simplygina Posted March 30, 2010 Report Share Posted March 30, 2010 We are a few days into our 3rd course of full strength Biaxin. Is Biaxin something he can stay on full strength for a long time like the "Sammy Dose" of Augmentin? or do we need to go to a prophylactic dose soon? We've got one more refill and then I will need to contact Dr. T. again to update him and decide what to do. Those who are using Biaxin, how long have you been taking it and what are your plans? Gains have been good though some back sliding this past week or so. He's had a really runny nose which I think is allergies because I've got them pretty bad myself. His mood has stayed overall dramatically better, though he still has a few cranky moments. He's doing much better in school too. Many of his OCD and tics are gone but those that remain are still very strong. I guess I'm not expecting 20-something days on abx to completely fix it all. I wish! I've added a new supplement called Wellness Formula from Source Naturals. It has a combo of herbs, antioxidants, vitamins and minerals that are supposed to help balance out the immune system. I'm hoping that it will help transition to a smaller dose without a relapse. We'll see. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted March 31, 2010 Report Share Posted March 31, 2010 We just finished first round or 10 days of biaxin. It seemed to help. My son's last dose was Friday AM. I have tried to contact Dr. T (about 6 times over the last week + without any luck. I feel like we were left hanging. We are a few days into our 3rd course of full strength Biaxin. Is Biaxin something he can stay on full strength for a long time like the "Sammy Dose" of Augmentin? or do we need to go to a prophylactic dose soon? We've got one more refill and then I will need to contact Dr. T. again to update him and decide what to do. Those who are using Biaxin, how long have you been taking it and what are your plans? Gains have been good though some back sliding this past week or so. He's had a really runny nose which I think is allergies because I've got them pretty bad myself. His mood has stayed overall dramatically better, though he still has a few cranky moments. He's doing much better in school too. Many of his OCD and tics are gone but those that remain are still very strong. I guess I'm not expecting 20-something days on abx to completely fix it all. I wish! I've added a new supplement called Wellness Formula from Source Naturals. It has a combo of herbs, antioxidants, vitamins and minerals that are supposed to help balance out the immune system. I'm hoping that it will help transition to a smaller dose without a relapse. We'll see. Link to comment Share on other sites More sharing options...
momaine Posted March 31, 2010 Report Share Posted March 31, 2010 My dd has been on Biaxin for 5 weeks and we just got a new script for 30 days. Since she started the Biaxin and steroid bursts, she's been doing the best she's done since last fall, but at this point I still don't know if its the Biaxin or the Prednisone. It has been easy on my dd's stomach as long as she has her Culturelle. Angela Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted March 31, 2010 Report Share Posted March 31, 2010 I forget, who do you see? My dd has been on Biaxin for 5 weeks and we just got a new script for 30 days. Since she started the Biaxin and steroid bursts, she's been doing the best she's done since last fall, but at this point I still don't know if its the Biaxin or the Prednisone. It has been easy on my dd's stomach as long as she has her Culturelle. Angela Link to comment Share on other sites More sharing options...
momaine Posted March 31, 2010 Report Share Posted March 31, 2010 Dr. T I forget, who do you see? My dd has been on Biaxin for 5 weeks and we just got a new script for 30 days. Since she started the Biaxin and steroid bursts, she's been doing the best she's done since last fall, but at this point I still don't know if its the Biaxin or the Prednisone. It has been easy on my dd's stomach as long as she has her Culturelle. Angela Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted March 31, 2010 Report Share Posted March 31, 2010 If he ever returns my calls I will ask him about renewing the Biaxin. It seemed to work well for my son too. I see him starting to slip. Dr. TI forget, who do you see? My dd has been on Biaxin for 5 weeks and we just got a new script for 30 days. Since she started the Biaxin and steroid bursts, she's been doing the best she's done since last fall, but at this point I still don't know if its the Biaxin or the Prednisone. It has been easy on my dd's stomach as long as she has her Culturelle. Angela Link to comment Share on other sites More sharing options...
tired mom Posted March 31, 2010 Report Share Posted March 31, 2010 We just finished a 30 day 1000mg biaxin. Don't know where from here. We see Dr. T also. Link to comment Share on other sites More sharing options...
Suzan Posted March 31, 2010 Report Share Posted March 31, 2010 If he ever returns my calls I will ask him about renewing the Biaxin. It seemed to work well for my son too. I see him starting to slip. Dr. T recommended Biaxin for my dd too but I never heard back from him either I made sure to offer to schedule a quick consult to make it official since he has seen my dd's in his office but he never responded. Susan Link to comment Share on other sites More sharing options...
Suzan Posted March 31, 2010 Report Share Posted March 31, 2010 We are a few days into our 3rd course of full strength Biaxin. Is Biaxin something he can stay on full strength for a long time like the "Sammy Dose" of Augmentin? or do we need to go to a prophylactic dose soon? We've got one more refill and then I will need to contact Dr. T. again to update him and decide what to do. Those who are using Biaxin, how long have you been taking it and what are your plans? Gains have been good though some back sliding this past week or so. He's had a really runny nose which I think is allergies because I've got them pretty bad myself. His mood has stayed overall dramatically better, though he still has a few cranky moments. He's doing much better in school too. Many of his OCD and tics are gone but those that remain are still very strong. I guess I'm not expecting 20-something days on abx to completely fix it all. I wish! I've added a new supplement called Wellness Formula from Source Naturals. It has a combo of herbs, antioxidants, vitamins and minerals that are supposed to help balance out the immune system. I'm hoping that it will help transition to a smaller dose without a relapse. We'll see. Good luck with it all. I'll be intererested in hearing how you feel about the Wellness Forumla. I've looked at that before. Allergies are hard on my kids too. I'm glad the biaxin has been helping. Susan Link to comment Share on other sites More sharing options...
kcdc3 Posted March 31, 2010 Report Share Posted March 31, 2010 We too, have been on Biaxin for 30 days. We ran out on Friday and I can not (also) get in touch with Dr. T. I am not sure if there is a proph. dose of Biaxin as in the past Dr. T had mentioned starting my dd on a proph. dose of Zith. I will say that we have come leaps and bounds in the past 30 days to almost 100%. We are at around 85 -90%. I am thrilled with that. I would like to go 10 more days at least, or at least have it on hand should I see her start to backslide. She did tell me last night that the past few days have been hard. That would coincide with stopping the Biaxin. I know he's been working on this "Saving Sammies and Samanthas" appearance.....If anyone gets in touch with him, please let him know that he has several "Sammies and Samanthas" that still need him. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted March 31, 2010 Report Share Posted March 31, 2010 So happy your d is doing much better. The Biaxin was helping for my S too. He was only on it 10 days. I can imagine what 30 days would do. I don't understand how someone so helpful and knowledgeable can just drop the ball like this. It doesn't make sense. We too, have been on Biaxin for 30 days. We ran out on Friday and I can not (also) get in touch with Dr. T. I am not sure if there is a proph. dose of Biaxin as in the past Dr. T had mentioned starting my dd on a proph. dose of Zith. I will say that we have come leaps and bounds in the past 30 days to almost 100%. We are at around 85 -90%. I am thrilled with that. I would like to go 10 more days at least, or at least have it on hand should I see her start to backslide. She did tell me last night that the past few days have been hard. That would coincide with stopping the Biaxin. I know he's been working on this "Saving Sammies and Samanthas" appearance.....If anyone gets in touch with him, please let him know that he has several "Sammies and Samanthas" that still need him. Link to comment Share on other sites More sharing options...
wornoutmom Posted March 31, 2010 Report Share Posted March 31, 2010 If it's any consolation, I have been trying to get Dr L to call me back for 2 weeks, with no luck. I think there are not enough hours in the day for these docs seeing so many new cases. Link to comment Share on other sites More sharing options...
momaine Posted March 31, 2010 Report Share Posted March 31, 2010 This is what I suggest if you need a prescription from Dr. T. It is what I do and he always gets back to me. I title my email, "Need Script Filled by Wednesday" (or whatever day) Then I write my daughter's name, date of birth, pharmacy number, and exactly what the scripts are that I want. It makes it so he has everything at his fingertips so he can just make the call. He doesn't have to go look it up. He is working alone and likely it is overwhelming. It's frustrating when he does not respond so I make it as easy as I can for him. He has done so much for my daughter. It must be completely overwhelming working alone. The easier you make it for him, the more likely you will hear back quickly. Angela Link to comment Share on other sites More sharing options...
kcdc3 Posted March 31, 2010 Report Share Posted March 31, 2010 Oh yes, I completely agree. He has been great at getting back to us promptly and that was one thing that I was so impressed about....this lack of contact has only occured over the past 2 weeks. My problem right now is just getting our lab results. We are okay right now without the medicine, but that could change any day!! I'm sure it's overwhelming working alone and I'm not belittling that at all. It's just that we've had weird things pop up in my non-pandas children over the past week or so that the labs may explain (it was a whole family lab draw). Waiting is so hard.!!!!!!!!!!!! When you are waiting on something it makes the days seem much longer and I guess the fact that I'm waiting makes the 2 weeks seem like 2 months. Link to comment Share on other sites More sharing options...
Lilyma Posted April 1, 2010 Report Share Posted April 1, 2010 Oh yes, I completely agree. He has been great at getting back to us promptly and that was one thing that I was so impressed about....this lack of contact has only occured over the past 2 weeks. My problem right now is just getting our lab results. We are okay right now without the medicine, but that could change any day!! I'm sure it's overwhelming working alone and I'm not belittling that at all. It's just that we've had weird things pop up in my non-pandas children over the past week or so that the labs may explain (it was a whole family lab draw). Waiting is so hard.!!!!!!!!!!!! When you are waiting on something it makes the days seem much longer and I guess the fact that I'm waiting makes the 2 weeks seem like 2 months. I am in the same boat. Not sure why Dr. T isn't responding. I have 11 more days of Biaxin left. I just filled the second script of ten days on my own as I did not here from Dr. T. My son's tics have returned and they are really bothering him. I have asked Dr. T for his lab work a few times, but with no reply. My son's moods have stabilized, but his tics came back this week. I feel so helpless and bad for him. I will try to boost his immune system with vitamins and hopefully this is just a little bit of a back slide. Dr. T said this would help with his tics, it did a little, but they are back. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now