For those of you who travel out of state for neurologists (Wong, etc)

Did you need a referral? What were your reasons for choosing him/her? How often do you travel for appointments? Anything else you'd like to share. I'm new to all of this. :)

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You would typically only need a referral if your insurance company required it. We chose to go to Cincinnati, because it was closest place that had a volume of patients and was using the multidisciplinary care model. There's many clinics using that model now, but lots of people still like to see the docs that started the concept. Another thing to consider might be establishing a relationship with a clinic that has experiene with clinical trials, or is trial ready. Not that you'd be excluded from participating in a trial if you weren't a patient at that site, but you'd already know the doc if you did ever go that route. We initally travelled twice a year for 2-3 day visits. Lately we've gone once a year, and done a visit with the local clinic in between - which is now also multidisciplinary and we like. I think it's good to have a local set of doctors, because over time it gets more difficult to travel, and some things are just much easier to do at home (like DME), or have to be (like PT). If you post what big city you live near, I'm sure you'll get some feedback on the clinics near you.

How recently was your son diagnosed?

Hi Tracey,

As Keith stated, the type of health insurance plan covering your family/son will be the factor whether you need a referral or not.  Even if you do not need a referral, speak with a plan administrator or case manager about such things as 'out of state service' and to learn if the doctors are 'in network'.  Many children are covered by state health insurance programs which do not cover services out of state except for emergencies or in situations where a form of treatment is unavailable locally.  Sometimes physicians are not in your plans 'network' and you will either be responsible for a higher portion of the bill and in some cases not covered.  Your insurance card should have a contact number on the back for you to call to speak with someone who can answer these questions.

Best to you and your family.

Brian

We are still waiting on his gene sequencing to determine Duchenne or Becker. Although, everyone has made it clear it is classic Duchenne. We live near Charleston, SC and also could go to Duke in NC as well. In Charlestin we are currently seeing an adult neurologist.
And by that I mean not pediatric. Apparently they do not have a pediatric.

Hi Tracey - I'm very sorry about your son.

Duke is a trial site for the GSK study on exon skipping. If you don't want to travel as far, I'm guessing that any neurologist who is experienced enough with Duchenne to run a clinical trial would be better than who you're currently seeing...

 

Best,

Mindy

Friend me on Facebook, I can connect you with a family in sc.

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