Direction needed once again

[kleek3]

Hello Friends,

 

DS4 was dx this year in October. We had him on Penicillin from June - October when we switched him to Azith due to Myco P in all 4 of our labs viewed by Dr. T. Neither the Penicillin nor the Azith put him into a "remission" so to speak. In Nov, Dr. T combo-ed the Azith and Penicillin and we saw a 50% improvement. I just refilled both scripts 2 days ago. I have reached out to Dr. T to see if maybe we could do a 10 day Clindomyicin trial bc I have a friend on this forum that has a child with a very similar presentation. The Clindo worked for them...why shouldn't we give it a shot? In the last week DS4's symptoms are in full force. The throat clearing is back with a vengeance, shoulder rolls, emotional liability etc. is all there.

 

Questions are: When you have a Dr. that you have developed a relationship with, and you reach out to talk about a med change...do you schedule an appt.? Do you communicate via email? How do you do this.

 

Secondly, I'm wondering if I need to be seeking a 3rd opinion? I have heard how important it is that if you get this early on...... So if anyone has personal experience with their Dr. and wants to PM, that would be great. The next step for us would be Dr. L. I want someone who is going to be as aggressive as I am in finding a comfortable place for our son. Thank you all for any thoughts!

 

KK

[kos_mom]

Clindamycin is not the best choice for myco p if that is the major concern for you now. Besides azithromycin I have heard minocycline works for myco p and there are no doubt others. Recently, there has been a problem reaching Dr. T. This may have been because he was preparing for his hearing before the NY Department of Health on Thursday. If you get no answer from email, you might try calling the office and saying you are having a flare and think you need a change of abx and see what they advise, perhaps a phone consult. You can certainly go ahead with Dr. L--many people get second and even third opinions and most of the doctors don't seem to mind this.

[kleek3]

Ko's Mom,

 

It is hit or miss with Dr. T. No doubt her is an AMAZING man. He has changed our world:) Maybe the answer is to just ask him or his office staff how I go about changing meds before switching to yet another specialist. I just feel like we could be a little more aggressive and am being impatient! Thank you for your words of wisdom!

 

KK