Going Dutch

This weekend we took Drew to a conference on his skin condition, CMTC.  I found a group online, CMTC-OVM that is pretty much the only organization in the world that knows anything about or is doing any research on CMTC.  It is based in the Netherlands and is associated with two doctors who specialize in vascular malformations, specifically CMTC.  They have one annual conference in the Netherlands and one in the U.S.  The U.S. conference just happens to be in D.C.--Tyson's Corner, more specifically, which is just around the corner from Wendy & Keith.  They were kind enough to take Tess for the day while we went to the conference.

We weren't really sure what to expect, and Ry had us ready to high-tail it out of there if they turned out to be some kind of Dutch scam artists, but it was actually really nice.  They catered to the kids and all the other parents and doctors were very nice.  Patients there had CMTC to varying degrees.  With some kids it was hard to tell they had the condition.  With the more severe forms, they seemed to have other conditions as well as CMTC.

We had a consultation with Dr. Maurice van Steensel, who is pretty much the world-expert on CMTC.  He looked at Drew's arm and reviewed the diagnosis we'd received from Dr. Lanpher at Children's National Medical Center.  He concurred that it appeared to be classic CMTC, which he said in most cases fades almost completely over time.  He said that any growth issues with affected limbs are present at birth and that Drew shouldn't have any problems since he is growing normally.  The doctor also said that Drew didn't really need to be seen by a dermatologist, as his skin is clearing up without problem.

We learned that their theory at this point is that CMTC is caused by genetic mosaicism.  This means that a DNA replicating error occurred sometime during cell division, and thus only those cells involved in the growth of the affected skin contain that error.  If that's the case, then there shouldn't be a concern that Drew might pass on the disease in a more severe form if he has children.  They are just starting genetic research to determine the cause of the condition.

So basically, it put Drew in the clear.  This condition is largely unknown by most physicians and often goes undetected or is misdiagnosed.  The doctor was very impressed with the quality of care Drew had received and that the doctors had done such an expert job in diagnosing him.

I'm not sure it's a conference we want to attend yearly or anything, but it was a good resource should I have questions in the future.  I know we have been very blessed and guided to know how best to help our little Drewsie.

And oh yeah--Drew sat up for the first time at the conference, so maybe he found it inspiring after all!  For your viewing pleasure, a few pics of life as we now know it:

Pretty darn blessed, aren't we?