T_Mom Posted July 2, 2009 Report Share Posted July 2, 2009 We started using antibiotics in a preventative manner (half-strength) as described in the research--after an exacerbation. We were using them initially ONLY in an effort to keep "strep" or other illnesses away. However, when my d was not "clearing" after one exacerbation, we "discovered" that with a longer period of full-strength antibiotics she improved week to week (gradual improvement, with slow but noticeable reduction of OCD and tics.) This was a surprise. It took 3 months to get her back to 95% herself. We were using Amoxicillan, and continue to do so (6 months now.) ** Does anyone know if ALL antibiotics have anti-inflammatory/immune modulating properties? We were told by one doctor that Amoxicillan does, and it appears that Zithromycin must as well--others? ALso, this past post by EAMom raises the issue of giving an anti-inflammatory/immune modulating antibiotic appropriately, so the effects are constant of course-- As far as I can tell, Augmentin's half-life isn't much longer. The amoxcillin portion is 1.3 hours and the clavulonic acid(clav. acid makes the amoxcillin more effective) portion is 1.0 hour. (Compared to Azith. which has a 1/2 life of 68 hours.) This link http://books.google.com/books?id=DO-7q2Vzz...num=4#PPA202,M1 (see the top of page 202, chart) shows that with amoxicillin, there is pretty much no drug left in the blood stream after 8 hours. (So the same would hold true for Augmentin.) In addition I haven't been able to find any literature that actually states that Augmentin (or amoxcillin) is an effective strep prophylaxis given 1x daily. Since it's half-life isn't much longer that Pennicillin's...it makes me think that it really needs to be given 2x daily to effectively prevent strep. Does anyone have more information on this? Link to comment Share on other sites More sharing options...
EAMom Posted July 2, 2009 Report Share Posted July 2, 2009 I found this http://general-medicine.jwatch.org/cgi/con...99/119/5?ck=nck which looks interesting...unfortunately you have to pay to see the whole thing. (I hate that!) Link to comment Share on other sites More sharing options...
T_Mom Posted July 3, 2009 Author Report Share Posted July 3, 2009 Thanks EAMom, Your link led me to one of the original-study reports addressing Amoxicillan dosing. http://pediatrics.aappublications.org/cgi/...stract/103/1/47 I just wonder if All antibiotics have the same properties of (what appears to be) anti-inflammation and immune modulating effects which we apparently are seeing with Amoxicillan and Azithromycin. I am afraid to take my daughter off the full-strength Amoxicillan, and she has had no bad effects yet -- I am anxious to see the "Saving Sammy" book and their experience with strong antibiotics over the course of an extended time. Link to comment Share on other sites More sharing options...
T_Mom Posted July 3, 2009 Author Report Share Posted July 3, 2009 Alex--If you are reading this, I just read your post from June 22 : "In our meeting with Dr. Geller, he prescribed the same thing, a 'robust' dose of Augmentin for a long time. I am going to make a unique post about the consultation, but to make a long story short, Dr. Geller stated that anti-bioitcs have anti-inflammatory and immune modulating effects, not just anti-bacterial effectiveness. This confirmed to me what I have noticed on here a great deal, kids with PANDAS improve on anti-biotics even when they aren't fighting an active case of strep. Anit-biotic therapy is an emerging field in the treatment of many auto-immunde disorders even though they are not sure exactly why it works. We have a friend who has lupus that goes into remission when on antiibiotics, and reemerges when she goes off. So, anti-biotics are most certainly a treatment for PANDAS, not just for strep." Was it your impression that Dr Geller was saying that ALL antibiotics are anti-inflammatory and immune modulating? Thanks-- Link to comment Share on other sites More sharing options...
EAMom Posted July 3, 2009 Report Share Posted July 3, 2009 Hi t mom...you can private msg Alex and then she'll get a notice on her e-mail. Link to comment Share on other sites More sharing options...
EAMom Posted July 3, 2009 Report Share Posted July 3, 2009 interesting.... so once daily was 750mg/day how much amoxicillin is your dd on? Link to comment Share on other sites More sharing options...
Kayanne Posted July 3, 2009 Report Share Posted July 3, 2009 Dr. Latimer put my dd (44 lbs) on 100mg of azith along with prednisone. She only has two days left of the steroid, but enough refills on the abx to get us thru september. But I'm concerned the dose is too low to help prevent a breakththrough infection, and too low for the anti-inflammatory and immune-modulating properties to help her. Dr. Latimer said that she should be about 95-99 percent back to her original baseline by the end of the steroids. My Husband and I don't feel that she is there, and of course I'm really scared that she won't fully be back to her old self. I have an email out to Dr. Latimer asking her what is next, and what does she feel we should do with the abx. I personally think it would be better to get her off of them if the dose is too low...what is the point really? But I told her I am open to increasing the dose... We believe that this is her first episode (or first one that was disruptive enough to be noticed), do any of you have thoughts about IVIG or Plasma Exchange so early in this? Or should I push for a higher dose of abx to see if we get any results? I'm so worried....god bless you all for your input on this forum...it is a real comfort to me and my family...hugs to all! Link to comment Share on other sites More sharing options...
EAMom Posted July 3, 2009 Report Share Posted July 3, 2009 What dose of prednisone is your dd on? (curious...as you are the 1st I know of who has done this protocol) I remember MomMD saying something about Dr. Latiimer having a family emergency. Hopefully she'll get back to you soon. Yes, I would vote for trying a higher dose of Azith., at least for a few weeks. My dd was about 45 pounds when she started azith at 250mg/day, although she quickly got up to 50 pounds (azith helped her eating/anorexia). You could always do 200mg/day if Dr. Latimer thinks 250 mg is a bit too high. However, the dose your dd is currently on (100mg/day) should be enough to prevent strep....so I certainly wouldn't stop it. When you are done with the pred, you could think about starting advil. (You shouldn't do pred and advil together, due to stomach problems.) Good question about doing IVIG.... we've done antibiotics for over a year, and now we're planning on IVIG (plus continuing with the abs). I suppose the past year for us has confirmed that the abs aren't enough for us. Maybe if we had done IVIG 1 year ago we might have wondered if it was really needed?? don't know. Link to comment Share on other sites More sharing options...
Kayanne Posted July 3, 2009 Report Share Posted July 3, 2009 What dose of prednisone is your dd on? (curious...as you are the 1st I know of who has done this protocol) I remember MomMD saying something about Dr. Latiimer having a family emergency. Hopefully she'll get back to you soon. Yes, I would vote for trying a higher dose of Azith., at least for a few weeks. My dd was about 45 pounds when she started azith at 250mg/day, although she quickly got up to 50 pounds (azith helped her eating/anorexia). You could always do 200mg/day if Dr. Latimer thinks 250 mg is a bit too high. However, the dose your dd is currently on (100mg/day) should be enough to prevent strep....so I certainly wouldn't stop it. When you are done with the pred, you could think about starting advil. (You shouldn't do pred and advil together, due to stomach problems.) Good question about doing IVIG.... we've done antibiotics for over a year, and now we're planning on IVIG (plus continuing with the abs). I suppose the past year for us has confirmed that the abs aren't enough for us. Maybe if we had done IVIG 1 year ago we might have wondered if it was really needed?? don't know. Dr. Latimer's perscription called for 5ml/mg (after some searching, we found a pharmacy that only had 1mg/ml in stock--I'll try to remember the doses based on Dr. Latimer's original script) Day one: 2mls Next week: 2mls twice a day 2nd week: 1ml twice a day 3rd & 4th weeks: 1ml once a day We refilled the perscription, and the pharmacy had orderd the 5mg/ml solution, and they wouldn't flavor it because it was so concentrated...it is nasty. I only needed it yesterday, today and tommorrow, and then she is done. Yesterday, I mixed it with juice...still had to pry her mouth open....today I'm going to try mixing it with soda. The 1ml/mg perscription said it was generic for pedia-pred. It was a mint flavor, and after a couple of times of prying her mouth open (she was refusing to eat anything at the time), she started to take the medication with no problem...If I have to do this again, I would definetly use the pedia-pred instead. Link to comment Share on other sites More sharing options...
P_Mom Posted July 3, 2009 Report Share Posted July 3, 2009 For anyone that is seeing Dr. Latimer or waiting for a reply..... You may not hear from her for a while...she indeed has suffered a substantial family crisis....sit back...it may be a bit. In the meantime, you may want to keep her and her family in your prayers. Kelly Link to comment Share on other sites More sharing options...
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