Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 I'm pretty sure that was the dosage suggested by the NIMH researcher at DAN! for prophylactic management of PANDAS. Debi > > Listmates, > My doctor put my son on zithromax at 250 mg once a week. Yes that is once a week. IS that dose too little? Is the frequency too less? Does anyone have any comments about this? > > > My son is 42 pounds and 6 years old. We tried OLE for more then a year and he still came out positive to pandas test. > > Thanks in advance. > > Neelam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 My son gets zithromax 250mg a day for 10 days, then we go to 2x a week. We do this for a few months then switch to omnicef and do the same thing. Dose it daily for 10 days then go to 2x a week. Kerrie Listmates, My doctor put my son on zithromax at 250 mg once a week. Yes that is once a week. IS that dose too little? Is the frequency too less? Does anyone have any comments about this?My son is 42 pounds and 6 years old. We tried OLE for more then a year and he still came out positive to pandas test.Thanks in advance.Neelam Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Our doc gave told us to do a 3 day course and then 250mg weekly thereafter. It didn't really work for us though, so we tried homeopathy which was helpful in managing this issue. We still need to avoid strep bacteria probiotics and foods (cheese, yogurt) though. > > Listmates, > My doctor put my son on zithromax at 250 mg once a week. Yes that is once a week. IS that dose too little? Is the frequency too less? Does anyone have any comments about this? > > > My son is 42 pounds and 6 years old. We tried OLE for more then a year and he still came out positive to pandas test. > > Thanks in advance. > > Neelam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 hi My two boys were on 250 mg of zithromax once a week for a year. it helped us immensely. Subject: Re: Zithomax for Pandas.To: mb12 valtrex Date: Thursday, May 21, 2009, 8:31 AM My son gets zithromax 250mg a day for 10 days, then we go to 2x a week. We do this for a few months then switch to omnicef and do the same thing. Dose it daily for 10 days then go to 2x a week. Kerrie In a message dated 5/20/2009 11:38:45 P.M. Eastern Daylight Time, nkewalhotmail (DOT) com writes: Listmates, My doctor put my son on zithromax at 250 mg once a week. Yes that is once a week. IS that dose too little? Is the frequency too less? Does anyone have any comments about this?My son is 42 pounds and 6 years old. We tried OLE for more then a year and he still came out positive to pandas test.Thanks in advance.Neelam Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hi Neelam - We are on 500mg once per week AFTER having done an intensive 6 days of Azythro and another antibiotic (my son is 15 yrs old and 160 lbs). My son has been on this for 5 months – it’s part of our DAN’s protocol for PANDAS – I believe to prevent another strep infection from surfacing. My local doc stated that it stays in the bloodstream for several days. There is no PANDAS test, it’s a diagnosis made by symptoms and some labs that show a high titer level for antibodies against strep. Now I just learned that if a person has gamma or beta strep in the gut, this can also send antibodies high but doesn’t mean that the person will have PANDAS. I am finding all this very confusing but I am looking for a result with OCD and haven’t found it yet. . . . . Heidi J From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of vimal_kewalramani Sent: Wednesday, May 20, 2009 11:38 PM To: mb12 valtrex Subject: Zithomax for Pandas. Listmates, My doctor put my son on zithromax at 250 mg once a week. Yes that is once a week. IS that dose too little? Is the frequency too less? Does anyone have any comments about this? My son is 42 pounds and 6 years old. We tried OLE for more then a year and he still came out positive to pandas test. Thanks in advance. Neelam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Someone should tell my former high profile big name DAN about this. My son had high alpha and gamma strep in stool tests for months and I was told not to be concerned. there used to be a great test from Neuroscience labs for anti-brain antibodies that was great for diagnosing PANDAS but sadly, they dropped it along with a few other test at the beginning of the year. Kerrie ok perhaps I can help clairfy some here. gamma strep high in the gut can bea SIGNIFIER you have a PANDAS kid or can be a beggining stage of PANDAS ifleft untreated. if you see this, you have a reason for concern, and needto work on irradicating it. if you see that it would also suggest to you tostay clear of strep lines in your probiotic as your child is not a goodcanadate for it. there IS a PANDAS test, it IS the titers test andsymptoms in combo. every PANDAS kid I have run across has had high GAMMAstrep in stool thus why I think we will see a pattern of kids that beingthe first red flag, and wonder if that will actually lead to a first signof problems. also wonder if the strep vaccine plays into this aswell....which watch out they are now planning on taking it from a 2-5 stainto a 7 I believe. Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Just curious- who was your DAN??? Subject: Re: Zithomax for Pandas.To: mb12 valtrex Date: Thursday, May 21, 2009, 6:32 PM Someone should tell my former high profile big name DAN about this. My son had high alpha and gamma strep in stool tests for months and I was told not to be concerned. there used to be a great test from Neuroscience labs for anti-brain antibodies that was great for diagnosing PANDAS but sadly, they dropped it along with a few other test at the beginning of the year. Kerrie In a message dated 5/21/2009 5:33:49 P.M. Eastern Daylight Time, christelking1@ myfairpoint. net writes: ok perhaps I can help clairfy some here. gamma strep high in the gut can bea SIGNIFIER you have a PANDAS kid or can be a beggining stage of PANDAS ifleft untreated. if you see this, you have a reason for concern, and needto work on irradicating it. if you see that it would also suggest to you tostay clear of strep lines in your probiotic as your child is not a goodcanadate for it. there IS a PANDAS test, it IS the titers test andsymptoms in combo. every PANDAS kid I have run across has had high GAMMAstrep in stool thus why I think we will see a pattern of kids that beingthe first red flag, and wonder if that will actually lead to a first signof problems. also wonder if the strep vaccine plays into this aswell....which watch out they are now planning on taking it from a 2-5 stainto a 7 I believe. Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 I think we are speaking the same language here – just in a different order. The way to dx PANDAS is to run the antibodies test and make a clinical diagnosis based on symptoms that correspond with an infection. Just because a kiddo has high titers does not mean they absolutely have PANDAS. It was recently posted on this list about how most school-aged children are carrying some level of titers for strep and some for several months to a year after a strep infection (sorry, I forget the link to that info). This does not necessarily mean they have PANDAS. Likewise, since my son’s titer have been coming down, we see no changes in his behavior or OCD as most parents see a huge reduction in these behaviors when their child has PANDAS. I think it may be more of an acute scenario than a long term one – my son has always had OCD. That being said, I have to agree with you that the stool strep does mean something; most docs say that since this isn’t the same strain as the strep throat virus, that it won’t cause PANDAS. Several parents on this list have experienced otherwise and I tend to believe the parent’s experiences than docs who sometimes miss these little things b/c they don’t live with our kids. Also, at DAN! this year, Dr. Baker said that they are not quite sure why strep is found in the gut – it doesn’t belong there naturally. Maybe another clue. . . . From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of christelking1@... Sent: Thursday, May 21, 2009 5:30 PM To: mb12 valtrex Subject: RE: Zithomax for Pandas. ok perhaps I can help clairfy some here. gamma strep high in the gut can be a SIGNIFIER you have a PANDAS kid or can be a beggining stage of PANDAS if left untreated. if you see this, you have a reason for concern, and need to work on irradicating it. if you see that it would also suggest to you to stay clear of strep lines in your probiotic as your child is not a good canadate for it. there IS a PANDAS test, it IS the titers test and symptoms in combo. every PANDAS kid I have run across has had high GAMMA strep in stool thus why I think we will see a pattern of kids that being the first red flag, and wonder if that will actually lead to a first sign of problems. also wonder if the strep vaccine plays into this as well....which watch out they are now planning on taking it from a 2-5 stain to a 7 I believe. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Kerrie, who was your DAN? I only ask because we're on the waiting list for a costly big name DAN now. Thanks, Kelley > > > Someone should tell my former high profile big name DAN about this. My son > had high alpha and gamma strep in stool tests for months and I was told not > to be concerned. > > there used to be a great test from Neuroscience labs for anti-brain > antibodies that was great for diagnosing PANDAS but sadly, they dropped it along > with a few other test at the beginning of the year. > > Kerrie > > In a message dated 5/21/2009 5:33:49 P.M. Eastern Daylight Time, > christelking1@... writes: > > ok perhaps I can help clairfy some here. gamma strep high in the gut can be > a SIGNIFIER you have a PANDAS kid or can be a beggining stage of PANDAS if > left untreated. if you see this, you have a reason for concern, and need > to work on irradicating it. if you see that it would also suggest to you to > stay clear of strep lines in your probiotic as your child is not a good > canadate for it. there IS a PANDAS test, it IS the titers test and > symptoms in combo. every PANDAS kid I have run across has had high GAMMA > strep in stool thus why I think we will see a pattern of kids that being > the first red flag, and wonder if that will actually lead to a first sign > of problems. also wonder if the strep vaccine plays into this as > well....which watch out they are now planning on taking it from a 2-5 stain > to a 7 I believe. > > > > **************Recession-proof vacation ideas. Find free things to do in > the U.S. > (http://travel.aol.com/travel-ideas/domestic/national-tourism-week?ncid=emlcntus\ trav00000002) > Quote Link to comment Share on other sites More sharing options...
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