A diagnosis i do not understand to well?

Question

My 10 month old has got this rash on his leg that we had to go to a specialist and see and they sent him for an ultrasound,the results to his tests came in in full detail and not just what i heard. he has a rare form of non-congenital portwine stain caused by trauma in the foot.there are only 60 known cases of it in the USA. the cause of this rare disease is either an IV being placed in the foot or severe trauma to a fall. has been found in a couple infants but the rest is usually wrestlers. he will have to definatly have it removed soon for it is continuing to grow and will continue to grow as he gets older. the ultrasound also read that he has Venus Prominant diastolic flow in teh right perifial and anterior fiberal artery. (blood flow is not flowing right through his foot causing the swelling in his foot and leg(plus the portwine stain causes swelling which explains why his legs are so huge) Now there is no definative arterial Venus fusion malformation identified but not sure if the reading they have may not match a pediatric patient and the report is conflicting each other so it has to be reviewed by a pediatric radiologists.....has anyone out there heard of this? any thoughts on it from anyone<a href="http://s300.photobucket.com/albums... target="_blank"><img src="http://i300.photobucket.com/albums/... border="0" alt="Photobucket"></a>

Answer 1

Although I cannot explain the diagnosis to you, I do understand what you are going through. My 5 month old has been diagnosed with torticollis and brachial plexus palsy (which means there is something wrong with the nerves running through her arm that caused partial paralysis of her left arm and makes her neck tilt at a 45 degree angle to the left). However, this is a birth defect caused by delivery and she was a planned c-section. This is not suppose to happen. They do not know why or how she has this and many of the tests have contradicted each other. If the radiologist cannot make sense of the ultrasound, different tests may be used. Because they cannot find where the vein is deformed from the ultrasound, they may have your son tested using dye to see how the blood is flowing and where it not flowing correctly. Until the test come back, there is not to much you can do. Right now, I am waiting for an MRI on my daughter to be done to rule out brain damage and defects in her neck/shoulder. It is really hard to have to sit back without knowing what is wrong with your baby. I wish you and your son the best of luck in the future.