My phone rings Thursday, December 1st, at 6 pm. It's the nurse practitioner calling from the rheumatology office. She's calling to inform me that our follow-up appointment is scheduled for January 9th. In the meantime, we should start rituximab for our daughter's refractory thrombocytopenia.
So sorry to hear that you, your wife and daughter and your family are going through this and that you didn't get satisfactory follow up. Wishing you all well on this medical journey.
So sorry you, your wife and your little girl are encountering such grade of lack of compassion from our counterparts in medicine. You are in my prayers.
I am sad to learn about your daughters condition and the things you had to go through. I agree, people in medicine should NEVER forget that they are dealing first and foremost With and FOR human beings. All too often the human aspect gets lost - something I just hate.
I so hope that you will make a way better experience at the Mayo Clinic and wish you the answers that will benefit your daughter - and give you the peace of mind that you deserve.
I hope she gets better soon but have sought any alternative advice. It’s hard when you work in med to think beyond the realm of prescription drugs but there are other viable options that may help. Wish her a speedy recovery & much peace mom/dad.
As a nurse practitioner, mother of 5 and parent of a child who had a rare disease, I feel for you on so many levels. Knowing the limitations of the system gives you a leg up on the many patients in the system who don’t even know what they can / should question and at the same time leads you to demand that the system function at an optimal level for YOUR loved one (as you would hope it would function for everyone’s loved one).
Mayo has been the shining light at the end of the tunnel for many people I know, the labs there were able to give us the definitive diagnosis of anti-NMDAR encephalitis for our daughter. Ultimately after plasmapheresis, steroids, and IVIG didn’t clear her “mild” case, rituximab was needed. But even with advocating parents and on-the-ball clinicians, it was still a months-long process requiring multiple hospitalizations, time out of work, rehab and extreme emotional distress.
I hope your family gets the active listening and attention you deserve from your next team. Parents know their kids best. Wishing you luck in your search.
So sorry to hear that you, your wife and daughter and your family are going through this and that you didn't get satisfactory follow up. Wishing you all well on this medical journey.
So sorry you, your wife and your little girl are encountering such grade of lack of compassion from our counterparts in medicine. You are in my prayers.
I am sad to learn about your daughters condition and the things you had to go through. I agree, people in medicine should NEVER forget that they are dealing first and foremost With and FOR human beings. All too often the human aspect gets lost - something I just hate.
I so hope that you will make a way better experience at the Mayo Clinic and wish you the answers that will benefit your daughter - and give you the peace of mind that you deserve.
I hope she gets better soon but have sought any alternative advice. It’s hard when you work in med to think beyond the realm of prescription drugs but there are other viable options that may help. Wish her a speedy recovery & much peace mom/dad.
As a nurse practitioner, mother of 5 and parent of a child who had a rare disease, I feel for you on so many levels. Knowing the limitations of the system gives you a leg up on the many patients in the system who don’t even know what they can / should question and at the same time leads you to demand that the system function at an optimal level for YOUR loved one (as you would hope it would function for everyone’s loved one).
Mayo has been the shining light at the end of the tunnel for many people I know, the labs there were able to give us the definitive diagnosis of anti-NMDAR encephalitis for our daughter. Ultimately after plasmapheresis, steroids, and IVIG didn’t clear her “mild” case, rituximab was needed. But even with advocating parents and on-the-ball clinicians, it was still a months-long process requiring multiple hospitalizations, time out of work, rehab and extreme emotional distress.
I hope your family gets the active listening and attention you deserve from your next team. Parents know their kids best. Wishing you luck in your search.