So many times, I've heard parents of kids with special and complex medical needs say that they need a case manager. I can certainly relate. The good news is that there's resources out there for parents like us.
It became apparent early on with Bean that we would be juggling a number of specialists and therapists. It was cumbersome keeping track of doctors and the frequency of tests and appointments.
Shortly after receiving his Williams syndrome (WS) diagnosis, his pediatrician referred us to the Diagnostic Referral Group at the Children's Hospital of Pittsburgh. We were overwhelmed with a list of doctors we needed to see and tests that needed to be done (and then repeated at certain intervals) and the DRG has been a life saver.
The doctors in this clinic have two purposes:
1. general healthcare management for children admitted to the hospital
2. managing the care of children with complex medical needs.
Fortunately, Bean has never been admitted to the hospital over night but he does certainly fit the second category and it will be helpful if he is ever admitted that we are established with this group.
Bean still goes to his pediatrician for general well baby care, immunizations and simple sick visits but his doctor in the DRG oversees his care with other specialists. She helps me keep track of when he needs to be seen and who he needs to see. She oversees all of his test results and makes referrals to new specialists if/when needed. She also helps me to get appointments when it is hard to get in with a specialist. She is amazing and for all intents and purposes, she is Bean's medical case manager.
Wouldn't it be great if doctors like this were available to all families of kids with special and complex medical needs? The good news is that many children's hospitals have similar services. I did a quick search and found a couple:
The Diagnostic Center at Children's Hospital of Philadelphia
The Diagnostic Center at Children's Hospital of St. Louis
and I'm sure there's many more out there.
To look for services on your hospital Web site, look for words like "diagnostic," "referral service," and "complex care" or call your hospital's general information number and ask. If your hospital doesn't have a similar service, you can ask your geneticist or lead physician to act in a similar capacity.
Another resource is that every hospital has a Social Work department and they can help you navigate the hospital system.
And one other thought that will make your trek though many doctors more organized and productive is to keep a notebook/binder with all important documents/notes/tests/dates/etc. and I also carry a single bulleted list of all diagnoses, tests, results, doctors, therapists and phone numbers. The docs love this and it makes appointments so much more focused and productive.
For specific genetic conditions like WS and other developmental diagnoses, clinics exist where you can go and see all the essential specialists and therapists in a one or two day trip. There are WS clinics in Boston, Cincinnati, Columbus, Philadelphia, San Diego, Bronx, Buffalo, and Salt Lake City. We are considering getting Bean established at one of these clinics soon so that we can consult with people that specialize in WS. Contact information for each clinic can be found at the Williams Syndrome Association Web site.
In the meantime, I have been very pleased with the standard of care that Bean has received at Kids Plus Pediatrics and his various specialists at Children's. It has all been made easier since we have received the coordinating services of the Diagnostic Referral Group. I certainly recommend looking in to similar services in your area. Having a case manager makes it all more, well, manageable.