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  1. [thank you so much for the advice. advil is in and i am upping antibiotic asap quote name=dcmom' timestamp='1348667803' post='146890] So sorry I know the emotions. I would up the abx (if you can) and add five days of regular (3x day) advil dosing immediately. Then I might taper to your normal abx and one advil per day for a week. If she is not doing well at the end of these almost two weeks, I personally would do a steroid burst. When we are able to use this protocol- it works like a charm!
  2. Just feeling blue. My daughter has her first fever today of the new school year. we had 3 months of wonderful, a perfectly non ticing, happy sweet angel. now we wait for the pandas crash that will arrive any day now.
  3. thanks so much everyone for all the replies, i can't tell you how much better I feel. i'm going to stop looking up horror stories on the internet and trust my mom instincts which have served me well thus well!
  4. So i bit the bullet and scheduled the surgery for my 5 year old daughter. I am now reading up on the surgery and the recovery sounds god awful. Anyone want to share their experience. i have a phone consult with Dr T in the morning to discuss choices for iv meds and antibiotics after surgery. but I was looking for some thoughts/advice regarding the recovery process. now i'm second guessing this decision. hearing its 10 days of ######
  5. So my daughter was diagnosed almost 3 years ago. at first all her symptoms went away completely with augmentin. That seemed to stop working so we switched to zithromax this past january. All her tics disappeared within the first few days and her behavior was wonderful. after a string of viruses and a heavy exposure to strep (9 cases in her class), the tics were back with a vengence. We tried augmentin and zithro combo at one point. we are ok with pandas symptoms but the vocal tics are constant. she's never had them for such a long period of time before. we are with dr t right now. not sure if its time to make an appointment with Dr B or try Dr L. I just don't know what to do. Wondering if the tics are just something we have to live with or if i should be trying to completely erradicate them. we've never done ivig or steriods.
  6. my daughter has pandas and does not have any ocd. she tics like crazy and has all the rages/emotional meltdows when she is in a flare. when we have the right dose of antibiotics they go away in the blink of an eye. but you have to find the right dose. recently my daughter had all symtoms while on daily augmentin, it wasn't until we really upped the dosage that she cleared. just because your child does not have ocd or just because symtoms have not remitted while on antibiotics does not clear them from a pandas diagnosis. i have yet to meet a pediatrician who isn't highly skeptical of pandas. i know some exist but all the ones i know think its extremely rare and should disappear if on 100 mg of amoxicillian.
  7. i think its also possible that the times he has reacted with pandas like symptoms were because you were dealing with strep, i know it can hide in ears and nose etc. perhaps the other colds where he did not react did not involve strep. your son may not mount a defense to strep which is why you wouldn't see a rise in antibodies. my daughter never has it show up in blood work. also that blood work has to be done several weeks apart and done just right. because your son gets tics when antibiotics stop i am guessing you are dealing with pandas. they really need those meds for a long time, the typical 10 day or 5 day course doesn't work
  8. I know that Dr B has found some success with using both augmentin and zithro. is this something dr latimer does as well..multiple antibiotics
  9. Hi everyone, we've had such a hard time with these tics. Not sure what to do. Zithromax got rid of them completely a few months ago and we had a blissful 2 months of silence. but she got like 3 viruses in a row and i have'nt been able to get rid of them since. tried motrin, she's on daily zithro now but was doing every other day. Called trifileti this morning who will up it to twice a day. wondering if the mistage i made was to take her down to once a day then every other day. she was perfect on twice a day. so couple of questions. for those who have ticers, how long do your tics last after an exacerbation. and for those on zithro, what is your normal dosage and you flare dosage. if upping it to twice a day does not work i'm wondering if we should try steriods for the first time
  10. My daughter is taking the liquid form of zithro daily. Do I need to disguard after 10 days and get a refill. Does it go bad or start to lose potency
  11. Zithro seems to be working miracles for my dd. however I am now so worried that daily use over a long period of time will end up with her body just getting used to it. I think that was part of why augmentin stopped working this year. she has been on that daily for 18 months. For those of you who had antibiotics work at one point, do you wish that you had not used every day. I know some people put their kids back on antibiotics during flare ups, and use high dose etc. Just wondering what your thoughts are. Is it better to use zithro every day and just find another antibiotic when this one stops working. I don't seem to hear of too many people who have had the same antibiotic work for years. but I would love to hear from you if that was the case for you!!!
  12. wow, very interesting. maybe that is what is happening to my DD. I am so anxious for these numbers to come back. now wondering how many kids would show elevated tsh with pandas excacerbation
  13. I am sure they are related as well. hashimoto's is the likely diagnois here. waiting now on new blood work I did find in my research that gluten allergy is often found with hashimoto's. so i asked them to run that panel with the bloodwork. i've been on the fence about a trial gluten free run. but i don't think i should just throw that out there not really knowing if its an issue. so i'll be curious about that. somehow the the thyroid has to be connected to the pandas, both are autoimmune. I just wonder if there is some other "thing" causing the body to turn on itself like this. was it immunizations, gluten? not sure but something got her body going in the wrong direction. makes you wonder what other autoimmune stuff could pop up.
  14. I met with our pandas doc this week to update that we were seeing someone new and to share lab results. the nurse practitioner says "so is she on meds for the thryoid disorder" I'm like WHAT THYROID DISORDER. The last time my daughter had labs there was in march of 2010. they never mentioned that she had abnormally high thyroid labs. I am in disbelief. i can't even tell you how many times we've been in that office. thank god i switched to a new doctor, and thank god there was a cancelation at CHOP tomorrow morning. off to the endo doc we go. I've researched some and i'm guessing with her history its the type of hypothryroidism from autoimmune. i am just crying so hard tonight because i feel like i can't trust her medical care to anyone. that is frigtening in so many ways. every single thing she's ever come up with was because i reasearched it and explored it and insisted she get tested. what the heck is the matter with all these doctors!!!!!!!!!!!!!!!! a double pneumonia two years ago was only revealed because i demanded a chest xray after 8 weeks of coughing. IgA deficiency revealed because i insisted something was not right with her getting pneumonia each year. Mycoplasm revealed because pandas doc number one wouldn't test and i had to switch to another one. anemia revealed because someone finally agreed she looked like she was a vampire. i could go on and on. I just want someone who knows SOMETHING, someone who can figure out why she has so many immune problems. i cannot believe how many doctors have let me down. she is only 4 years old and is such an angel. i go to bed most nights frightened to close my eyes because it seems like if i'm not watching every second something else happens. does that make sense. i have no medical degree yet i've had to figure this all out. i am hear to say i think i've reached the end of what i can do, she is obviously a sick kid with a million problems and i just don't know what else to do or who to take her to. The sad part is, I finally got her on zithromax, she cleared up in 24 hours of all pandas symptoms, and now we have this. we can't catch a break here in south jerz. sorry for the vent all, you guys are all i have.
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