The Age of Reason

Could we actually be getting somewhere?  Could we finally hit an age of reason . . .

Email 10/4/13

Ultrasound - abnormal blood vessels and wrong blood flow - really thinks that this is due to the spleen being so large.  Monitor this.  No need right now to get another ultrasound but will follow up with this condition in 3 months.  

ALPS - blood will be taken and sent to the Children's Hospital in Cincinnati.  It was never run before as he had tested negative for rhuematoid arthritis and diabetes but this just may have morphed in another way....the arthritis and diabetes could be problems in the future if he has ALPs among other autoimmune issues.  This could explain the spleen and platelets.  It is very rare. 

Spleen removal was discussed a good bit this time around.  He feels that if we cannot get the spleen to reduce we will really need to focus on its removal.  We will discuss this at greater lengths in 3 months when the spleen gets technically measured again...and if ALPS shows up it would be top on the list for treatment to try and stop the other issues (diabetes, etc.) to overtake his body.  

Diarrhea is probably toddler issues...quickly asked if he drinks too much juice...nope, doesn't drink any as we had been instructed to not give him juice for many problems this could cause.

Again, they will present his case to the tumor board where the radiologists will be present.  As my sister said, hope that one of the radiologists will just stand and raise a ruckus that this boy has been presented several times within 2 years and nothing has changed but getting worse within the size of his spleen.  

Wish I had more to say but this is where we stand currently.  I am sending the MUSC doctor a similar email and await her response.  She really is discouraging the spleen removal until we can find out what is causing the problem so as not to remove an organ that can help us figure out what is wrong.  We eliminate the one thing that is giving us direction and he continues to not be better we have nothing to help us discover what is truly wrong.