Hi meemshutchins,

I am sorry that you feel that you are not being treated fairly by Dr. Afrin.  I can't judge his behavior towards you for I was not present in any kind of personal interaction with you.  All I can say is that my personal interaction with Dr. Afrin has shown me that he is quite the opposite of what you are saying.  I've not seen him in person, however, but have had some extensive conversations with him through the internet.  Yet, I have also had similiar conversations with Dr. Akins, Dr. Castells and several of the other masto authorities both in the States as well as in Europe and I have found that although all of them are extremely busy doctors and have little time, they show me the very same consideration which Dr. Afrin has shown to me.  I have not found a single one of them to be rude.   Yes, they are cut and dried and that's because they are each extremely busy physicians and researchers with a heavy load to carry because they are also, the vast majority of them, university professors as well as on the boards of different societies or running their own research centers or laboratories.   If Dr. Afrin was indeed rude to you then you may have caught him on an off day, but even then, he may be responding to your own attitudes.   I have noticed that I will sometimes get a bad response from a doctor who doesn't know me and doesn't understand what I am seeking for and so I have to consider my own behavior as also what may trigger bad feedback.  

That being said, I have to say that you are expecting Dr. Afrin to step outside of his legal abilities to make a statement as to your daughter's situation.  He can not make any kind of judgement calls as to a pediatric patient.  I have spoken with him for another mother and he took the very same stand regarding that child.  This is not his area of specialty and can not make any kind of judgements since he is not specialised or trained to work with children.   What you are asking him to do goes against the laws and you are asking him to endanger his career and his ability to practice medicine.   This is just not right.  He does not have any pediatricians who are working with him and he can not work with these doctors unless they are willing to work with him and study with him about MCAS in children.   I spoke with Dr. Luis Escribano about MCAS in children and he told me that this is a very rare condition indeed!  It is seen in adults but in children they don't know how this form shows itself and to begin treating a child is a dangerous thing.   Children are not adults in miniature, their systems are much more delicate and finely tuned than that of adults and what you are asking of Dr. Afrin puts him at risk of not just a malpractice lawsuit but could possibly put him at risk of losing his right to practice medicine.  It is unfair of you to ask this of him and even rude on your part to not understand this and respect his stand on this.  This is why Dr. Castells is your ONLY choice for help for she does have pediatricians who can and do work with her.  Dr. Castells has what Dr. Afrin does not, a reference center.  This means that Dr. Afrin works alone while she does not.  Dr. Castells has a group of doctors who work together with her, Dr. Akin is her partner as well as Dr. Greenberger, a gastroenterologist.  She has also cardiologists, pediatricians as well as pathologists and various other specialists like biochemists, etc,  who are specialists in mast cell disorders and mast cell biology.  They are who are best equipped to take a good look at your daughter in the safety of a hospital environment.  


meemshutchins wrote on 04/16/13 at 14:12:47:


Now as to this last comment, this was not nice.  I don't often make such a strong statement and I did try to explain to you previously that you have asked too much of Dr. Afrin, but what you are saying here, and you did say something but in an implying manner, is that the drs at MUSC won't work with Dr. Afrin because of some underlying problem.  This is highly unfair for you are insinuating that there is something wrong when you have no basis for this remark.  You are obviously disappointed in that he didn't fulfill your expectations and for that reason you are angry with him.  The problem isn't his, however, for he has worked with many other patients and they have found him to be a very qualified physician.  He may have a personality you don't like but this is no excuse to insinuate things of this manner just because he refused to make a comment on a patient he is unqualified to treat.  If anything this shows the intergrity of a very capable doctor in refusing to treat a patient whom has no business treating.  If he had done something to help your daughter and it backfired you would be in front of the very first lawyer you could find trying to sue the shirt off of a very qualified doctor but because he didn't do as you wanted, you begin to slur his name.   This is just plain wrong!   I understand your disappointment, but this is not right to get vindictive.   Instead you should be thankful that he has such concern for your daughter that he would not put her into harm's way in spite of your begging him "for the thousandth time".   I am rather impressed that he even bothered to speak with your immunologist knowing that you were constantly pressing him to do that which he is unqualified to do.


As to having an "in", I think that your doctor is likely the best means of getting one and I would suggest that he write an email to Dr. Castells explaining your daughter's case and having him personally ask her to open up a spot to see your daughter.  


Lisa