David Jeffery Seveland

Well, I finally got some sort of an explanation about the pathology results.  The simplest explanation is that it is some sort of a Lymphatic malformation.  It is a group of enlarged lymph nodes with extra lymphatic tissue present.  It also has enlarged lymphatic vessels running through it.  We were told that this kind of a malformation is the most common type found in children.  However, it was almost twice the size of the standard malformation of this type.  Found on it's own there are no problems but because David has so many other issues and symptoms it is most likely the result of a bigger syndrome.  There is also a very good chance that he will get more in his neck and other places on his body as well.

It is not the common lymphatic malformation commonly found with KTS so that brings new questions.  The malformations most commonly found with KTS consists of a Lymph node or nodes that are filled with Lymphatic fluid not tissue.  These are usually squishy to the touch and David's was solid.  We have also been told in the past that we should expect any of these types of malformations to appear in his lower extremities.  This one was in his neck so that also brings new questions to the surface.  It is also very Odd that it showed up in his neck where there is no birthmark present.  So we are still confused. 

There is a new Syndrome that was looked at in the beginning and then crossed off our list.  Well it is now higher on our list.  It is Sturge-Weber Syndrome (SWS).  David had several mild seizures back in December and January that we noticed.  The entire body would tense up and he would get a very blank expression.  This would last for 30-45 seconds and we would have to help him relax the muscles in his right arm and hand because he couldn't.  This makes since with the left side of his brain being larger and the right side of his body being more affected.  We were told at the time that they were pain induced because he got 8 teeth in a 6 week period and there was nothing that could be done for them.  Now there is belief that they may have been a result of SWS.  The left side of his brain is larger than the right and he has a small venous angioma in the right frontal lobe, there is a birthmark that shows up on his right temple when he gets very angry, and his speech is delayed.  All of these symptoms mixed with the malformation in his neck lead us to SWS as more of a possibility.

We don't really know what to think at this time.  We have been told that we need to go see our Geneticist, Dermatologist, Neuroligist, and Vascular Specialist to find out what they want to do.  I don't plan on visiting any of them before the middle of August so I will keep ya'll posted.

Oh I also want to mention that David was just accepted into the school system for speech therapy.  YEAH!  We find out on August 12th exactly what the plan is and how many days a week he will recieve assistance.

Toodles, Amber