Kimflow

I have the white paper....just went and googled it and downloaded it. I need something that says the 1 time a week antibiotic is not enough...that it needs to be administered for more than a 5 day z pack. Does that exist? Long story but I can't get in to McCabe until May 15th. Then this afternoon they called back to say that I can see a Dr. Freeman. I said do they know PANDAS. The receptionist says that she will schedule a meet and greet call and I can go from there because the goal is antibiotics. At any rate, I am also finding the olive leaf extract and x lear spray. Thank you for all those suggestions. So I look up the doctor and it turns out he is a SHE and would you believe this....I just sat in a weekend seminar with her not 10 days ago. I call that a Godwink or higher power wink, maybe. And Kiera, my son has autism and I see now he was having PANDAS activations every winter but this winter, about Feb. all his OCD stuff coincided plus a bunch of sensory issues blew up. I knew something was different. Rapid tested just to rule out and he turned up positive. Now he has choreiform movements. I'll keep you all posted. It is just like I tell my daughter....things that feel horrible right now will eventually not feel so horrible. It just may take a while to survive through. Thanks for all of your support, everyone. I am blessed to find this board. Kim

Nancy, Thanks for writing. Did those blooddraws on Sat. and this Thursday I have DAN appt. to review labs. Maybe I could convince him but he is pretty set in his ways. I guess I go in for another culture with him today. They'll soon think I am wacko. The first pediatrician was no help at all. I wondered if her son was in a similar situation whether she would have been so cavalier. Doc in the box is another option. Maybe they might actually be more informed about PANDAS. Trying to wolf down some breakfast and will call to see if I can get in to get him reswabbed. I think it is time to invest in some of those over the counter rapid strep test kits. Kim

So my son has been off antibiotics for 7 days. It is all coming back and now we have what we didn't have before which is the choreiform movements. His lips are a mess again and I think this has to do wtih mouth breathing which by the way, his lips looked so good while on antibiotics. So what I am thinking is that the mouth breathing reflects strep swollen tonsils and adenoids. I feel like his mouth even smelled a little bit like strep this morning. I went in for repeat cultureon Monday on the 5th day off antiobitic and it came back negative. Toying with the thought of going back for throat culture today again. No one will give me the daily antibiotics. Only maintenance 1 time a week from DAN doctor. I have to send him back to school tomorrow and I don't know how I will do it. He has already had several meltdowns over things I have said and I think carefully what I say and know how to bring him down from anxiety/ocd issue. If I don't send him to school, he'll lose the aide that knows him so well. I tried to call Deborah McCabe but can't get in there until May. And I have to leave 100 dollar deposit to hold the appt. Latimer I have appt. August 15th. I am both of their cancellation lists. I emailed Dr. K asking for him to let me know if he could help me. I just called the office. They are not in until 1030 or 3 pm, the answering service said. I just feel so stuck and don't know which way to turn. I know you all can't do anything but just needed a vent. maybe it would help me focus myself. Kim

Did your son receive Nitrous oxide during the surgery for induction? Nitrous oxide is contraindicated in kids with autism as it can cause a regression. I believe it has to do with MTHFR mutation and depletion of B12 but honestly my brain is fried within the past 2 weeks of learning my son has PANDAS. I just know I had all the research papers for hte oral surgeon that took out my daughter's 8 baby teeth. She has similar genes and I wasn't willing to risk it even though my daughter is neurotypical. The surgeon said he was aware of all the research and he had no problem giving her sevoflurane for induction instead. Kim Here is something I found with a quick search. You can look for more. Read about the potential adverse effect of nitrous oxide on ASD children with the MTHFR gene deletion and/or deficiency of Vitamin B-12 (cobalamin). "Severe Methylenetetrahydrofolate Reductase Deficiency, Methionine Synthase, and Nitrous Oxide — A Cautionary Tale" by Richard W. Erbe, M.D., and Robbert J. Salis, M.D., New England Journal of Medicine, Volume 349:5-6 July 3, 2003 Number 1. "Adverse Effect of Nitrous Oxide in a Child with 5,10-Methylenetetrahydrofolate Reductase Deficiency" by Rebecca R. Selzer, Ph.D., David S. Rosenblatt, M.D., Renata Laxova, M.D., and Kirk Hogan, M.D., J.D., New England Journal of Medicine, 349;1, July 3, 2003. A letter in Arch Dis Child 2001;85:510 (December) from Isabel Smith, Clinical Audit Department, Great Ormond Street Hospital in London states: "Nitrous oxide inactivates cobalamin, the active derivative of vitamin B12 and essential cofactor for the transfer of the methyl group from methyltetrahydrofolate to homocysteine to form methionine. For subjects with good body stores of cobalamin this effect is unimportant, but no-one using this agent should remain unaware of the potentially devastating complications in the nervous system of using nitrous oxide in subjects who are of borderline or deficient vitamin B12 status. Onset of subacute combined degeneration affecting the brain and spinal cord is a well documented event when individuals with low body stores of cobalamin are exposed to nitrous oxide."

IS Dr. K (Dr. Kriwinsky)? I saw him on a video with a little boy who had IVIG. many thanks for all the suggestions. I guess it is phone consult with another doctor or Deborah McCabe. I will start to work on this tomorrow. Kim

Hi, I need help figuring this out. Just sat at the breakfast table with my husband having the same discussion. Right now my son saw some improvement with antibiotics but they would only prescribe a z pack. I did get DAN doctor to prescribe Zithr. 250 mg 1 time a week. I did tell him that I read that many say it takes months of antibiotics to clear a PANDAS strep. The pediatrician is useless and just handed me 3 hospital names and said call for a specialist. So I called Dr. Latimer as she is 1 hour away and this will work great if he gets IVIG. But I can't get in there until August 15,. I have the name of Deborah McCabe who I got off of this Board and she is in Washington DC. She is PA....maybe she can help with long term antiobitics for my son in the interim until I get in to Latimer. Anyone have any experiences with Ms. McCabe. Or should I just drive my son by myself to Conn. to see Dr. B. I don't even know what his wait list is like. I just don't want to get started on one track and then come back to Latimer since she is closer and have her say....why did you do that? Still I am sitting here and once I draw the bloodwork today, I will be stuck until August which is too long. I will have consult with DAN on Friday to go over bloodwork and see where he wants to go next. I know for a fact, he has already asked me what insurance we have in case my son needs IVIG. Yet, I feel like even though he has experience treating PANDAS kids, he doesn't know it like Latimer or the other top ones do. But maybe he could start pursuing the insurance company for IVIG now. Any thoughts for those of you who have been through this already? If it sounds like I am all over the place, I am. Just trying to make best decision for my son. Thanks, Kim

thanks I am writing this all down. We go today for the bloodwork and I forgot that I wrote this post until now...I am just living day to day right now......but I can always take him back to get add on's done. I will just have to. I hope the blood draw is not like the blood draws when he was a small child. The pediatrician is no help at all, the DAN doctor is tough to steer a certain way, so it may have to wait until I get to next practitioner like Dr. Latimer in August(yes, Iam realizing this is too long) or Deborah McCabe if I can see her earlier. Or I will end up driving to Dr. B or the Dr. T I think in New Jersey. Kim

yes, he has autism. I just spent 20 minutes of the morning after we just woke up...helping him get through two different rituals. Head up/down and then back to bed, he screamed DOWN and wanted me to push his body down into the bed. Then when I did he said ALL DONE. This is a rollercoaster even worse than autism Literally, we are cycling between a good and bad day for 4 days in a row. Wed. and Friday the PANDAS stuff wasn't so bad and I got hopeful. Thursday adn so far today, the rituals started as soon as he woke. yes, I wrote down the name of Deborah McCabe who is near me in Wash. DC. Maybe she can help me in the interim? Does anyone have any comments? If not, I would have to drive to New Jersey or Conn. by myself with my son. Maybe that is what I have to do even if it is just to get daily zithromax as he is definitely flaring off of it. today we go to get his blooddrawn. Kim

So my son had strep throat, huge flare in PANDAS symptoms.....actually the whole mess has clued me in that he has reacted to strep many winters in a row with increased anxiety/OCD etc. Now I know what was happening. When he got strep throat, then we had the big flare. He was on a z pack 250 mg (5 days) during which some of his symptoms got better.....the major one was reduction in the anxiety related to motor function...ie. is you said sit down, then he would have to have you say it again and "help"him sit down. 5 days after hte z pack was done, two doctors told me it was okay to reculture him. He tested negative. We still have the motor ocd/anxiety, choreiform movements.some degree of separation anxiety. In fact, the motor related rituals/ocd is more panicked now than it was on Antibiotics. I called DAN doctor and he would only give me prophylactic zithro..250 mg 1 time a week. Then I went on Stephanie's website and read these things that concern me but what do I do if I can't get a doctor to give me a month's worth fo zithromycin.???? I read that they say 3 whole weeks after strep treatment, you should get culture. I read that prophylactic means 1 time a day......but I swear I also read 1 dose a week. I am at a loss of what to do until I see DR. Latimer in August. Does she prescribe longer duration antiobitics. My only other thought is to start having him take OLive Leaf and xlear spray up his nose. Please help me iwth any ideas. Comments. Thanks, Kim

Stephanie, The DAN doctor from Florida sent the homeopathy to me. I stopped it. I couldn't tell whether it was causing issues or not. Would you share with me the name of the doctor who is doing your homeopathy? He is also sending me Immunovir...is that a dud too? It is supposed to be an immunomodulator and antiviral (I guess less viral exacerbations of PANDAS symptoms). Yes, I am beside myself as is my husband and my son's sister. Since we got him "back", we have always felt this would be our worst nightmare and now it has happened. But I just keep trying to say it could always be worse. We haven't gone back 8 years, only about 3 as far as sensory issues, OCD, etc. and we have added in some choreiform like movements/tics. It coudl always be worse...I am just glad he has retained what language he does have. I will post a longer update on my son but the short version is: the throat culture taken 5 days off of zpack came back negative. The tongue protrusion tic left about 1st day on antibiotics. he still has some eye squinting, alot of uncontrollable head/neck/truncal movements but now I question if some of them have morphed into OCD type movement/behaviors. He has a tendency to attach his anxiety to different words/memories. Why would uncontrollable movements be any different? It is strange as much of his OCD/Anxiety centers around motor movements as well as comments on what he is doing/asking him to do something causes OCD/anxiety responses/behaviors. It has been this way for so many winters but I never knew. It was just the actual "catching" of strep throat that has caused this huge exacerbation and clued me in. He gets so very upset as I am trying to help him through some of the rituals. Yesterday, had to pull over twice as he had to have me "help" him complete a motor movement...he is so upset and crying during it. He also has a phrase he says probably 20 times or more a day now that we all have memorized. It makes little sense and he says it out loud out of the blue. I suppose this could be intrusive thought. My son can't tell me. He is on prophylactic zith now (doctor gave me 1 250 mg a week of Zithromycin....I tried for longer duration but only got the 1Xweek) until I figure this out. bloodwork tomorrow. Latimer visit in August. Not sure if I should go to some other doctor sooner but Dr. Latimer is only about an hour away. Nice to have a doctor close to see and if necessary, receive treatment. Kim

What is a "dental flare". We are new to the PANDAS world. I noticed that 7 weeks after another perfect visit to the dentist, he now has a black spot that has appeared on the side of his back molar. How could this be? Never a cavity in 9 years! I swear this has something to do the zithromycin that we just had him on....it is almost like a huge pit has been made in the side of his tooth. Anyone have any experience with this? Thanks,Kim

Hi, The DAN doctor has ordered the following: antiDnase B strep antibodies antistreptolysin O Ab CBC diff IG AEGM IgG subclasses 1-4 streptozyme Vit. D Comp. Metabolic Panel Histamine level My question is this: Are the CaM Kinase and the antineuronal antibodies only done by a certain lab. I head that Dr. Cunningham wasn't accepting specimens anymore. I just need to know if I need to beg the pediatrician up here to add this on as I don't want to stick him twice nor miss something. Thanks, Kim

Thank you for replying. I called the Latimer office already....can't get in until August 15th. Told them I live close and can come within 90 minutes of a call. As I type this, my son has come over to me for a hug while he is experiencing choreiform movements. this all can easily bring me to tears. Please let me know how to contact the Virginia biomed group that is looking into PANDAS for their children. I am grasping at straws at how best to proceed now in the 5 month wait. You can email me Kimberlyharding@comcast.net. I am considering calling the DAN doc. to prescribe the zithrom. weekly prophylaxis in the interim as he does seem to worse today with all that I described and his extended release effects of the zithro. ran out yesterday. The culture won't be back before Friday and even if it comes back negative, something is making his symptoms worse since off antibiotics.

Hello, Yesterday, I took my son with autism to get a reculture. It had been 5 days off of Zithromycin. Rapid negative and waiting on culture with sensitivity which will take up to 5 days to get back. He is still demonstrating the tics and choreiform movements that developed WHILE ON zithromycin. Also has kept the OCD and auditory sensitivity and tactile sensitivity. While in the pediatrician's office, she saw some of his remaining choreiform movements and tics. Basically, she sent me off to a specialist...one she couldnt' recommend. She said just call phone numbers and ask. She also irritated me as she said go to specialist in autism.....I tried to explain to her that my son had autism before he had PANDAS. Like his choreiform movements related to his autism, not the strep throat he had before they developed. So many people use autism as an excuse instead of a clue to poor immune function. So now I guess I call for appt. with Dr. Latimer as she is an hour away from me. Has she been helpful to you? I read on here she has wait until June. I don't know if I can stand this until June. Our whole family is reeling from this. First you lose them to autism, get them back and he and family's life changes for the better and now strep and PANDAS steals him away again. yes, I am havign a pity party. I'll pull myself out of it and fight as I did with the autism. Don't worry. I have a DAN doctor familiar with PANDAS and using IVIG as well. he sent me homeopathic strep. I moved Ryan up to 2 drops yesterday adn last night, he had horrible exacerbation of anxiety related to tactile which turns into OCD. If I touch his shoulder for example, that touch sends him into high pitched SIT DOWN SIT DOWN and then I must physically sit him down and say sit down. This can be head down, leg down, fingers down. Anyhow, I think I'll stop homeopathy. Last night was horrible for entire family. The immunovir the DAN recommended is supposed to be coming. Scared about that too as I read it made so many people feel worse. These were CFS women. I haven't seen much about it used with PANDAS but I guess the theory is to modulate immune system. Big deep breath. so glad to have this forum to talk to. Thanks, Kim

Quick history: Son with autism, always had worse winters with flaring anxiety/OCD type behaviors, needing HOH on printing,coloring. Viral illnesses always flared these symptoms. I now realize he has probably been a PANDAS kid all along, right? Then he actually contracted strep throat sometime this Feb. most probably. I had no idea except that he had a huge exacerbation in his anxiety/OCD as well as mild separation anxiety. I took him in just to rule out strep throat and bang! positive rapid throat culture. Entire family screened....all negative but him. Once on 5 day zithromax, he developed tics and choreiform movements...quite pronounced actually in the 5 hours after dosing. Now off antiobiotic, 5 days, he is doing more play by himself, has more language, more eye contact, has had some decrease in taactile defensiveness but the following issues remain: still wants hand over hand for things I know he can do still having OCD related to motor issues (ie he will have leg up and say leg DOWN....I have to physically put his leg down and say LEG DOWN. Although he is still doing this kind of stuff, he is not as panicked about it. The head movement tic remains and he is doing choreiform type movements of his head/shoulder/upper back. The do seem to change in intensity/frequency throughout the day. So today we have been off the zithro for 5 days...DAN Dr. told me to go back and get a reculture and request culture and sensitivity. I am worried that 5 days is not enough time off antibiotics as the zitro. apparently is extended release for 5 days but he says it is enough time. I am also scared that they won't be able to do good enough swab and it will come back false negative. I am waiting on bloodwork orders that he is sending. What to do now? What are your thoughts on what remains symptom wise? I know they said tics are the last to go. Wait on repeat culture and what? Make appt. wtih PANDAS specialist? Get bloodwork first? I just feel like I have to go further than just treating his strep throat and wait until this all begins again next winter. We did start strep homeopathy through the DAN doctor and so far, I see no changes either way. DAN doctor prescribed immunovir(not here yet) and I guess based on lab results, he may be able to make case for IVIG. Thanks, Kim

Bulldog, Could the antibiotics have changed her flora just enough to make her have some yeast growing.....needing glucose to feed the yeast bugs and not her brain and causing mood swings? My only idea but wanted to try and give you some support. Kim

Staying calm...:-) Consult with DAN doctor today Repeat throat culture and sensitivity on Monday. he will be 5 days off Zithromycin and he assured me this was enough time. Hope he is right. Bloodwork...immune panel, I guess strep titers, etc. I asked for tick borne illness but he didn't want to go that route yet? I won't forget though. Strep Homeopathy arriving tomorrow to start. he said it could either be a miracle or a dud. Ryan in the past did Homeopathy with Rudi Verspoor and I just remember horrible healing reactions. What are your experiences with Homeopathy as far as healing reactions? Immunovir which is antiviral that comes from Canada....I guess it has to do with immunemodulation??? even though strep is not a virus. and last resort maybe, IVIG. off to search for homeopathy responses you all have gotten. TOnight, I am encouraged just a bit on the rollercoaster. While he is having high pitched anxiety over words and phrases still adn still has the tic head rolls/arm movements, tonight, he has played with his playmobil zoo, leapster, etc. This is definite change from the separation type anxiety he had several days ago. Kim

Norcalmom, I already have him on fish oil and alot for years. He can't tolerate curcumin...maybe because of phenols. I gave him Ibuprofen yesterday in the midst of the exacerbations he gets after antibiotic dosing......it seemed to do nothing. Prior to the strep throat diagnosis when he wasn't this bad, I tried ibuprofen for only 2 doses and at that point in the story....it seemed to sedate him initially and then he went on about his day still wtih anxiety. What other ideas for antiinflammatory do you have. I am about to post an update after talking to the doctor today. Thanks so much for all the feedback. Kim

First thank you so much for the replies as I am trying to stay calm. Second, I gave his last pill at 3 pm yesterday so I can't change the time to see if it truly correlates with the pill adminstration but I sure do think it does. for example, today he is still doing the tic like head roll but not much arm and definitely no leg involvement. I talk to DAN doctor today at 2 pm who on a call the day he was diagnosed with strep mentioned doing 1 time a week Zithro. prophylactically. Of course, he doesnt' yet have the information that I have given here regarding what has improved on Zithro. (there have been some things) but what has not (further progression of ticks, remaining sensory issues, anxiety related to phrases). Poor little guy, right now he is at computer with sweatpants pulled up his legs as he has new behavior where he can't have his pants touch his achilles tendons. So I will ask today about bloodwork to get him testing for the tick borne infections. Dread that as I still have almost PTSD from all the blood draws when he was very sick with autism years ago. It sucks to start over again......knowing nothing about all this PANDAS, TICK BORNE stuff........but I already did this once wtih autism. I can sure do it all over again with PANDAS,etc. So hoping for a silver lining in this cloud as maybe this is the reason why the only thing that ever helped Ryan's symptoms of autism were interventions that were immunomodulatory. Again, I can't thank everyone enough for all the support and the massive knowledge base that is here. I will visit the Lyme forum to ask them about where to go in that direction. kim

Hello,\ My son took his last dose of Zithromax (z pack 250 mg) today. 5 day course. I have definitely noticed a pattern. He takes the pill at 3 pm each day and then in the following 4 hours, he has more anxiety related to phrases, more strep symptoms. But what especially has me worried is that last night was the worst. When he had undiagnosed strep, he had a tic like movement that involved squinting eye, head roll, and tongue protrusion. The tongue protrusion and head tilt is gone. But last night after his last pill, the exaceration of choreiform movements was the worst. He sat beside me at dinner having definitely uncontrolled head rolls, with some shoulder involvement. As the night went on, his left arm became invovled(Looked like it was being picked up by a marionette string) and when walking, he started to do something with his left leg in Target, so much so that his shoe came off. What does this mean? Does this mean that the antibiotic is killing off more strep? I am used to die off being expressed by tears/unexplained crying. Also, last night, seeing this reaction, I gave him 200 mg of Ibuprofen to see if it would help. No effect whatsoever on the choreiform movements. In fact, as I said, the choreiform movements were the worst ever tonight. He had light sensitivity and was squinting last night too. Since the antibiotics, I can tell you that his tongue protrusion tic is gone, his language has come back and I believe his eye contact is better. All EXCEPT the 4 hours after his antiobitic. So what does this mean for those of your more experienced. Is this good sign? Should I pursue longer antibiotics. SHould I wait 7 days, culture again, and then pursue more antibiotics? I have consult with his DAN tomorrow who prescribed the Zithromax and during a previous call, he mentioned something about a weekly dose of zithro. Thank you for your advice. Kim

thank you all for your guidance. We are pretty much in crisis mode right now as this is all very new to us and I needed to hear that this is one battle I could concede on. Kim

Hi, My son just had strep throat which I have no idea how long he had it, had exacerbation of anxiety and OCD symptoms for 4 weeks prior. he fits the description of PANDAS. I did not tell school that he has PANDAS yet as I haven't yet had his DAN write that down or conclude that officially....although every health professional I have come in contact with (through family screening) seems to indicate he is. Anyhow, they have had him going to the bathroom in the nurse's office because at times, my son still needs assistance. I wrote in to ask them to think of an alternative bathroom for him to use. I personally know that there is a private bathroom that the office staff use right by the nurse's office. My rationale is that even though in classroom he is exposed to 22 other kids, in 3-4 trips to the nurse's office a day to go to the bathroom, he is exposed to all the sick kids in the school that pass through as well as all the immunocompromised kids like kids with autism, etc. that either need to come there to take medication or are sick all the time themselves. They say the nurse's bathroom is the cleanest bathroom in the school but I say every time he passes in that room, he is at higher risk of being exposed to all germs but especially strep. And the fact that I know that they have a private bathoom that adults only use (less likely to be sick I would think) makes me a bit frustrated. I will try and ask his DAN this question on Thursday and get a note from him maybe if he thinks reasonable.....but until then, wondering what your thoughts were. Thanks, Kim

Hi, I am new to this. have a Dan doctor who obviously believes in/is familiar with PANDAS. Working with peditrician right now who is aware of PANDAS but not sure just how much. What would be your recommendation on a scientific article to take with me. I made another appt. to request a recheck throat swab after 5 day z pack. Thanks, Kim

Mayzoo, Thank you so much for your response and your link to your story. I am so happy your daughter is doing better and I pray we can get there too. I am currently on hold at the doctor's office to schedule repeat strep test for Thursday as this is end of antibiotics. I also want to ask them if they did a sensitivity on the throat culture that was sent out. Atleast I hope that they sent it out even though it rapid tested positive. I appreciate any information that anyone can share. Today, he has continued to have some of the same issues....not leaving my side, stuck on some words with anxiety and need for repetition, some head movements, repeating one phrase over and over on occasion, as well as squishing his body in teh seat when he thinks h e is not sitting good enough. So this is on day 4 of antibiotic. I am nervous. Kim

My son has autism.....almost 9 years old. Was doing well. Every winter though, he has exacerbations of anxiety and need for repetition of certain words, also phrases that cause him anxiety and he must have them repeated. Also, he goes through phrases where he needs hoh to write and he hates to color. That is HOH too. This would gradually improve towards May and through the summer. Something else that rings a bell now is I had stopped his VSL 3 probiotic that does have strep in it. When I saw him going downhill in Feb. I restarted it as I had no idea this could be strep PANDAS problem. I noted he reacted to that and stopped it. So there is yet another "strep" clue. He was drinking camel milk since August which has many listed benefits for immune/gut/etc. Many reported seeing good things from it. We did see positives. We also saw alot of sickness this winter where he gets sicks for 2 weeks and then takes 2 weeks to have body inflammation go down. However, in Feb. I saw decrease in language. I stopped camel milk after reading about Folate antibodies and language seemed to come back atleast some. As the weeks in Feb. continued on, he continued to have anxiety, get stuck on buzz words. He would have a good day here and there. He also wanted Hand Over Hand for everything. Still to this day, he won't click the mouse button for example. He went through a phase where he wouldn't use his spoon to eat food unless you scooped it for him. At the beginning of March, he started to have extreme sensory defensiveness. If we would touch his shoulders, he would connect that with the anxiety buzz phrase "sit down" and need us to sit him down adn say the word. Similar stories if you touched his back, leg, fingers....it is "fingers down" and you have to say fingers down and physically put his fingers down. So this is his OCD....it is not like OCD with cleanliness,etc. Also, he would wake at night and say HELP ME and want me to put both arms around him instead of just the one I already had around him. He also says "running" and we have to pretend we are running in between transitions and say "running". About 2 1/2 weeks ago, he had a runny nose for 2 days and he was very happy. It went away. Never went to his chest like colds always do. About 1 1/2 weeks ago, he had a fever only Monday night and Tuesday. Again, so happy during the fever. Was not eating. I also remember a gross booger out of his nose which I thought was unusual. he started eye squinting and then added a head back movement and when he added the tongue sticking out, I started to worry. Wed. to doc for physical and she felt no swollen lymph nodes, no fever. She didn't attempt hard enough to get throat culture. On Sat. I took him back and said please culture him so I can rule out strep (as I wasn't sure he completely qualified for PANDAS). What a surprise when it came back positive on the rapid strep. test. Now I am scared to death about PANDAS. He is on day 4 of Zpack (zithromycin 500mg first day and then 4 more days of 250 mg). So far, I would say Day 2 he was worse as far as phrases that produce anxiety and also about the same when it comes to touching his body and then him needing us to physically complete "sit down" or "leg down". Day 3 he is not as irritable. Still getting stuck on words, has added new behaviors of trying to squish his body into whatever he is sitting on like he is OCD'ing about being completely touching the chair. he also yesterday kept feeling his achilles tendon on both ankles and held pants up so that they didn't touch that area. And I am also seeing that he wants to be contantly beside me....this is new as I didn't see that in the beginning of this 4 week flare/subsequent strep. My plan: Reculture him Thursday before I talk to his DAN doctor via phone Thursday pm ....last day of antibotics is Wed. I am worried that because he is not better, maybe the strep he has is not sensitive to the Zithromycin. Please advise: Shouldn't he be settling down with some of the OCD/anxiety/sensory stuff by 4th day of antibiotic. I am so worried. I also read that I could use OLive Leaf Extract and xylitol nose spray potentially. Should I get all my family members tested for strep? My daughter will be going on Augmentin for teeth extraction Friday so that should take care of her. What else? Should I not be scared that we are on day 4 of antibiotic and alot of PANDAS type issues remain. Please share your experiences as I am so worried. We had made so much progres and now we are going backwards. Kim