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Basilbeth

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  1. thanks everyone for your replies. this is what I have noticed. I think my son has a good response to weekly (or about every 5 days) of zithromax to control his symptoms of pandas due to the anti-inflammatory (immune modulating) effects of zithromax. It's too hard to know what is triggering his symptoms....virus, strep, uri.... are any of you using zithro for these purposes? the macrolides type of antibiotics have this immune modulating property and many are using zithro for pandas in this way.... thoughts? you can google zithromax and immune modulation for more info on google or on latitudes....
  2. Hi, My son seems to greatly benefit from Zithromax taken for immunomodulation purposes. It acts an as anti-inflammatory drug, not for the anti-biotic properties. It seems he would need it every 3-5 days or so to be symptom free. Any thoughts?
  3. Hi, My 6 yr old son has a mild case of PANDAS for two years now. Last September we put him on prophylactic weekly zithromax because his ocd and rages had gotten more severe. All of his symptoms diminished almost immediately and he had a really fabulous winter, almost no signs of pandas. Then about 2 months ago he started having hyperactivity after getting his oral suspension (red liquid) zithromax, to the point where he said, "mom, I can't stop my body!" So, then I gave him a med holiday to see how he would be off of the zithro. Within 2 weeks a new tic started. Then we all got sick and he flared more (4 behavioral meltdowns in one week). He took some zithro for 3 days thinking we all had mycoplasma and found that he could now swallow pills. So, his behavior is pretty good, maybe some sensitivity 2-5 times a week, not full tantrums. However, his tics have increased in type of quantity. But no one hardly even notices them, not even him. But they exist, just watch him closely for 5 minutes and you'll see the repititions. Oh, also not sleeping well, bad dreams, peeing in bed at night. So, my question is should I put him back on a weekly oral pill of zithro or do we just tolerate all of this since it is quite tolerable. I understand that the zithro is used more for its immuno-modulation than for its antibiotic qualities. I just don't want his basal ganglia inflamed and causing him these mild discomforts. And I want his body in a neutral place. So, meds or no meds..... maybe for some weeks until we're more into summer and school is out so less germs around??? thoughts?
  4. What would you do? We are between health insurance and doctors at the moment....my 6 yr old son (PANDAS for 2 years) is on a typical weekly prophylactic dose of zithro for 6 months which really helped stop rages/behaviors. However, for the past month there is now nightly bedwetting, 45 minute ocd driven tantrums with rages several times a week, irritability, etc. We started a regular dose of Augmentin twice a day for 10 days then once a day after that. We're now just on the once a day augmentin dose just as of yesterday. No help has been seen with the Augmentin. I'm likely going to start giving the zithro more like every 4 days instead of every 7 days since that is when we start seeing behaviors. However, he's starting to have insomnia the nights that he takes zithro. What would you do next?
  5. thanks for all of the heartfelt responses. yes, I think it's time for some family therapy!
  6. thanks for the reply....I thought that this website was a place that we probably all have similar situations and can commiserate. I have kind of theorized that my son is his normal self 80 percent of the time, 10 percent are normal 5 year old behaviors, but 10 are pandas. and when he is flaring, then the pandas can go to 30 percent. thankfully not too often and ibuprofen helps a lot with the flares. when I have read up on tourette's it says that many kids do blow up more at home just because it is a safe and accepting place. i hate all of the suffering (repressing tics/emotions, etc) that is going on with these pandas kids. my son is mainly oblivious to his condition because he is only 5 1/2. it would be interesting to hear what a more adult person says about their pandas flares, behaviors, etc. does anyone have any anecdotes about whether pandas people have awareness of their brains, actions, emotions, etc? thanks for sharing your story, I hope that science will quickly come up with a cure for this...or maybe us parents will on the internet!! let's all keep sharing!
  7. Hi, my son was diagnosed with pandas 1 1/2 years ago with the onset of physical tics, behaviors and now verbal tics and more behaviors.... I am so tired of my friends, family, neighbors and even my husband questioning my parenting skills and seeming to blame a lot of my son's behaviors on me! It is hard to continue to be confronted about all of this. My son has a mild case of pandas and I believe that he keeps a lot of his adverse behaviors for when he is with me because I am his safe person. Many of my friends, neighbors and family cannot even believe that he has pandas because they do not spend enough time with him to be around for his irrational, aggressive, out of character tantrums, etc. They have rarely seen his tics because they are not severe. Even my husband cannot distinguish what is normal 5 year old behavior and what is pandas with our son. I can easily tell when my son is "not himself" and is acting in response to an "inflamed brain." My husband thinks that I have caused my son to be whiney and oppositional until he gets his way because I give in too much to my son's demands. But I give in to my son's demands at times because I know that they are more ocd driven and pandas influenced than my 5 year old trying to manipulate me into something. I do not have power struggles over something that will take 45 minutes to resolve when it is benign and fueled by pandas and not by conniving boy. I believe in peaceful parenting, not authoritarian styles of parenting. How can I convince people that it is my son and his pandas and not my mothering? should I videotape his outbursts that he has with me? should I not protect him from public meltdowns by preventing them with occassional isolation or ibuprofen? Should I see a therapist? any suggestions as to what kind? or a family psychologist? My son currently has echolalia (quietly echos people's speech) at times. I am not causing that! Some of the pandas stuff is very objective. It's the subjective behaviors that are hard to filter into regular kid stuff and pandas. But I hate to see my son suffer when my husband tries to hold his ground and make him "brush his teeth" when my son is digging in his heels in what I think is oppositional behavior fueled by pandas. I hate this! Suggestions? Do you experience these things too? And how many parents/families are struggling without even knowing that pandas exists? Basilbeth
  8. how long of a remission was you son in between ivig and first flare up? did you change your assessment of him being what you thought to be mild, then to moderate, based on his behavior after ivig and having lost sight of what his baseline was? what would make you get a repeat ivig?
  9. my son is not on antibiotics and only rarely tests positive for strep in the throat. he has not really ever taken long term antibiotics. the doctors (only mildly pandas friendly) state that since there isn't throat strep then why give him antibiotics? but strep could be anywhere in the body, right? his ASO titers are ok....300's (initially), 200's, 100's. but he gets into contact with some many bacterias/viruses/etc with friends and at school and at activities that I have no control over...and typically these illnesses or even just his immune system fighting off a virus without ever getting sick is all INVISIBLE activity! so frustrating. but this past month he had half of his body covered in poison ivy rash and became a neuropsychiatric mess. well duh on that one! if most of what he likely comes into contact is any kind of bacteria/virus/toxin then how to know which antibiotic to be on long term?? are your kids getting strep cultures from anywhere else than their throats? he still has his tonsils...they look ok. we have seen a fam pract, pediatrician, 2 ped neuros, one psychiatrist and now I plan to see a pediatric immunologist in about a month. but I still feel like I am losing time by educating and trying to persuade all of these doctors that my son has a classic pandas case. they all think that ivig is not the way to go. they think i'm crazy when i suggest this. but it's just because no one is yet doing it here in madison. these are not pandas specialists. they are barely on board with pandas. they appease me, but don't give much knowledge or advice that seems worthwhile. I tend to know more about pandas than any of them! and they tell me so! I may have to check on our insurance and have a phone consult or visit with dr. K in chicago.
  10. I have called Yale and they say he does not have severe enough symptoms to be accepted into the ivig study.
  11. thanks for the response, he has been sick for over 1 1/2 years, since he was 4 years old.
  12. by "help" do you mean IVIG? we've seen plenty of doctors, some believers in PANDAS, some not. but the only tool we have that works some of the time is ibuprofen.
  13. has anyone been successful with doing things to protect the immune system of their child? any books that are helpful, diets, vitamins, hygiene, etc???? my son will start a new school in a week and he can become symptomatic just being around sick people (his immune system is probably fighting whatever he came into contact with from them)....but, of course, most of it is invisible. except when this summer he had poison ivy rash and miserable behavior and tics triggered by it! thanks!
  14. my son is 5 1/2 years old and has PANDAS with physical and verbal tics and behavioral issues coming and going every few months. It is a very unpredictable situation. Should we consider IVIG to just get beyond this? I wouldn't call his case severe, more in the mild/moderate range. But waiting for puberty or to "grow out of this" seems like such a long, stressful wait with lots of consequences. Should we just start throwing money at the problem to rid him of this? Thoughts? I live in Madison, WI and there are no real specialists here in PANDAS so we may have to travel to Chicago or do lots of cajoling here locally with the medical community. Thanks....I know many of you have already been down this road....
  15. Hi, my 5 1/2 year old son has Pandas, tourette's, and is having an exacerbation that is occurring now which includes oppositional defiance disorder. he does not have an IEP (spec ed). he is starting kindergarten at a new school. what should i tell his teacher? I really want her to not punish or argue with him. if he is being defiant it is because he has brain inflammation and he is not really in control of his emotions. plus she will not easily win over his defiance...i'm afraid he'll end up with the principal and in big trouble. any thoughts as to how to tell her to deal with his defiance? the only thing that helps him is time and ibuprofen. but I can't give him ibuprofen every day for weeks on end while his antibodies are decreasing....help! 'Basilbeth'
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