Neurologist visit 3-27-14

Wow... how time does fly! Time gets by you! Brennan had his follow up appt with Dr. Geller from his surgery on 3-27. That was also marking his 9 week post op. Hard to believe! His scar looks good but still itches and at times still hurts him.

During his visit Dr. Geller did a thorough exam on him. After further examination,  questions and answers, Brennan is showing signs and symptoms of Ehlers-Danlos syndrome. He stated because he is not a geneticist he can not be certian and directly make the diagnosis but he definitely has what you would see in EDS hypermobility.  What is EDS? Ehlers-Danlos syndrome (EDS) is an inherited condition that affects the connective tissues in the body. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. It is made up of cells, fibrous material, and a protein called collagen. Ehlers-Danlos syndrome is caused by a defect in collagen production. This condition is caused by a group of genetic disorders. 

Symptoms of hypermobility EDS are:

• loose joints
• easy bruising
• muscle pain
• muscle fatigue
• chronic degenerative joint disease
• premature osteoarthritis
• chronic pain
• heart valve problems
• skin does not heal correctly

There is a vascular EDS but we will not know anything about that or any other issues until the genetic screening is done. Brennan has a few other symptoms that goes along with the hypermobility EDS. Also during our conversation he stated that looking at Chris and I he thinks that I may be the "carrier" of this because of my features and characteristics.  Yeah... this had me scared and thinking!

This is an underlying condition of Chiari. There is no cure.. just like Chiari. We also got a referral to start speech therapy at the hosptial. We asked Dr. Geller about some of the the other issues we have seen with Brennan. He stated they are all related to Chiari. We will have to deal with it. May not be easy but we will find a way. We go back in October for another 6 month check. I love how Dr. Geller is caring and understanding. He is staying on top of this.

April 22 we start the genetics screening. We will know for sure more detail of what is going on with Brennan. It will take 6-8 weeks before we get the results of the tests. July 21 he is scheduled for his MRI on his head, neck and full spine. They will compare his last MRI to this one. As for now.. we wait for the screening and just deal with whatever is thrown at us. Now that spring is here... we will be busy with Ty playing baseball. Poor B... he cant't play but he sure will be cheering on his big brother!