Stephanie2 Posted October 21, 2009 Report Share Posted October 21, 2009 OK, this is a vent with a question... We had a phone consult scheduled with Latimer yesterday at 4:00, I had my MIL here to watch the kids and the office called and said that Dr. Latimer would call me at 5:15. So, I had to let my MIL go home and my husband had to leave work early to come watch the kids. Then the office called and said that Dr. Latimer was cancelling our appt and that she wants to reschedule for tonight at 5:00. So, once again I had to have my husband come home early and when I called the office at 5:03 the phone had already been shut off for the day...So now I am left hanging and I have no idea what time she is going to call (assuming she IS going to call) and my husband needs to go back to work! And to top it off I have PMS and this is really annoying me!!! So my question is, what time does she usually call at night? AND do you think she will come through with an antibiotic over the phone? We have 3 days of zithromax left and if she doesn't give me one I will have to order some from Canada or something (since we have already tapped out the pediatrician, the DAN doctor and the walk-in clinic). I guess I am panicking - just a little! Stephanie Link to comment Share on other sites More sharing options...
faith Posted October 21, 2009 Report Share Posted October 21, 2009 Stephanie, the abx that he is on is working? but you know for a fact he had strep right? since he's been on the abx, did it (the strep) resolve? if he goes off the abx, what happens? does this mean your child always has strep, or will get it right away again with no abx? Did you ever see Dr. L. in person? thanks Faith Link to comment Share on other sites More sharing options...
thereishope Posted October 21, 2009 Report Share Posted October 21, 2009 Maybe there's a simple answer for her not calling. Are you in the same time zone as she is? I'm sorry.... Link to comment Share on other sites More sharing options...
Char Posted October 21, 2009 Report Share Posted October 21, 2009 Dr.L office said she does not work on Mondays and Wednesdays. So I don't know if she'll call you. I am still waiting for her to call my sons doctor Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 21, 2009 Author Report Share Posted October 21, 2009 Faith, yes when I stop the zithromax he goes into terrible pandas symptoms...I just can't get an MD to keep him on it. I do know that he had strep (positive rapid test) and we have tried to take him off several times and he goes terribly backwards. My only guess is that someone in the house has strep (we have yet to be cultured)... No, we have never been to see Dr. Latimer. This is our first consult, and as of now, 6:15 she has not called and I am very discouraged. I have tried twice to call her cell phone. Stephanie Stephanie,the abx that he is on is working? but you know for a fact he had strep right? since he's been on the abx, did it (the strep) resolve? if he goes off the abx, what happens? does this mean your child always has strep, or will get it right away again with no abx? Did you ever see Dr. L. in person? thanks Faith Link to comment Share on other sites More sharing options...
michele Posted October 21, 2009 Report Share Posted October 21, 2009 Where do you live? She didn't give us an antibiotic and we saw her in person. Dr. K did not do an antibiotic over the phone either. You should save your money on a phone consult and see either of them in person or make an appointment for an immunologist. Or you could go to Statcare and fake a sore throat with exposure to strep and see if they would give you a script for zith. I have considered getting it from Canada since in OH it is next to imposiible to get Zith for PANDAS. A Dr. here who had patients on the original Sweedo PANDAS sudy said pen vk is fine daily and then clindamycin during exacerbations or strep positive cultures or if the household had strep. Dr. Latimer is not big on antibiotics especially zith. Good luck. I didn't find the phone consults got me anywhere but an expensive bill wih Dr. K. Sorry! Michele Faith, yes when I stop the zithromax he goes into terrible pandas symptoms...I just can't get an MD to keep him on it. I do know that he had strep (positive rapid test) and we have tried to take him off several times and he goes terribly backwards. My only guess is that someone in the house has strep (we have yet to be cultured)... No, we have never been to see Dr. Latimer. This is our first consult, and as of now, 6:15 she has not called and I am very discouraged. I have tried twice to call her cell phone. Stephanie Stephanie,the abx that he is on is working? but you know for a fact he had strep right? since he's been on the abx, did it (the strep) resolve? if he goes off the abx, what happens? does this mean your child always has strep, or will get it right away again with no abx? Did you ever see Dr. L. in person? thanks Faith Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 22, 2009 Author Report Share Posted October 22, 2009 Michele, Why wouldn't they (Dr. L and K) give you an antibiotic? So, is your child now on Pen VK? Is it working? Stephanie Where do you live? She didn't give us an antibiotic and we saw her in person. Dr. K did not do an antibiotic over the phone either. You should save your money on a phone consult and see either of them in person or make an appointment for an immunologist. Or you could go to Statcare and fake a sore throat with exposure to strep and see if they would give you a script for zith. I have considered getting it from Canada since in OH it is next to imposiible to get Zith for PANDAS. A Dr. here who had patients on the original Sweedo PANDAS sudy said pen vk is fine daily and then clindamycin during exacerbations or strep positive cultures or if the household had strep. Dr. Latimer is not big on antibiotics especially zith. Good luck. I didn't find the phone consults got me anywhere but an expensive bill wih Dr. K. Sorry! Michele Faith, yes when I stop the zithromax he goes into terrible pandas symptoms...I just can't get an MD to keep him on it. I do know that he had strep (positive rapid test) and we have tried to take him off several times and he goes terribly backwards. My only guess is that someone in the house has strep (we have yet to be cultured)... No, we have never been to see Dr. Latimer. This is our first consult, and as of now, 6:15 she has not called and I am very discouraged. I have tried twice to call her cell phone. Stephanie Stephanie,the abx that he is on is working? but you know for a fact he had strep right? since he's been on the abx, did it (the strep) resolve? if he goes off the abx, what happens? does this mean your child always has strep, or will get it right away again with no abx? Did you ever see Dr. L. in person? thanks Faith Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 22, 2009 Author Report Share Posted October 22, 2009 As of right now 8:45 pm, she still hasn't called. I have been stood up 2 nights in a row...is this a common occurance with Dr. L? Also, I need to get my hands on a good antibiotic...do you think she will do this over the phone? I got one reply that she probably will not. I am wondering if maybe I should just cancel this phone consult altogether... I have an appt with a new DAN doctor next week...maybe I can stick it out until then...ugh, so aggravating! Stephanie OK, this is a vent with a question... We had a phone consult scheduled with Latimer yesterday at 4:00, I had my MIL here to watch the kids and the office called and said that Dr. Latimer would call me at 5:15. So, I had to let my MIL go home and my husband had to leave work early to come watch the kids. Then the office called and said that Dr. Latimer was cancelling our appt and that she wants to reschedule for tonight at 5:00. So, once again I had to have my husband come home early and when I called the office at 5:03 the phone had already been shut off for the day...So now I am left hanging and I have no idea what time she is going to call (assuming she IS going to call) and my husband needs to go back to work! And to top it off I have PMS and this is really annoying me!!! So my question is, what time does she usually call at night? AND do you think she will come through with an antibiotic over the phone? We have 3 days of zithromax left and if she doesn't give me one I will have to order some from Canada or something (since we have already tapped out the pediatrician, the DAN doctor and the walk-in clinic). I guess I am panicking - just a little! Stephanie Link to comment Share on other sites More sharing options...
faith Posted October 22, 2009 Report Share Posted October 22, 2009 Stephanie, What were you supposed to discuss, your son's history? and ask her for recommendations? I'm wondering too why she doesn't favor antibiotics? I guess these doctors are treating PANDAS aggressively and they are basically into IVIG? We have an appt. in person in two weeks. Really I don't know what to expect, but I guess I have to start somewhere. Right now I just put my son on Augmentin from our ped. because we went in with a patch of red on his throat, so he agreed to give me the augmentin, but the strep test was negative and also the culture, so he told me to ciscontinue it because we are not dealing with strep. it had only been 3 days and I told him he was still having tics, it is less frequent, but I'm confused on it because he had a cold and was waning for those few days as is his pattern. Right now he is still doing his vocals, but its longer periods of quiet. but when he does, (like just now), its so loud, like a bird honking. Should I expect complete cessation? I'm confused, because you are thinking there is strep somewhere, but I'm pretty sure we are free here, altho I have come down with a deep cough. I also swabbed negative, but am on omniseph. my son always tics, I can't believe he was always exposed to strep. I don't understand how this all goes. Are your kids here not ticcing when they are not sick or exposed to strep? I'm guessing my son's problem is something else, .. is that possible? I mean, not strep, but viral or something chronic inside him? just don't know.... Faith Link to comment Share on other sites More sharing options...
thereishope Posted October 22, 2009 Report Share Posted October 22, 2009 With your script running out, call and makes appt tomorrow for the throat swabs. you don't have to say anyone is sick. Just say you need to get the family swabbed since someone had strep. You may be able to get in same day. We do it every time. When one is sick, we all get tested. My only guess is that someone in the house has strep (we have yet to be cultured)... Link to comment Share on other sites More sharing options...
dee45 Posted October 22, 2009 Report Share Posted October 22, 2009 Hi Stephanie, I know how you feel after 5 phone messages and several emails we are heading back to see her on the 30th of October it is extremely frustrating--even more frustrating when you do see her which we did and then can't get a hold of her since around the 2nd week of September. I know how angry and frustrated you must be feeling. Char--she never phoned your son's doctor either?? unbeleivable. Deanna Link to comment Share on other sites More sharing options...
sf_mom Posted October 22, 2009 Report Share Posted October 22, 2009 Trust me..... Your son needs a long term prescription of Augmentin or Azthromycin and only after TWO months then start to evaluate his improvements. A 10 day prescription will not tell you anything about his level of improvement. Cunningham results in conjunction with current symptoms will tell you concretely PANDAS or not. Keep pursuing long term antibiotics, IVIG and/or PEX for son. My son continued a baseline of all symptoms from June 24th until just about 10 days ago and he has been on antibiotics since August and completed IVIG in September. You should NOT give up until he is symptomless. -Wendy Stephanie,What were you supposed to discuss, your son's history? and ask her for recommendations? I'm wondering too why she doesn't favor antibiotics? I guess these doctors are treating PANDAS aggressively and they are basically into IVIG? We have an appt. in person in two weeks. Really I don't know what to expect, but I guess I have to start somewhere. Right now I just put my son on Augmentin from our ped. because we went in with a patch of red on his throat, so he agreed to give me the augmentin, but the strep test was negative and also the culture, so he told me to ciscontinue it because we are not dealing with strep. it had only been 3 days and I told him he was still having tics, it is less frequent, but I'm confused on it because he had a cold and was waning for those few days as is his pattern. Right now he is still doing his vocals, but its longer periods of quiet. but when he does, (like just now), its so loud, like a bird honking. Should I expect complete cessation? I'm confused, because you are thinking there is strep somewhere, but I'm pretty sure we are free here, altho I have come down with a deep cough. I also swabbed negative, but am on omniseph. my son always tics, I can't believe he was always exposed to strep. I don't understand how this all goes. Are your kids here not ticcing when they are not sick or exposed to strep? I'm guessing my son's problem is something else, .. is that possible? I mean, not strep, but viral or something chronic inside him? just don't know.... Faith Link to comment Share on other sites More sharing options...
EAMom Posted October 22, 2009 Report Share Posted October 22, 2009 I ditto SFmom...you need more abs. Link to comment Share on other sites More sharing options...
sf_mom Posted October 22, 2009 Report Share Posted October 22, 2009 I feel for you guys.... it seems like Dr. Latimer is overwhelmed lately. I think Dr. K is getting there too. Keep trying with Dr. L but I would also start looking into some other Dr.'s that can give you immediate attention. I'm under the impression you are all on the East Coast. What about the immunologist in CN or the Dr. that just went out on his own in NJ. Just trying to make any suggestion... as I know I always feel better when I'm making a plan of action rather than waiting around for somebody to call. Hi Stephanie,I know how you feel after 5 phone messages and several emails we are heading back to see her on the 30th of October it is extremely frustrating--even more frustrating when you do see her which we did and then can't get a hold of her since around the 2nd week of September. I know how angry and frustrated you must be feeling. Char--she never phoned your son's doctor either?? unbeleivable. Deanna Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 22, 2009 Author Report Share Posted October 22, 2009 I wonder why she is taking on so much if she can't handle it? I mean, she is stringing people along, people who desperately need help ASAP. I have been waiting for a month to see her...if I knew that she was not going to come through, I would have made an appt with someone else. Now I may have to get on another waiting list elsewhere! I have 2-3 more days of zithromax, time is sooo running out and I know he will fall apart when we run out. And ya know what kills me? All these docs that have cut us off from abx, if I were out there trying to get him an antidepressant, they would be writing it like crazy! I would have more than enough of that!! Just blows my mind. Well, I have an appt with a new DAN doc who I have researched. He usually does zithromax long term and he cultures the whole family, etc... But that's next week, and who knows if HE is going to come through b/c our titiers are low and maybe he will think that means it is not strep! Maybe when my child starts raging, I should carry him into the ped's office and say, "FIX HIM"! But then again, I'll walk out w an antidepressant....very deep sigh. Thanks for reading my angry rant!!!!!!!!!!! Stephanie OK, this is a vent with a question... We had a phone consult scheduled with Latimer yesterday at 4:00, I had my MIL here to watch the kids and the office called and said that Dr. Latimer would call me at 5:15. So, I had to let my MIL go home and my husband had to leave work early to come watch the kids. Then the office called and said that Dr. Latimer was cancelling our appt and that she wants to reschedule for tonight at 5:00. So, once again I had to have my husband come home early and when I called the office at 5:03 the phone had already been shut off for the day...So now I am left hanging and I have no idea what time she is going to call (assuming she IS going to call) and my husband needs to go back to work! And to top it off I have PMS and this is really annoying me!!! So my question is, what time does she usually call at night? AND do you think she will come through with an antibiotic over the phone? We have 3 days of zithromax left and if she doesn't give me one I will have to order some from Canada or something (since we have already tapped out the pediatrician, the DAN doctor and the walk-in clinic). I guess I am panicking - just a little! Stephanie Link to comment Share on other sites More sharing options...
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