OK friends, we have an answer and I sure could use some help from the medical Crazies here.<br /><br />TJ is suffering from a rare platelet disease called Delta Granule SPD (storage pool deficiency).  It is an inherited disease but we don&#39;t know where it came from.   Deb never had any problems.   There is also a very good chance that Ashleigh is also affected but in girls it usually does not show up until they hit puberty and get their period.     There is no cure but it can be treated medically but only when he is actually having a bleed.    It is treated with a nose spray which has some scarey side effects and can only be used once every 24 hours and for not more than 3 days in a row.   (Over Memorial Day weekend he had 7 major bleeds so it is up to Deb &amp; Mike to figure out when to use the spray and when not to).   The spray comes is a 1/2 Oz. bottle which costs &#036;800 - no that is not a typo - &#036;800 for that little tiny bottle.  Once the spray is used he should stop bleeding immediately - he also will stop urinating as usual  for 24 hours.   During this time he has to be very closely watched and cannot consume more than 42 oz. of fluid or he is apt to have seizures.  Not good news to a little boy who spends half his day at the water dispenser on the fridge.     Now it&#39;s up to his Cardiologist who was very upset about this medication and isn&#39;t sure he wants TJ to use it.   He does realize that this can&#39;t be left untreated and his platelets can&#39;t  drop too low.   <br /><br />As far as follow up no more blood work for 6 months which is good news but his counts will have to be watched very carefully.   <br /><br />Guess it&#39;s time to go do some research and see what I can find.  In the meantime if anyone has any information, I&#39;d be very appreciative.   <br /><br />Thanks for your prayers and good thoughts.   I guess I am feeling a little better that  at least we have an answer.