Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 you may want to visit the site www.pandasnetwork.org. I see a PANDAS specialist and he feels augmentin works the best. I do hear others that say azithromycin works the best because is goes inside the cells. My son is 13 and has severe PANDAS....we are seeing progress with the augmentin. Our doc said after about 3 months he will switch him to azithromycin twice a week.  From: chocolatiluv <chocolatiluv@...> Subject: 12 yr. old doing Date: Monday, December 13, 2010, 10:58 AM  My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. We do speech therapy O.T.Music therapy ect. He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 What about amoxycillan? Sent from my iPhone On Dec 13, 2010, at 11:50 AM, Fund <susan_fund@...> wrote: you may want to visit the site www.pandasnetwork.org. I see a PANDAS specialist and he feels augmentin works the best. I do hear others that say azithromycin works the best because is goes inside the cells. My son is 13 and has severe PANDAS....we are seeing progress with the augmentin. Our doc said after about 3 months he will switch him to azithromycin twice a week. From: chocolatiluv <chocolatiluv@...> Subject: 12 yr. old doing Date: Monday, December 13, 2010, 10:58 AM My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. We do speech therapy O.T.Music therapy ect. He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 > > > From: chocolatiluv <chocolatiluv@...> > Subject: 12 yr. old doing > > Date: Monday, December 13, 2010, 10:58 AM > > > Â > > > > My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. > We do speech therapy O.T.Music therapy ect. > He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. > QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. > We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. > Thanks > Carole > > > > Thanks I have been on that site although he has never been diagnosed with PANDAS he has all the symptoms & has always had problems with hidden strep. Last time I searched we have not been able to find a Dr in Ohio. Do you know if Dr. Goldberg would use these meds? Carole > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 amoxicillin does not work for PANDAS. Amoxicillin does work for a current strep throat infection. However, my younger son who is neuro typical (nt a Pandas kid) just got strep throat for the second time in his life. The first time we treated with amoxicillin and he was fine. THis 2nd time we treated with the amoxicillin and he got better but once we stopped the amox after ten days the strep came rght back. He is now on a 2 week course of augmentin. I think there are more difficult strains of strep running around these days.  From: chocolatiluv <chocolatiluv@...> Subject: 12 yr. old doing Date: Monday, December 13, 2010, 10:58 AM My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. We do speech therapy O.T.Music therapy ect. He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 Did Dr G subscribe the Augmentin? ________________________________ From: Fund <susan_fund@...> Sent: Tue, December 14, 2010 9:23:37 AM Subject: Re: 12 yr. old doing amoxicillin does not work for PANDAS. Amoxicillin does work for a current strep throat infection. However, my younger son who is neuro typical (nt a Pandas kid) just got strep throat for the second time in his life. The first time we treated with amoxicillin and he was fine. THis 2nd time we treated with the amoxicillin and he got better but once we stopped the amox after ten days the strep came rght back. He is now on a 2 week course of augmentin. I think there are more difficult strains of strep running around these days. From: chocolatiluv <chocolatiluv@...> Subject: 12 yr. old doing Date: Monday, December 13, 2010, 10:58 AM My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. We do speech therapy O.T.Music therapy ect. He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 We are on the East Coast and working with a DAN doc. WE just switched DAN docs and are now seeing (now with Neubrander and formerly with Bradstreet). is a PANDAS expert and on the PANDAS medical advisory board. Dr G seems to like Ery Ped. There are different strains of strep that run thru different parts of the country. I know a few years ago there was a tough strain in San Francisco that responded well to azithromycin. From: chocolatiluv <chocolatiluv@...> Subject: 12 yr. old doing Date: Monday, December 13, 2010, 10:58 AM My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. We do speech therapy O.T.Music therapy ect. He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 Very good point! My son responded well to Azithromycin but when switched to Clavulin – we lost him again. His short term memory went along with other good behaviors that were there in the beginning. For our guy I truly believe that yeast enters his brain and takes him over. I would like to know if there is any evidence of yeast in spinal fluid? From: [mailto: ] On Behalf Of Fund Sent: December-14-10 10:24 AM Subject: Re: 12 yr. old doing amoxicillin does not work for PANDAS. Amoxicillin does work for a current strep throat infection. However, my younger son who is neuro typical (nt a Pandas kid) just got strep throat for the second time in his life. The first time we treated with amoxicillin and he was fine. THis 2nd time we treated with the amoxicillin and he got better but once we stopped the amox after ten days the strep came rght back. He is now on a 2 week course of augmentin. I think there are more difficult strains of strep running around these days. From: chocolatiluv <chocolatiluv@... <mailto:chocolatiluv%40> > Subject: 12 yr. old doing <mailto:%40> Date: Monday, December 13, 2010, 10:58 AM My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. We do speech therapy O.T.Music therapy ect. He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 Thanks ! Sent from my iPhone On Dec 14, 2010, at 9:23 AM, Fund <susan_fund@...> wrote: amoxicillin does not work for PANDAS. Amoxicillin does work for a current strep throat infection. However, my younger son who is neuro typical (nt a Pandas kid) just got strep throat for the second time in his life. The first time we treated with amoxicillin and he was fine. THis 2nd time we treated with the amoxicillin and he got better but once we stopped the amox after ten days the strep came rght back. He is now on a 2 week course of augmentin. I think there are more difficult strains of strep running around these days. From: chocolatiluv <chocolatiluv@...> Subject: 12 yr. old doing Date: Monday, December 13, 2010, 10:58 AM My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. We do speech therapy O.T.Music therapy ect. He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 > > From: chocolatiluv <chocolatiluv@...> > Subject: 12 yr. old doing > > Date: Monday, December 13, 2010, 10:58 AM > > My grandson has been on going on 3 yrs.reading these post about older > children on this protcol having more difficult time getting better. He has > improved tremendously on awareness, alertness, eye contact physically more > healthy(days not felling well) still not much speech. > We do speech therapy O.T.Music therapy ect. > He has days when he is great happy, participating in play,then next day he can > be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. > Reading these post thinking the antibiotic (Erped) is not working anymore he has > been on this for a yr. > > QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what > is the next step? Is there another antibiotic that will work for him? We live in > Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just > wondering what parents with children this age are doing. > > We are always very optimistic & believe this is the right treatment for him also > know this is a long road ahead for him to get better.Very difficult seeing all > these ups & downs. > Thanks > Carole > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 Carole, Do you know why Dr. G. doesn't prescribe augmentin? Lucy ________________________________ From: chocolatiluv <chocolatiluv@...> Sent: Tue, December 14, 2010 9:09:44 AM Subject: Re: 12 yr. old doing > > From: chocolatiluv <chocolatiluv@...> > Subject: 12 yr. old doing > > Date: Monday, December 13, 2010, 10:58 AM > > My grandson has been on going on 3 yrs.reading these post about older > children on this protcol having more difficult time getting better. He has > improved tremendously on awareness, alertness, eye contact physically more > healthy(days not felling well) still not much speech. > We do speech therapy O.T.Music therapy ect. > He has days when he is great happy, participating in play,then next day he can > be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. > Reading these post thinking the antibiotic (Erped) is not working anymore he >has > > been on this for a yr. > > QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so >what > > is the next step? Is there another antibiotic that will work for him? We live >in > > Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also >just > > wondering what parents with children this age are doing. > > We are always very optimistic & believe this is the right treatment for him >also > > know this is a long road ahead for him to get better.Very difficult seeing all > these ups & downs. > Thanks > Carole > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2010 Report Share Posted December 15, 2010 My son actually developed OCD while taking long term zithromax for lyme. After 2 years of extreme symptoms we have finally resolved them with Augmentin. Caryn > > From: chocolatiluv <chocolatiluv@... <mailto:chocolatiluv%40> > > Subject: 12 yr. old doing > <mailto:%40> > Date: Monday, December 13, 2010, 10:58 AM > > My grandson has been on going on 3 yrs.reading these post about older children on this protcol having more difficult time getting better. He has improved tremendously on awareness, alertness, eye contact physically more healthy(days not felling well) still not much speech. > We do speech therapy O.T.Music therapy ect. > He has days when he is great happy, participating in play,then next day he can be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. Reading these post thinking the antibiotic (Erped) is not working anymore he has been on this for a yr. > QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so what is the next step? Is there another antibiotic that will work for him? We live in Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also just wondering what parents with children this age are doing. > We are always very optimistic & believe this is the right treatment for him also know this is a long road ahead for him to get better.Very difficult seeing all these ups & downs. > Thanks > Carole > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2010 Report Share Posted December 16, 2010 > > > > From: chocolatiluv <chocolatiluv@> > > Subject: 12 yr. old doing > > > > Date: Monday, December 13, 2010, 10:58 AM > > > > My grandson has been on going on 3 yrs.reading these post about older > > children on this protcol having more difficult time getting better. He has > > improved tremendously on awareness, alertness, eye contact physically more > > healthy(days not felling well) still not much speech. > > We do speech therapy O.T.Music therapy ect. > > He has days when he is great happy, participating in play,then next day he can > > > be totally opposite back to not sleeping, not eating, all the PANDAS symptoms. > > > Reading these post thinking the antibiotic (Erped) is not working anymore he > >has > > > > been on this for a yr. > > > > QUESTION FOR ANYONE WITH A DIFFICULT CASE?? Has your child done this? If so > >what > > > > is the next step? Is there another antibiotic that will work for him? We live > >in > > > > Ohio do ph. consults with Dr. G. my daughter is consulting thru E-Mail also > >just > > > > wondering what parents with children this age are doing. > > > > We are always very optimistic & believe this is the right treatment for him > >also > > > > know this is a long road ahead for him to get better.Very difficult seeing all > > > these ups & downs. > > Thanks > > Carole > > > > Quote Link to comment Share on other sites More sharing options...
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