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Posts posted by jtp

  1. Hello,


    I was reading junkyardjeans post and got me thinking/worried. I read over and over that most(not all) Pandas children have an exacerbation first from strep then go on antibiotics and their symptoms subside. We have never had this happen so I'm concerned that I am doing the right thing.


    My DS first episode 2008 (he was 8) started after taking antibiotics for bronchitis/ear infection (amoxicillan). He was fine on the antibiotics but then several weeks later began the tics and bizarre behavior. His rolling eye tics were the most frightening.

    Our pedi checked for Lyme and Strep with a blood test and he neither showed up. His tics/behavior lasted about 4mos then subsided. He was diagnosed with transcient tics. Now in between episodes he had colds/fevers etc without antibiotic use and never developed any more tics or bizarre behavior.


    2nd episode summer of 2011 (he was 11) after a few months of stuffy sinuses and post nasal drip/cough he developed an ear infection. He was prescribed Zithromyicin 5 days. Infection cleared no problems but two weeks later he went right into eye rolling tic again and a bit more hyper/not listening and focusing. Back to the Pedi same scenario again he was diagnosed with transcient tics.


    So now I have this connection with tics/behavior and antibiotic use. I have brought this up with the Pediatrician and asked if he had a reaction to antibiotics and she said that antibiotics would not cause this. My husband tells me to stop with this association of the two because I have been told by two doctors that this could not be caused by the antibiotics. I also understand that this is an autoimmune problem so his antibodies could have caused the delayed tics/behavior.



    Anyway reading junkyardjeans post today made me think, is it possible that my son was herxing after taking the antibiotics? He didn't have any problems with the antibiotics while taking them.


    We just saw Dr B last week and he prescribed Augmentin but changed it to Zithro because I recalled him getting stomach upset with that when he was younger(before all this). He still has ongoing sinus issues So he was prescribed 200mg in AM and 200mg PM until we see him in June. I will be giving him probiotics as well.


    He is not having any tics/ or behavior issues right now and I'm just a bit worried that this treatment may bring them back on. He only has a few weeks left of school and it's his last year there so I want him to enjoy it and not struggle with tics and hyper/focusing issues.


    Sorry for the long story (this is why I don't post often, haha). If anyone has had similar experience, or if this could be herxing from the antibiotics please let me know.

  2. What sort of probiotic should my DS use while taking augmentin. Is yogurt okay? or should we use a supplement.There are so many confusing articles about the use of probiotics do they actually work? We had our first appt with Dr B today and he prescribed augmentin for at least a month until we see him again in June.My son is 12 years old and has had two episodes one in 2008 and another in 2011. Dr B thinks my son has strep in his sinuses. I am not a big fan of using antibiotics long term but Dr B. took a lot of tests and said that we can not move forward until his sinuses are clear from infection. I am trying to avoid killing his good bacteria. He has rarely taken any antibiotics and is sensitive to medications.


    Thanks for any advice given.

  3. The Neuro at Children's in Boston saw my son after his symptoms had cleared(because it took so long to get the appt). So he was just going on what we had told him. He was very concerned and told us that should his symptoms return after another virus/infection to get a throat swab and titers tested. He wants to rule out the possibility of this being Sydenhams Chorea which would leave him to diagnose my son with Parainfectious OMS ( I haven't found OMS mentioned anywhere on this forum). The only mention of PANDAS was from me, he wasn't touching the PANDAS diagnosis. I have scheduled the test today and I plan on going back to Children's for a follow up. I don't think these tests will confirm a strep infection. I'm not so sure my son has Parainfectious OMS either but I'm going to explore all possibilities.


    Most posts I read here are about children with terrible exacerbations so I was wondering if some children get mild episodes like the one my son is having now. I'm not quite sure this is an episode because it's coming on slowly. His first episode was terrible and scary the second was shorter in duration, but here we are on our 3rd, I guess.


    At least I will have another lab report to bring with me to Dr B's appt in May and he can retest again if needed.

    Oh and Colleendonny we're from North Central Mass.

  4. Hello,


    I'm not a big forum user but I do read this forum quite often and have posted occasionally.


    I have a son who has some issue but not diagnosed yet. He had what seemed to be a PANS episode in 2008 (he was 8 years old then) and nothing in between then and 2011. He seemed to have another episode this summer but it was a bit milder than in 2008. He has seen two different Neurologists one local in 2008 and when it happened again we saw a Neurologist at Boston Children's Hospital. First Neuro said he had transcient tics then 2nd said he had either Syndenhams Chorea or Parainfectious OMS and gave me the impression that he does not believe there is a PANS diagnosis. At least he said something more than transcient tics because that it was not. Both episodes followed an infection where antibiotics were used.


    Both times he was tested for Strep titers and Lyme disease with blood test and both times Lyme was negative and Strep titers were considered normal.Our pediatrician heard of PANDAS but since the tests came out negative she said he didn't have it. The second neurologist asked that if he has another episode to have him tested again for strep titers right away to rule out SC and make the diagnosis of parainfectious OMS. His main symptoms are Eye rolling tics and behaviour changes.


    He had a virus a few weeks back, sore throat post nasal drip and a fever. It only lasted a few days and he was fine for two weeks. Last week he began with very mild eye blinking and slight eye rolls. He has not progressed any further and the tics seems very mild. I have given him a bit of motrin in the mornings and it seems like the tics are non existant after that until the next day.


    So after all this background here's my question:


    Should we have his titers checked again to rule out SC or is this not really an episode? Both previous times the tics were extremely noticable and came on pretty strong in the beginning. He has never tested postive for strep and has never been treated for a strep infection. My gut feeling is the test will come out negative again.


    We have an appt with Dr B next month to get another opinion. Can PANS have mild episodes? Any advice would be greatly appreciated.


    Thank you for reading.

  5. Hello again,


    Well the results from the blood tests were all negative. I suspected they would be anyway. I finally convinced his Ped that these tics (mainly eye rolling and neck jerking) were caused by either the antibiotics or the infection. Last time she thought I was crazy. So at least now she's consulting with an immunologist. I'll know more next week. In the meantime what other supplements can I use to try and calm his tics. Some days they are less than others, but it must be difficult to read in school with his eyes rolling all over the place. I can see he's trying to stop them but it's not working. I do not comment on them at all because he's very sensitive. Last time this happened his tics and behavior (just a little off from normal) lasted 3 to 4 mos. I hope it won't last that long this time. Any suggestions will be appreciated. He is taking fish oil, danactive and multi vitamin now. oh and I'm trying acunpunture this week too. Hope something helps.

  6. Thanks Cynthia, My son ate lots of sugary foods over the summer as well. Since he'd only been on antibiotics twice in his life I'm thinking it has something to do with the infection itself or the residual effect of the antibiotic. If it is yeast, how do you get your Dr to prescribe Nystatin? Our Pediatrician said a probiotic yogurt is fine. I've been giving him that since he had the azithromycin. I spoke to his Ped again this morning and he went for a blood test again for Lyme, ASO and CBC. We'll see what the results are in a few days. It's just too odd that the two times he was given antibiotics he's gotten tics. His personality is a little off as well. He seems like his mind is somewhere else. Tonight when I put him to bed he said to me "Mom, I feel like I have to keep doing something but I don't know what it is." Somethings up and I just hope we get to the bottom of it. I'll repost what his results are when I get them. I'd also appreciate any supplement suggestions.


    Thank you,


  7. Hello, I was on this forum a few years back when my son had a bacterial infection when he was 8. He was on 2 courses of antibiotics because another infection started 2 weeks after he finished amoxiclln. He did not have strep. He did have a vaccine PCV I believe it was called when he was baby and it was supposed to ward off pneumococcil and strep bacteria from turning into ear infections. Pardon my spelling I'm in a rush this morning. A few weeks after having antibiotics he started having facial tics mostly eye rolling that was severe. His Pediatrician tested him for strep-negative and tested him for lyme also negative. I kept asking if this was induced by antibiotics and she said no it wouldn't do that. Then we went to a neurologist and by the time we got to the appt he was doing better 3 mos later. They said it was transcient tics and it would go away. It did, but now 3 years later he had an ear infection in July and was prescribed azithromicin and in August he began those same tics again... Can this be caused by an infection not related to strep? Can this be caused by the antibiotics? Or does he have too much yeast from the antibiotics an it's causing tics? Whom do I see for this? I wasn't too pleased with the neurologists, they didn't help at all. My son has always been sensitive and I fear that he will be made fun of for the tics. He has had bullying issues before. Any ideas would be greatly appreciated. We live in Massachusetts. I will not be able to check back until this evening. Thank you

  8. Thank you all for sharing your thoughts and ideas with me. They have been very informative. I'm not sure if I can wait until the Neuro appt or not but I'm going to explore as many options as possible. There seems to be many possible causes for the tics. My son's Pediatrician was well aware of Pandas and that's why she tested him for strep. It was a blood test. I had no idea at the time what she could have been talking about but I know now. At the time of the visit it seemed that Lyme disease should have been the diagnosis. He had a tick bite a long time ago, but no bulls eye rash or flu like symptoms.


    He may have allergies but wouldn't he have reacted to the allergan many years ago? He is a very picky eater. He is also sugar sensitive so we have always tried to limit the sweets and candies. Absolutely no soda in this house!! His drink of choice is milk and he does drink quite a bit of it. He was at a ball game and his Dad bought him a root beer and his tics were out of control. Sugar definitely affects his tics. Also video games. He hasn't played any since this all began. He's gotten used to not playing but asks to play once in a while.


    The yeast also sounds like a good possibility as well. Is that spit test really reliable? I was thinking on trying that in the morning.


    I'm not ruling out an allergy to amoxicillin either since that's when all this began.


    I will try a few simple things before we go the Neuro appt. I just want to rule out any other issues first. I have a feeling we will be trying to locate a Natural Medicine Provider. They seem to be open to alternative approaches. I'v spent many years seeing a Neurologist for Migraine headaches since I was 5 years old and I still get them today. I don't really have too much faith in them. That's why I'm here.


    Again thank you all for posts. I will be checking back often and updating if I find out any news!!

  9. This is my first time using a forum but I have already seen so much information here I had to join and see if anyone else had a similar experience.


    My son is 8 years old and has developed some tics recently. I noticed some odd behavior back in late April after he had been on amoxicillin twice. First in March for Bronchitis (after having a post nasal drip cough/cold) then in April for an Ear infection. His nasal symptoms never cleared up but the Bronchitis did. Two weeks after the antibiotics were finished he starting getting hives when he scratched himself. He kept saying something was biting him. Soon I realized it must have been a reaction to the Amoxicillin. I gave him Benadryl and the hives stopped wthin a week. His behavior seemed changed. He wasn't listening as well and seemed unhappy. He was very moody and seemed a bit depressed. He kept complaining of stomach aches. He would look pale for a day then look fine the next. I started noticing when he would say he had a stomach ache he looked pale, when the stomach ache went away he was fine. He began saying that he hated himself. This behavior was not my son at all. He was always full of self esteem, happy go lucky. I started looking on the internet for anxiety, depression disorders in children but never put it together that this all started happening after the double dose of antibiotics. My son had only been on antibiotics once before when he was 2 years old.


    Since he's always had an off and on stuffy nose I thought his first tic, nose scrunching, had to do with that. He began nose scrunching in May/June. He was still complaining off an on of a stomach ache but I just thought it had to do with something he ate or had to go to the bathroom. He also began getting headaches off and on. His behavior and emotional state had improved. Then in August he started with eye blinking and it quickly went into eye rolling and a slight neck roll. At one point it had gotten so bad I made an appt with his pediatrician and she thought it might have been lyme disease. He was tested for lyme disease and strep and both came out negative. She suggested we see a neurologist. The tics were pretty bad and I was scared on how he was going to handle them at school. When school came around they stopped!!! I thought they were gone for good. Our appt with a Neurologist was for Sept 25 but I thought we may not need to go after all. Then my son got another stuffy nose and shortly after that the eye rolling and neck jerking returned. He started getting very moody and irritable again. He started getting nighmares as well. The tics are still present today but his nose has cleared up. His behavior and mood are improving too. I was glad we never canceled the Neuro appt. The day of the appt the Dr's office called and said they had to cancel and we are now rescheduled for Oct 16.


    Since it has taken so long to see a Neurologist I thought I'd benefit by getting as much information as I can before I go. I have a feeling that he won't agree that the antibiotics had anything to do with this but somehow I feel that they do.


    Has anyone experienced this type of situation before? Any information would be greatly appreciated.

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