Although last episode with the steroids he seemed to get worse behaviors before he got better. Right now Tenex and risperdal and prozac are helping alot with homelife and schoolwork. His attention is better and his anger/impulse seem improved. I just think it is something we will have to constantly battle with until a cure is found. I personally think PANDAS is on the autism spectrum/aspergers end. He is very smart and advanced in his research of his interests. Also the psychiatric component makes it hard to treat without medications because he has alot of anxiety. However, finding a Dr. to treat him effectively has been a struggle and nobody seems to have the interest or time or answers to follow him over time. Dr. T has said maybe he could help us get off some of the meds and get on stronger antibiotics longterm if we travel to NY or phone consult. We have had a lot of disappointment with Dr's even when traveling to FL or MD. I have lost count of how many we have seen maybe in the 20's. For now we are sticking with the local psychiatrist and the meds since they are helping. So far he has not had a bad exacerbation this winter. A minor one in the fall with the flu and he had some tics and moods but nothing like over the summer which was h e l l for our family. Transitions and being off schedule are tough on him and us. I now have respite care in place if we need it through our local MRDD and pathway for children.It gives our family a break where we can go do something without a meltdown for a few hours.

We get both tics and compulsive/anxiety behaviors. He has tested positive to strep sometimes and other times is neg but gets symptoms with reexposure to strep. His titers were elevated at one time. I wonder if over time PANDAS becomes a mood disorder that won't improve? We used to see the waxing and waning more clearly but now it seems to always present.

While we have never had large doses of antibiotics like Sammy, we did do the daily antibiotics 300 mg for a couple years Amoxicillin and Pen VK and Omnicef. We never saw great improvements while on them and he still had reoccurring episodes. Last Dec. we started adding multiple medications with a psychiatrist. Before that the neurologist had him on Abilify. We had upped it to 10 mg and it had stopped working after a year. The psychiatrist tried many stimulants and most of hem seemed to make him more hyper and impulsive. His attention span was also a concern to me because he couldn't stay on task at school and was falling behind. We did try Srattera when the concerta and adderall did not work. Strattera seemed to help but then he got bowel issues. Since he was on Omnicef and Strattera I don't know which was causing it but he was having diareah and his bottom got really raw. So we stopped them both. Then we went to Clonidine. It made him so lathargic but helped with the impulse. Since he also struggles with obsessive thoughts and anxiety we decided to try the tenex. It really has helped with focus and impulse and school work improved. Since his anxiety and OCD was still bad we added prozac to the tenex and also changed to Risperdal. Now he is on the three and is much better then before. I am hoping to get him off the risperdal but because he has bad meltdowns and anger I am scared to cut it out completely. You are right in that everybody responds differently and it is a game of trial and error to find the right meds and doses. I have talked to Dr. T and he said we can try the high dose Augmentin antibiotics. Maybe that is next if I do a phone consult or visit. He said he would help us to get him off the Rispedal. Also his encopresis is better now and so are the meltdowns that were a nightmare a few months ago. If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth. We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor? I'm not sure if your questions are directed at my post or at Pudgeo's, but I'll go ahead with our story, and trust Pudgeo will follow. We never did IVIG with our son . . . at least not as of yet. It's an option I suppose, but we're relatively new to the PANDAS thing and are attempting to move as carefully, advisedly and methodologically as we can. Because our son was diagnosed with OCD many years ago, prior to any suggestion of PANDAS, we've had a team of doctors -- pediatrician, psychiatrist, therapists, chiropractor -- on board for years. Most of them are skeptical about PANDAS but are supporting our insistence that we at least explore the possibility; the pediatrician has prescribed the abx (Augmentin, rather than Azithromycin). Concentration is not my son's only issue; it seems to be interwoven with the OCD, which currently manifests primarily as contamination fears and unwanted thoughts. The OCD has "shape-shifted" over the years, however, so it's always a moving target. We saw a dramatic decrease in his contamination fears within 2 days of beginning the Augmentin (875 mg. twice daily and then eventually 1,000 mg. Augmentin XR, twice daily), but there was a plateauing of improvement after about 10 days; then he seemed to slide backward, with the contamination fears slowly creeping back in, despite remaining on the abx. What has remained a consistent improvement, however, is his overall emotional state. Whereas the contamination issues used to drive him to major emotional breakdowns and hysterics at points prior to the abx, we do not see nearly as many meltdowns these days, and the ones we do see are significantly less dramatic and shorter in duration. We continued with the abx for a total of about 6 weeks (2, three-week periods which a short break in between while we tried to assess whether or not the abx were actually having an effect). He began taking the Intuniv (Tenex) almost exactly 3 weeks ago now, and we have seen a definite improvement in his ability to focus and concentrate; he remembers the order in which he needs to address tasks better, and his follow-through is much more efficient. All of this seems to help with the OCD because when he can focus on tasks and following through, there's less "room" for the unwanted OCD thoughts to take precedence in his mind. This seems to be similar to the support Straterra gave Sammy Maloney in his recovery. For supplements, he's taken probiotics during the abx courses but we're easing off of those now so that we don't wind up with a potential yeast problem. He takes a multivitamin once daily, and a D3 and NAC twice daily. We've been using melatonin at night because he was having trouble falling asleep, and that problem has been entirely eradicated (thank goodness) now; he sleeps like a baby! So, in short, while I could say that the Intuniv may be helping ease the meltdowns, also, because his focus is improved, I truly believe the abx has played a large part in that. I guess we'll have a better idea once he's been off the abx for a while; we're only on Day 2 post-abx at present! Crossed fingers!

My son can hold it togeher also in front of teachers and Dr's but falls apart when we are in a family setting. We started on pen vk in 2006(the red liquid made him hyper)as recommened on NIH website then tried amoxcil when it really didn't help much. After another episode while on antibioics that involved compulsive urination and rituals we went on Omnicef 2007. It did help for a time. Then he had a set back on it too and started having encopresis. I didn't know if they were connected so we stopped it daily in Aug. 2009 When he recently had a relapse I used Augmentin and it helped calm things but it sill took the usual eight weeks to pass the episode even on the antibitoics. We are not on the antibiotics daily but only during exacerbations for now. His symptoms are very saw toothed and we have never been able to find antibiotics as a cure for the symptoms but as a way to help slow the symptoms. We also had to treat yeast while on them. Maybe Azith or high doses of Augmentin would be different but we were never prescribed either. If we see Dr. T or do a phone consult he said he would prescribe them. Dr. Latimer did not prescribe them nor did T Murphy. I am worried about paying for another Dr. and not getting results. Right now he is stable but is on medications for anxiety, moods and anger and tics.

My son is seven and has TS with PANDAS and he uses potty language all the time. I believe they are tics. He talks about privates (butts, weiners and sex and has used cuss words too.) Part of his is impulse control too. He tends to act before thinking. I don't know when to wash out his mouth or when to ignore it. It is very tough because he is teaching my two year old alot of bad things. I have him on antipsych meds and antidepressants and tic meds and I don't see it going away. The meltdowns are better and the vocal noises he used to make are less but he still has impulse issues and says alot of mean things without thinking or caring about others feelings. I am not sure what to tell you to make them go away.

We traveled from OH to MD back in July. We did get the steroid burst. Maybe it was too much steroids for him because my son did get irritable and angry on them. Dr. L did call me back and suggested we quit it. She did suggest we do the NIH study on OCD. I was disapoointed that our report from our visit from her was never sent to us. Also she never prescribed any antibiotics which would have been nice since we all know how hard to get them it is. Maybe I can email her about the antibiotics. We have never been on zith or augmentin and either one of those would have been helpful. Now we have to consider traveling to see a different Dr. if we want to get them. Michele

Both of my kids are in OT and a trampoline and crash pads are awesome for their sensory issues and balance. We bought a 14ft trampoline at Sears that is fully enclosed with a net. It is very safe and hey have a blast. We just limit the number of kids on at a time because they can jump into one another and get hurt. Crashing is really good for their vestibular system. I also bought an indoor mini exercise tramp for the winter. They have a blast on them even the older kids. Michele

Do you have roaming pains? Just wondering cause my son does the involuntary toe curled under movements. It does seem like a compulsion or a stim. Kids that have anxiety do this. He also cracks his fingers against his face or on objects. Everything is equal one side then the other. My son has both tics and compulsions. He picks at his botom alot when he is seated at a chair or rubs it over the seat. he used to pick it while standing but I guess the seat is less noticeable. Since he is on 7.5 mg of prozac a daywith tenex 2mg and the repetitive movements seem better. He also is making verbal noises less often too. I have seen such improvements on the prozac. It is like 99 % better on behaviors and compulsions.

I just wached Dr. Nancy's show and unfortunately she spent most of the air time on Tiger Woods. Lauren and Dr. T were not menioned on the show today. If anyone hears of a different day and time she is airing them please post it here. Michele

I was curious to know how many here have seen Dr. T for the PANDAS treatment? Does he take insurance? I am so happy he is speaking out publicly and helping our PANDAS kiddos. It is about time a Dr. does go public with this. Where is Sweedo? She ought to be up there helping him too since this is her disorder she founded. It is very exciting for us to watch. I wish Dr. Nancy wouldn't be so dismissive about it all, but I guess she is staying neutral. Bonnie Hunt this Fri. with Beth and Sammy. How cool is this? What does Lauren's current treatment consist of? Does anyone know the amounts and type of meds she is currently taking? I know steroids and antibiotics but which ones and how much? Lauren and Lyn and Dr. T a big thank you. You did great. Michele

This media attention is great news for PANDAS sufferers and their families. Dr. T we appreciate you speaking out for our group. One important message is that PANDAS is a spectrum and not all cases look alike and the treatments differ also. Finding a great Dr. is the first obstacle for PANDAS families. A Dr. who is willing to try treatments and stick by these PANDAS kiddos and give them personal treatment. Just getting the medical community behind us would be a huge plus! A generalized statement such as antibiotics will take symptoms away is not always true nor is IVIG or PEX or steroids always going to help. Sammy was blessed to be cured from PANDAs with antibiotics. PANDAS needs more research and documentaion such as Dr. Cunningham has done and NIMH and Sweedo to get the right information out there. Many Dr's are still unwilling to help and it will take the NIMH to make an up to date statement and give some clear cut direction for them to follow. I look forward to your segment. It is an exciting time for PANDAS patients. I am sorry this happened to Lauren but admire them for putting themselves out there.

My son has had the compulsion to urinate over and over as soon as he comes out of the bathroom. We tested for urinary infections and all were negative. This summer we experienced the encopresis which is a soiling issue. It was the worst symptom yet for us. He would get backed up and then use his fingers to help it out. It became a compulsion. We had tests run and the BM was not any other problems like c dif. but behavioral. I was finding it everywhere. In registers, in the hampers, showers, door handles, switches, walls, dressers underpants. Luckily he has improved now and is regular wih the help of mirolax. He has had chewing compulsions on his shirts and sleeves, bottom picking through his pants over and over, or rubbing his bottom back and forth across the chairs, walking on his curled under toes or jumping on curled toes, cracking his knuckles, cracking his fingers against his face, his back, pressing his fingers against tables, desks and counters, the constant wanting of new toys and happy meals and fast food has been a battle since age three (I want... and when he ges it he wants ...), nose picking, repeating words, only eating certain foods and avoiding other foods, obsessions over people and likes, showers over and over, obsessions over jerseys, obsessions over movies, obsessions over books in a series, all the lights on in a room at a certain time, mental stuck OCD just not getting off of a subject or idea and discussing it over and over... I am sure there are more. He lives in constant anxiety over something. He also always wants the last piece of food or the biggest piece or the most in his cup an will always compare his to others. Michele

My son already had PANDAS symptoms from a positive strep infection that induced tics and behaviors at age 1 (or it could have been the 1 yr old vaccines he had the week prior to the strep which included pneumococal and varivax, but after that his five year old boosters and a flu vaccine set him over the edge. His urinary frequency and compulsions were constant after the shots like touching the ground and getting up on his curled under toes and stepping and meltdowns. Omnicef settled his symptoms down some but he was still ADHD and anxious since and has symptoms of high functioning autism/aspergers. His mercury levels were very high done by the DAN!. He also had alot of heavy metals and yeast in his blood labs and a chemical found in carpet fibers. I think the genetic predisposition for a neuro disorder was there but the shots and strep induced the rest. Needless to say I wonder what it would have been like if we had not done any more shots or had done them one at a time. Anyone here stop the shots or reduce the number of them given at one time? Michele

My son was on Omnicef longterm for two years. He was on 250mg and then 300 mg a day at ages5-7 from 37lbs to 60 lbs. It did help his urinary frequency and compulsions somewhat. I never saw him cured of PANDAS symptoms altogether because he still had saw toothed exacerbations come and go but not the full blown OCD that some here have described. He did start some encopresis this summer and I have stopped the daily Omnicef altogether for now to make sure his bowel issues are not related to the Omnicef. I also gave him Culturelle and Kefir and probiotics during the daily antibiotics. It worked better for us then Pen VK or Amoxcil. With those he still had more symptoms come through. We never did get a script for Azith which others here have found to work well. Good luck with it! Michele I don't remember about the dosage, but I just wanted to tell you that Omnicef was a very effective antibiotic for us-- really seemed to get to whatever strain of strep was lurking in my son's body. I remember cradling that Omnicef bottle and rushing home with it, knowing subconsciously that relief was on its way... this was before I knew about PANDAS. I just really developed tender feelings for Omnicef, if you know what I mean. Good luck, I hope it helps your family.