Well our first appointment for Boston has arrived & went! We had a meeting with carl's complete team! Genetics, Neurology, Hematology!
Genetics: well they took 2 hrs to come up with something close to what they think carls has and well they came up with Smith Magenis Syndrome! We will have to wait some time to get the results for the test! Lots of tubes of blood that they had to take! Also had to make appointments for cardiology and have his kidneys and liver checked because SMS patients tend to have defects in the heart, kidneys and liver!
Neurology: well they wanted to have him get a MRI and EEG! Not to mention full x-rays ultra sounds and all! Nothing like giving us 2 months full of appointments to get some answers!!
Hematology: given that Carl has had the test multiple times ya we had it again! Of course they gave us limits for him and all!
Follow up with the doctors will happen when all of the tests come back! So now we wait!
Genetics: well they took 2 hrs to come up with something close to what they think carls has and well they came up with Smith Magenis Syndrome! We will have to wait some time to get the results for the test! Lots of tubes of blood that they had to take! Also had to make appointments for cardiology and have his kidneys and liver checked because SMS patients tend to have defects in the heart, kidneys and liver!
Neurology: well they wanted to have him get a MRI and EEG! Not to mention full x-rays ultra sounds and all! Nothing like giving us 2 months full of appointments to get some answers!!
Hematology: given that Carl has had the test multiple times ya we had it again! Of course they gave us limits for him and all!
Follow up with the doctors will happen when all of the tests come back! So now we wait!