Communication with Dr. K?

[IrishMom]

Hi all, we had our first phone consultation with Dr. K on Dec. 22. Our daughter was on a 2-week duration of augmentin.

while we’ve seen big improvements, we are still awaiting the detailed email Dr. K promised us the weekend following our Dec. 22 call. I’ve emailed him 5-6 times since then and have spoken to his office several times. They are apologetic and promise to speak with him. I’m at a loss here as he seems totally to be ignoring us. We’ve faxed blood work to his office too. Not a word from him. I did go ahead and set up another call with him with his office but feel really uncomfortable sending more $ to him when we a. haven’t heard a single word from him and b. are still awaiting his detailed notes from our initial conversation. I know he is a renowned doctor, but it seems he either can’t or won’t communicate. Any advice? I feel like we just got to him and now are considering needing to find another dr.

thanl you — Kelly 

[ABdualPT]

Dr K is eccentric to say the least, but he is absolutely brilliant, has been treating children with PANDAS since 1998, and watching him interact with his patients is nothing short of amazing.  My son was diagnosed with PANDAS in August 2017. The doctors in our surrounding area in WAshington State  did not have expertise in the treatment of PANDAS. With our son’s abrupt, scary, and intense onset of symptoms, I wanted to take him to a expert in the field. After sleepless nights reading peer reviewed journal articles and researching pediatricians, I emailed Dr K. and asked if we could skip the consultation and come directly to Oakbrook, IL for an office visit/consultation and IVIG treatment. He was amazing! While his communication style with adults is somewhat abrupt and slightly offensive at times, watching him interact with his patients is really wonderful. My son adored him. Dr. K’s prognosis and timelines were spot on. He was familiar with all of the current research, has a wealth of experience and could answer all of our questions concisely. The IVIG treatments were well organized, the staff members were compassionate and impressive , and the whole process was seamless. The follow up has been adequate: Dr K. only replies if there is something pressing or urgent (you need to write  “Urgent” in the subject line,) but we have followed all of his post care instructions and the outcomes have been just as he described they would be. His emails are usually only 1 or 2 liners, but they tell you everything that you need to know. He saved our son and our family.

[IrishMom]

Thank you so much, abdualpt.

I'm so glad to hear that your son is improving -- what a relief! My issue isn't that he's eccentric or wrong (we've seen big improvements in just the 2 weeks our daughter was on Augmentin!). It's that there's been zero communication from him, after he promised us a detailed email for our daughter's protocol on Dec. 22. His staff is so nice, but just keeps saying to email him again and again. I'm now at 7 emails in 3 weeks without a single word on from Dr. K -- not a simple acknowledgement of the emails or the protocol guidance he said he would put in writing to us the weekend after that Dec. 22 call. With the first phone consult at $650, we're still not seeing what he promised and what we need for our daughter. She is in no way out of the woods. I really don't want to try to find another doctor, but I'm not sure what my choices are at this point. She needs care and follow up. Feeling frustrated that he doesn't seem to care and we thought we established him as our daughter's doctor. We even, on that initial call, said we'd bring our daughter to Illinois to see him and he said that wasn't necessary. Any help out there? Thanks -- Kelly