Leaving UCLA

Los Angles Children's Hospital Lobby

I've always considered ourselves lucky because of the fact that we live relatively close to renowned hospitals like UCLA, Cedars-Sinai and LA Children's Hospital. I thought: people from all over the globe fly to these Institutions to get better care and treatment and we just drive on the 405 to get there. How great is that? Unfortunately, not everything is great - I am not entirely pleased with our experiences from these institutions.

We stopped going to Cedars-Sinai when the Geneticist we were seeing there made us wait for three hours. We ended up leaving without being seen and after we've paid our co-payment. I reported the incident to their client service department but I didn't stay long enough to find out what came out of my complaint.

I've always been vocal of my discontent about UCLA Dermatology Department's service. It is extremely difficult to get in touch with them even on urgent issues. Not one of my calls were returned. And when I raised this issue to Dr. C, the main Derm, he told me he is best contacted through email. We did get one reply to the dozens of emails we sent to him. In order to get an audience, we had to get an appointment.

Being a teaching hospital, we get different team of fellows/residents who see us before the main doctor comes in. Consequently, we have to repeat Bambino's entire "skin story" to these fellows who we jokingly called "minions" every time we go for a visit so they can brief the main Derm. The main Derm is well acquainted with my baby's issues. He has been his primary Dermatologist ever before he was diagnosed of NS. In fact, after his diagnosis, Bambino became some sort of a cause celebre at UCLA. We've been invited to a couple of their grand rounds attended by dozens of doctors. We welcomed the attention, hoping that one of those 85 dermatologists who have seen him might be able to offer Bambino a real relief from his sufferings.

Not quite. They thanked us for coming and none of them returned our calls.

Don't get me wrong. I think they are all brilliant doctors. They are probably just too absorbed in other things in their residencies to bother with just one rare genetic "orphan" disorder. They saw how NS manifests, they saw the symptoms in flesh and blood - not just photos on thick textbooks anymore - and then they move on to other more common skin problems like psoriasis. There is nothing else they could do. Besides, cases like this would probably just make .01% of their future medical practices.

I have been tempted to switch to a private Dermatologists, but my Pediatrician pointed out that it will be difficult to find a Derm who will have the experience and skill my Bambino would require.

But I've had it with UCLA Dermatology.

Yesterday, we went to see the Dermatology team at Los Angeles Children's Hospital headed by Dr. Justine Park. My husband warned me not to expect any better because this is indeed another teaching hospital, with residents coming from USC.

I laid it out straight to the first fellow wo saw us, Dr. Goli. I told the young doctor that we've been seeing UCLA Derm but that we are not happy with how they run things over there and that we are actually looking for doctors who will return our calls and won't tell us to call for an appointment when we have questions about trivial stuff like dosages. I told her that they are welcome to turn us away if they think things are not going to be any different around here. She seemed to sympathize with my concerns and she left to brief Dr. Park about Bambino's case,

Three other fellows came in with Dr. Park after a while. They were as curious as the residents at UCLA and ganged up on me and Hubby with questions. They've never seen an actual NS case before. They conceded that they cannot give us the "private practice" kind of attention that we are seeking but they did refer us to one of their USC professors who also volunteers at Children's but has a private office in the Valley closer to our place.

Before we left, we got another invitation to appear at a USC medical conference for "show & tell". They were a bit hesitant to ask us - our wariness of these institutions was probably evident in our faces - but I assured them that we still are very much willing to help out the dermatology field in any way we can.

Although an impossibility, who knows, one of these doctors will find a cure.