Most parents know that they can get a second opinion when they don't agree about child's care.
This second opinion might be with another pediatrician or a pediatric specialist.
With complicated or chronic conditions, you might even see more than one pediatric specialist as you try to get your child's medical problems managed.
But where do you go from there if you still aren't satisfied?
Not being satisfied doesn't mean that you are a difficult parent or that you have bad doctors. It might simply mean that your child has a difficult-to-treat condition, your child's current management is too aggressive or not aggressive enough in your opinion, or you just want to see if other options are available that aren't being offered to you.
Unfortunately, sometimes getting the type of care that fits the needs of you and your child might mean traveling some distance.
Where do you go?
It depends on what is wrong with your child, but here are some examples:
Help for Undiagnosed Diseases
One of the most frustrating things for both parents and pediatricians is a child with mysterious symptoms that haven't been diagnosed as having a definitive cause. This child has likely had a lot of testing done and has seen several pediatric specialists. She may have been given a different diagnosis by each doctor, or more likely, none were able to figure out what was causing the her symptoms.A multi-disciplinary pediatric referral clinic can be helpful in evaluating children like this, offering assistance to families who haven't gotten answers elsewhere. These clinics often review the child's previous medical records and testing. Then, a team of specialists examine the child, order new tests as necessary, and try to diagnose what is causing the child's symptoms.
Clinics that help evaluate children with undiagnosed diseases include the:
- Pediatric Diagnostic and Referral Clinic (PDRC) at the Mayo Clinic in Minnesota
- National Institutes of Health's (NIH) Undiagnosed Diseases Program
Pediatric Specialty Centers
It is likely that the children's hospital closest to you has pediatric specialists that are well qualified to take care of all of your child's needs. Still, there are some children's hospitals that are especially well known for being experts or leaders in taking care of specific medical problems.Some examples include:
- St. Jude Children's Research Hospital - for eligible children with "newly diagnosed, untreated or suspected cancer; HIV infections; or certain hematologic, immunologic, or genetic diseases," and "previously treated patients who have received treatment elsewhere may be accepted on an individual case basis when there is a potential for protocol eligibility on ongoing studies, relapse studies, bone marrow transplantation protocols or Phase I-II studies."
- Loma Linda University Children's Hospital for infant heart transplants
- University of Michigan Congenital Heart Center at C.S. Mott Children's Hospital, the Cardiovascular Program at Children's Hospital Boston, and the Division of Cardiothoracic Surgery at The Children's Hospital of Philadelphia for repair of complex congenital heart problems
- Children's Medical Center of Dallas for evaluation and treatment of children with hemophilia
- The Muscular Dystrophy Association Center at Johns Hopkins in Baltimore, Maryland
- National Jewish Medical and Research Center in Denver, Colorado for evaluation and treatment of allergic diseases, including eczema, asthma, and allergies
- The Vascular Malformations Center of New York and the Vascular Anomalies Center at Arkansas Children's Hospital for evaluation and treatment of vascular malformations and hemangiomas
- The Epidermolysis Bullosa Center at Cincinnati Children's Hospital Medical Center for treatment for children with all types of epidermolysis bullosa, a rare genetic skin condition in which affected children have very fragile skin and get blisters after minor trauma and even with routine things, such as sitting in a car seat
How do you find these specialty centers?
Your current doctors are a great place to start. Another place to look for advice on where to go for a second opinion or further care from a specialty center is a national organization or society that supports the condition. Lastly, you could look to see who is doing the most research on the condition or if many of the clinical trials for the illness are concentrated at one hospital or medical center. Leading researchers on a condition often have the most experience treating the condition and may be who you want seeing your child if he has a complex or complicated course, or you are having trouble getting him care.
Keep in mind that traveling for treatment is not usually an ideal situation and is not for everyone. As difficult as it is to travel with kids, it can be even more difficult to travel with a sick child. And if there is a complication once you get back home, your doctors won't be nearby for a quick return visit.
Still, traveling for care can be a good idea if you aren't happy with the treatment your child has been getting in your local area.
