March 6, 2009

Mommy is flipping out...

Yesterday my mom and I took Regan for his annual X-rays to check his neck. This was the first time that he had ever had a procedure done where I couldn't be in the room.Remember, I'm pregnant!!! So my mom had to go into the room with him. When Regan realized that I wasn't in there he went running to the door screaming MEME!! I stood in the hall way and cried like a baby. I wanted so badly to be in there to help him but had to protect our little baby. It was horrible. When they finally opened the door he was still crying and I just held him and cried too. It was the toughest thing I've ever done to not be where he could make eye contact with me.

We go the call a few minutes ago that every parent dreads. The call that they found something and we need to see a surgeon. Regan has a fusion on C2-C3 and also has Atlantoaxial Instability. AAI occurs in appox 15% of children with Down Syndrome.

Here is some information about it from our favorite website

"AAI denotes increased mobility at the articulation of the first and second cervical vertebrae (atlantoaxial joint). The causes of AAI are not well understood but may include abnormalities of the ligaments that maintain the integrity of the articulation, bony abnormalities of the cervical vertebrae, or both.

In its mildest form, AAI is asymptomatic and is diagnosed using X-rays.....Symptomatic AAI results from subluxation (excessive slippage) that is severe enough to injure the spinal cord, or from dislocation at the atlantoaxial joint.

The neurologic manifestations of symptomatic AAI include easy fatiguability, difficulties in walking, abnormal gait, neck pain, limited neck mobility, torticollis (head tilt), uncoordination and clumsiness, sensory deficits, spasticity, hyperreflexia...and {other spinal cord} signs and symptoms. Such signs and symptoms often remain relatively stable for months or years; occasionally they progress, rarely even to paraplegia, hemiplegia, quadriplegia, or death. Trauma rarely causes the initial appearance or the progression of these symptoms. Nearly all of the individuals who have experienced catastrophic injury to the spinal cord had weeks to years of preceding, less severe neurologic abnormalities..

To say that I'm not flipping out is a lie. I'm worried sick. Not only could this limit Regan's acitivites as far as sports,jumping,and special olympics this could mean spinal cord injury for him. We go to the orthopedic surgeon at Childrens on the 18th. I'm ready to go now!! I need answers and so I'm off to look for information as to what we're facing.

2 people actually cared enough to comment on this:

Allison said...

Your son is precious! I hope that you get some comforting answers from the Ortho Surgeon regarding his treatment!

Glad you like my layouts, and thank you for the comment :)

New Girl on Post said...

Like Allison said I hope you get some good answers from the Surgeon. I'm so sorry that you are having to deal with this. I know that health issues are always so frightening.

P.S. I do love your blog!