momtocole1

Do you have any other info on the steriod burst. My dr. wants to wait to do it until after Ryan has been on the zith for 2 weeks. We see him on Monday. Thank you for replying, Judy

Thank you so much for writing back. My son is 111 pounds. Do you have any data on the 500 mg. Zithromax that I can share with my son's dr. I completely agree with you on the Motrin, it seems to really help. Thanks, Judy...

Dear Colleen, I replied already, but something happened with the site and I don't think it actually was sent. Thank you so much for getting back to me. My son is 111 pounds at 11 years old. He is overweight. He gained a tremendous amount of weight when we put him on Prozac. Do you think you could forward me the info on the 500 mg. of Zithromax once you get it from your doc. I have tried to find it on the net. My dr. said that he would up the dose to 500, but I am afraid. What I don't understand is why my dr. said that we can't do a strep culture while my son is on antibiotic, that it will come up negative. A couple of days ago his throat became all enflamed again and his tonsils looked really big. His symptoms have been pretty bad. I thought that a strep culture would be positive if he is on the wrong antibiotic or the wrong dose. Is that correct. This new dr. that I found is a board certified md and a dan doctor. He has a son with PANDAS and autism, but he does not seem very knowledgeable about PANDAS. I have been telling him what I want to do based on my research and that is an uneasy feeling. Please let me know if you have any info on the 500 zith. Thank you, Judy

Dear Colleen, Thank you so much for your reply. My son weighs 111 pounds. He is overweight for his age. I would be so grateful to get the info on the recent research about the higher dose of Zithromax so that I can fax it to my doctor as soon as possible. Ryan is just having so many tics. If the higher dose might help I would like to do it. What I still don't understand is this: Ryan woke up with a very sore throat yesterday. His toncils looked swolen and his throat was irritated. I asked the dr. if we could try another antibiotic and he said to stay on the zithromax for the full two weeks and then we would see how Ryan is doing. He is currently on day 6 of the 14 day regimin. The dr. said that I should not bring Ryan in for another strep test because he is on antibiotic so it will be negative. This is the part I don't understand. I know that typically a throat culture will show a negative result if a child is on an antibiotic, but what if it not the correct antibiotic. If the Zith is not killing the strep bacteria then wouldn't it show positive? The dr. said it might be a viral thing that Ryan is dealing with now on top of overcoming the strep. He said the sore throat could be to Ebstein Barr virus. He is not overly tired though. Motrin does seem to help, I am thinking that it is overal reducing inflammation. I did use Bactroban for the impetigo and that helped. What seemed to finally help the most was the oral keflex he was on a few weeks back when he first got the strep. It was hard for the external antibiotic to work because Ryan kept picking at the impetigo sore and licking it and breaking it open by opening his mouth really wide. It became a tic. (God help me! ) Thank you for the advice, I will definately call that dr. you mentioned. Could you please tell me about your child with PANDAS or can I read your story on this site? Please let me know if you doc. is able to provide more detail on the research re: 500 mg. zithromax. Take care and it is so nice to know that I'm not alone! Judy...

Hello, I am new to this group and so glad that I found it. I have a son that is 11 years old. He was diagnosed with PANDAS about 3 years ago. He was doing really well up until about 4 weeks ago when he got another strep infection. He had no symptoms of strep, but had a huge impetigo like sore on the corner of his mouth. Overnight his OCD went through the roof and his tics started to get really bad. The pediatrician put him on 10 days of Keflex, he got better very quickly. Tics/OCD was not gone, but much better. Within 5 days things went very down hill again. We started Keflex and by day 7 gave up because the symptoms were worsening so much again. We found a new doctor that is a DAN dr. and he perscribed Zithromax for 2 weeks and then we will go through testing. We have done metals testing about a year and half ago through a holistic type doctor and results were negative for metals. We have never done blood work, he is absolutely petrified of it so I have never forced him. Now I think he has to do the blood work. He was doing so well for so long that I felt like the PANDAS was gone, and then BOOM. I almost don't know where to start. I have been reading all the different forums on this site. Pandas, OCD and Tics/Tourettes. My son does not have any of the "gut" issues that many kids on the spectrum have but he does have a somewhat sensitve stomach. I am trying to get him to learn to swallow pills. He takes a calcium/mangnesium supplement at night to calm him down which helps. It seems that the Zith is not working at all, he just seems to be getting worse. He has a new tic tonight where he is clucking his tongue very loudly. What was really strange is that he seemed to start to really improve on the first 2 days on the zith, then this past Saturday I gave him a 1/2 of a capsule of Natural Factors double strength acidophilus and Bifidus. I think I really overdid it. He got 5 billion active cells. Things went way down hill from there. Could this one dose really cause a problem. A friend told me that I should have started at 1/2 a billion. It is hard to believe that a supplement could cause such a problem. He has become very explosive, crying all the time. New tics each day, he is perseverating so much and is going into the backyard to sword fight alone, it is like is slipping into his own world. I am so worried and I don't even know where to start. We have tried different meds over the years and quite a few natural supplements, 5htp, inisotol. None of them seemed to ever help but I don't think I stuck with it long enough. He sees an OCD therapist hat is doing ERT which was helping, slowly until the strep hit. I don't know where to turn and it feels like he just keeps getting worse. Sorry for such a long initial post. I have also posted on the OCD and the PANDAS forums too. Thank you, Judy...

Hello, I am new to this group and so glad that I found it. I have a son that is 11 years old. He was diagnosed with PANDAS about 3 years ago. He was doing really well up until about 4 weeks ago when he got another strep infection. He had no symptoms of strep, but had a huge impetigo like sore on the corner of his mouth. Overnight his OCD went through the roof and his tics started to get really bad. The pediatrician put him on 10 days of Keflex, he got better very quickly. Tics/OCD was not gone, but much better. Within 5 days things went very down hill again. We started Keflex and by day 7 gave up because the symptoms were worsening so much again. We found a new doctor that is a DAN dr. and he perscribed Zithromax for 2 weeks and then we will go through testing. We have done metals testing about a year and half ago through a holistic type doctor and results were negative for metals. We have never done blood work, he is absolutely petrified of it so I have never forced him. Now I think he has to do the blood work. He was doing so well for so long that I felt like the PANDAS was gone, and then BOOM. I almost don't know where to start. I have been reading all the different forums on this site. Pandas, OCD and Tics/Tourettes. My son does not have any of the "gut" issues that many kids on the spectrum have but he does have a somewhat sensitve stomach. I am trying to get him to learn to swallow pills. He takes a calcium/mangnesium supplement at night to calm him down which helps. It seems that the Zith is not working at all, he just seems to be getting worse. He has a new tic tonight where he is clucking his tongue very loudly. What was really strange is that he seemed to start to really improve on the first 2 days on the zith, then this past Saturday I gave him a 1/2 of a capsule of Natural Factors double strength acidophilus and Bifidus. I think I really overdid it. He got 5 billion active cells. Things went way down hill from there. Could this one dose really cause a problem. A friend told me that I should have started at 1/2 a billion. It is hard to believe that a supplement could cause such a problem. He has become very explosive, crying all the time. New tics each day, he is perseverating so much and is going into the backyard to sword fight alone, it is like is slipping into his own world. I am so worried and I don't even know where to start. We have tried different meds over the years and quite a few natural supplements, 5htp, inisotol. None of them seemed to ever help but I don't think I stuck with it long enough. He sees an OCD therapist hat is doing ERT which was helping, slowly until the strep hit. I don't know where to turn and it feels like he just keeps getting worse. Sorry for such a long initial post. I have posted on the PANDAS forum and will also post on the tics forum as well. Thank you, Judy...

Hello, I am new to this group and so glad that I found it. I have a son that is 11 years old. He was diagnosed with PANDAS about 3 years ago. He was doing really well up until about 4 weeks ago when he got another strep infection. He had no symptoms of strep, but had a huge impetigo like sore on the corner of his mouth. Overnight his OCD went through the roof and his tics started to get really bad. The pediatrician put him on 10 days of Keflex, he got better very quickly. Tics/OCD was not gone, but much better. Within 5 days things went very down hill again. We started Keflex and by day 7 gave up because the symptoms were worsening so much again. We found a new doctor that is a DAN dr. and he perscribed Zithromax for 2 weeks and then we will go through testing. We have done metals testing about a year and half ago through a holistic type doctor and results were negative for metals. We have never done blood work, he is absolutely petrified of it so I have never forced him. Now I think he has to do the blood work. He was doing so well for so long that I felt like the PANDAS was gone, and then BOOM. I almost don't know where to start. I have been reading all the different forums on this site. Pandas, OCD and Tics/Tourettes. My son does not have any of the "gut" issues that many kids on the spectrum have but he does have a somewhat sensitve stomach. I am trying to get him to learn to swallow pills. He takes a calcium/mangnesium supplement at night to calm him down which helps. It seems that the Zith is not working at all, he just seems to be getting worse. He has a new tic tonight where he is clucking his tongue very loudly. What was really strange is that he seemed to start to really improve on the first 2 days on the zith, then this past Saturday I gave him a 1/2 of a capsule of Natural Factors double strength acidophilus and Bifidus. I think I really overdid it. He got 5 billion active cells. Things went way down hill from there. Could this one dose really cause a problem. A friend told me that I should have started at 1/2 a billion. It is hard to believe that a supplement could cause such a problem. He has become very explosive, crying all the time. New tics each day, he is perseverating so much and is going into the backyard to sword fight alone, it is like is slipping into his own world. I am so worried and I don't even know where to start. We have tried different meds over the years and quite a few natural supplements, 5htp, inisotol. None of them seemed to ever help but I don't think I stuck with it long enough. He sees an OCD therapist hat is doing ERT which was helping, slowly until the strep hit. I don't know where to turn and it feels like he just keeps getting worse. Sorry for such a long initial post. I will post on the OCD and Tic forums also. Thank you, Judy...

Could you please tell me which medication helped your son with tics. We have tried quite a few and his reaction was so severe that we have up and have not tried any for over two years. He recently had a strep throat infection and he is a PANDAS child. I have been reading all the info on the PANDAS forum. I keep switching from this one to that. Anything you could share would be a Godsend. Thank you,