Update #4

We had our appointment with Dr. Torkildson, the hematologist, today. He was very nice and very knowledgeable just like his staff had said he would be. Unfortunately all of the lab results were not in yet so we have to meet with him again next Monday.

At this point we know that Jack has Von Willebrand but we don't know what type yet. This is the part of the lab that is still pending. He probably has Type 1 based on the labs we have so far but his abnormal platelets and low platelet count would not be a part of that. The doctor explained that he may also have what is called ITP (immune thrombocytopenic purpura) in addition to the Von Willebrand. This is an auto immune process that usually goes away in a few weeks or months. This ITP may be why his bruising has gotten worse more recently and why we found out that he has the Von Willebrand in the first place. Usually this is not diagnosed in children until they have a major surgery like a tonsillectomy which causes a large amount of bleeding. Type 1 patients usually do not have clearly impaired clotting and most patients usually end up leading a nearly normal life. Trouble may arise in the form of bleeding following surgery, noticeable easy bruising, or heavy periods (we are hoping this one is not a problem for Jack!).

If it is Type 2 then it would explain the abnormal and low platelets since this is normal for Type 2. There are two different subtypes of Type 2: Type 2A is where the building blocks that make up the factor (called multimers) are smaller than usual or break down too easily. Type 2B is where the factor sticks to the platelets too well. This leads to clumping of the platelets, which can cause a low platelet count. The outcome for these patients is the same as for Type 1 except that there is a bleeding tendency that varies between patients. The doctor said that this can be a problem if Jack was having surgery or in a major accident.

Were not sure yet what he will do if it is either type because there are different courses for each one. We do know that the doctor will be testing both Larry and I for it to see if we have it. If one of us does, they will test Addie when she is one or two years old as she will have a 50-50 chance of having it. Although we don't want there to be something wrong with our little man, both Larry and I are relieved that we have an answer for why his labs were abnormal and why he has had the bruising. It will be nice to know what types and where we are going to go from here. Thank you all for your positive thoughts, prayers, and listening ears. It has been very emotional for us and we are so lucky to have loving family and friends to support us along the way.