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mom love

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Everything posted by mom love

  1. Phasmid, did your son taper down the dose of zithro toward the end and is he now still on a prophylactic antibiotic?
  2. I just happened to be reading a yahoo autism site and there is a valtrex group http://health.dir.groups.yahoo.com/dir/Health___Wellness/Support/Diseases_and_Conditions/Autism or just google it I think we can learn alot from the autism groups and vice versa.
  3. We have Nordic Naturals Children's DHA, small balls they can chew. I have stopped giving them to my PANDAS child wondering if they made her tic more and I want to see how she is on just the zithromax. It has higher DHA which I thought I read was better for these kids??? and it has Omega 9
  4. Can someone explain the intense stomach aches that my child is having. The doctor told me to give him Charcoal for this problem. Does anyone agree, or disagree? surf city, is the pain constant or just right after the zithro is taken? I'm sorry, I don't have any real experience with it all. I do know that our child eats, sort of alot, with the zithro, which is liquid and drinks alot of juice and water with it to get it all down. If she doesn't eat quite a bit, she will get a tummy ache right after. I hope someone else can be of more help. I saw someone else post they had to stop zithro because of stomache discomfort. You may want to start a new post to pull in those people. Is the zithro working?
  5. Nancy, or anyone, can you explain die off?
  6. I give florastor in am at wake up before breakfast. Buy it behind the counter at pharmacy. Open capsule and put in a dixie cup full of water. Also put it in applesauce. I am going to start culturelle today, probably at bed time. Found it at Walgreens, Culturelle for Kids I don't know anything about this die off thing.... Please keep the survey going so we can all learn.... Thanks!!
  7. Could we start a response thread on probiotic usage? What are you using? What is the dosage? perhaps including per weight or age or per antibiotic Is it a pill or powder? Where do you get it? Anything else that might be helpful about it.
  8. Thanks momto2pandas, I do want to do all that testing. How do they test for impetigo in the nose? I agree that we want to find the right antibiotics and someone to prescribe them. She has had a nose thing now for a while, redness around the bottom. Has actually gotten worse and more stuffy while on the zithromax.
  9. dd started with a nose itch late this summer that we really thought was an itchy nose but it recently turned into a face slap. Took her right in and asked for an antibiotic suspecting a missed strep. No throat test done but titers drawn and were negative. Have been suspecting PANDAS for a while but always treated active streps and she recovered from relatively mild symptoms. Doc agreed right away this time and gave us a 5 day strep dose zithro (7.5 ml 55 lbs) and by day 6 she was better about 90%. She backslid some and doc gave us a second dose and day one was better but now it is no longer better. I don't have much left. dd has obviously been trying to control the slapping but now it is a hit onto her jaw. Sometimes her teeth chatter with it. Our doc is smart and compassionate and wants to help but has no experience with this. She seems very hesitant to prescribe longer term higher dose antibiotics. I will pursue a consult asap - not exactly sure where to go for that - but what do I do in meantime? We think we should continue on this higher dose longer, like weeks, or another antibiotic, for weeks. Do you think the zithro is no longer working? should I request a change like to augmentin or omnicef? How do all of you get the antibiotics you need? Cheri or anyone - anything natural I can do at home to help this abate?
  10. parents4eyes, did the pharmaceutical antibiotic work for your child? Which one was it? Are you looking to move to a natural antibiotic as a prophylactic?
  11. Does anyone know about liquid zithromax? does that come in dye free? I was just going to post about our zithro experience changing now. My daughter begged me to have her second round of zithro flavored with grape and I did. Her first day on it she was fine, even better than the day before because it was the higher dose again. But the second day was a really bad day. I'm wondering if it could be the grape flavoring. But even the basic one has cherry flavor that she has always been fine with but then again she's never been in a big exacerbation like this one. Do you think the zithro may not be working anymore?
  12. danddd, we suffered from chronic dry and chapped lips and mouth for a while and a dentist recommended Aquaphor healing ointment from Eucerin. It worked overnight the first night and has always done the trick since.
  13. zithromax seems to be helping our child with this new tic and we were almost at 90-95% on day 6 (had last dose on day 5) but had no more medicine. She did provide another round but at a lower dose. We think she needs to be on the higher dose longer and we do want to taper, but slowly. Any well read people out there to help with cases published that show it is ok to use longer term? Obviously MANY children on here are doing it. We are getting a consult soon but we'd like to continue it now this week. thanks again
  14. Cheri, what do you mean by natural antibiotics? Like what? keep trying, let us know if they have a no dye version at your pharm.
  15. editing because I just saw your reply to Holly about dose. thanks
  16. Ariel 95, do you mind sharing the age and weight of your son and what the full dose was and what the 1/2 dose is now? Is the half dose considered a prophylactic dose? And is Dr. Murphy managing the zithro or your ped? How did you find out that zithro worked best for him? thanks again
  17. Not wanting to pull anyone away from Holly's post asking for results on zithro, I need to learn more about this drug and wanted to start a new post. Long story for my dd but had strep that either wouldn't get eradicated or had strep throat on top of each other and I requested zithro per discussions on here and it worked for the strep and for the minor tics she had at the time (didn't know it was PANDAS then) That was only one 5 day course. Since then her strep cases have been treated with omnicef and zithromax and she had no symptoms before, during or after the treated strep. She did have PANDAS symptoms on amox and it failed and we went to omnicef and it went away. Our situation now is asymptomatic strep, which we have caught, but we think we missed it recently and a much more serious tic evolved. Our doctor is open minded and we have shown her much research and she put her right on strep dose of zithro and she is 90% better. We and our doctor are looking to consult with an experienced doctor to find out about longer treatment periods, especially on zithro, and what the prophylactic dose for zithro is. So, obviously from what I read here, zithro can be taken long term at high doses? Not 5 days on and 5 days off? How does a doctor determine the prophy dose of it? How often does liver function need to be checked? Do most PANDAS children go on other antibiotic for prophy even if zithro is main treatment for exacerbations? Thanks so much mom love
  18. Hi there, we are wanting to consult with a doctor or two who has direct experience with treating PANDAS. We would like to consult and would like our local doctor who is open minded to consult as well in order to know how long to keep on antibiotics, which antibiotic to use and how to decide what prophylactic to use and dosage. The big doctors I see from this site are: Dr. Denis Bouboulis, CT Dr. Tanya Murphy, FLA - does she actually see patients? Dr Trifiletti Dr. Latimer Dr. Susan Schulman, Brooklyn, NY and I read about Dr. Catherine Nicolaides in NJ from "Saving Sammy" ANY actual experiences consulting with or visiting any of these doctors is appreciated ie. do they do phone consults? Do they lean toward antibiotics or IVIG? What is the wait time for a consult? Do you know the cost and contact numbers? Realizing every doctor has different opinions and protocol, any insights would appreciated so we can choose a direction. Thanks! mom love
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