Well, our genetic is stumped and was very honest in telling us she doen't know what to do next. She contacted another doctor at Maryland University and asked her to see us, but that doctor said no, that she didn't feel like she could offer us anything either. So, our doc called a Dr. Andrea Gropman at DC Children's and they said they would see us but it would be after the first of the year before we could get in. So, anyone ever seen Dr. Gropman?

She's a neurologist, but does metabolic stuff too. Our doc wants us to see someone who can look at the whole picture of the kids, not just our neuro looking at neuro stuff, and her looking at genetics.

The doctor who wouldn't see us did say she would put together the information on the kids and circulated it around her contacts.

We just started going to Children's National Medical Center DC as we moved to VA in July. We are 37 miles from there. Traffic is horrible - it is right in heart of DC - so make sure your appt. time is somewhere between 1030am and 2pm to hopefully get there after rush and leave before. You can use HOV lanes for 3 or more passengers which helps when they're open.

So far we are really impressed with the NS team, and the neurology is good too (we see Gaillard) - but ours in particular was not good with communication during our post-sleep deprived EEG crisis last week. He did finally speak with me at length - but it was after things were pretty settled this week.

I feel like it is a great place to be though. ONLY chilren seen there which is nice. There are 21 peds neuros on staff which is fab. It is rated 6th for neurology in the nation.

So go for it - they surely have the means there. They are renovating and it will only become more state of the art than it is from here on out.

Hugs,
Kathleen