Thursday, April 1, 2010

Atlanto-axial Instability

Last week, Logan had x-rays done on his neck to check for atlanto-axial instability because we want to take him to hippotherapy. Hippotherapy promotes the use of the movement of the horse as a treatment strategy in physical, occupational and speech-language therapy sessions for people living with disabilities. Hippotherapy has been shown to improve muscle tone, balance, posture, coordination, motor development as well as emotional well-being. Logan needed the x-ray before starting therapy.

Atlanto-axial instability or AAI describes an increased flexibility between the first and second bones of the neck. Most individuals with Down syndrome have some increased flexibility of joints, called ligamentous laxity, which can affect any of their joints. AAI refers to this condition when it affects the joint between the first and second cervical vertebrae. Since the vertebrae surround and protect the spinal cord, instability of the joint could place the spinal cord at risk for injury.

85% of individuals with Down syndrome have no evidence of atlanto-axial instability. 13-14% show evidence of instability by x-ray only and have no symptoms. This is called asymptomatic atlanto-axial instability. Only 1-2% have symptoms that may require treatment. These individuals are referred to as having symptomatic atlanto-axial instability.

Symptoms may include neck pain or persistent head tilt, intermittent or progressive weakness, changes in gait pattern or loss of motor skills, loss of bowel or bladder control, increased muscle tone in the legs, or changes in sensation in the hands and feet.

I was told today, by Logan's doctor's nurse, that Logan has AAI, but she couldn't give me any other details. I asked if he can do hippotherapy or what restrictions he will have for physical activites, but she didn't have any information for me. She is supposed to talk to Logan's doctor and call me back.

I wish I knew more! If anyone has had experiences with AAI please contact me.

I am sad that Logan's physical activities may be limited. He wants to tumble in gymnastics and I was looking forward to getting good x-ray results so that he could start doing those things in his class.

I hope to get some answers soon, or I will be contacting other doctors who are more experienced with AAI and Down syndrome.


Tina said...

how unnerving that the nurse didn't have more information as to the type and severity of his AAl when she called. Hopefully you will get the answers you seek soon! We will keep you all in our thoughts and prayers!

Michelle Z said...

How scary - we'll be thinking good thoughts for Logan! Keep us posted what the dr says...

Anonymous said...

Oh no. That is so scary. I will be praying for Logan. Now I am nervous about Eric getting his....


RK said...

I don't remember if you're on DownSyn, Melanie, but there are lots of people over there who have great info about this subject... you'll want to know how big the gap is, as some activities will be determined by that--like how severe it is. Braska's buddy Jack has AOI, which is similar but it's the top of the spine versus the vertebrae a few down.

Hopefully it's not too large a gap, though it's a bummer if he won't be able to do somethings, of course.

Also, some docs don't put alot of stock into a measurement before age 3, (if I remember right he's not quite 3 yet, right??) so it might be good to plan on redoing the xray right after he turns 3 and see what it looks like then.

sara p said...

hey mel,
i hope you find all the info that you need, in my heart i have this feeling that logan is going to still be able to do all of things he wants to.... my heart is usually right:)

Anonymous said...

Get in touch with Renee Garcia
"Life with my Special K's"
Her daughter Kennedy had surgery for that at the Shriners in Philly

c is lower case

Anonymous said...

A few years ago my son, who was at the time 11 years old, was diagnosed with an instability in his neck. It was not however an AAI. We were referred to a neurologist in Milwaukee where they did a CT scan. This doctor determined that it was not severe enough to limit my son's activities and he was able to participate in Special Olympics. We were followed by this neurologist for I think another year at which point the instability was no longer detected and we were discharged.

A doctor once told me (not the above neurologist) that AAI in kids with Down syndrome can, in his opinion, come and go. This doctor had seen x-rays of the same child(ren) taken at different times on the same day and the instability was there for one x-ray and then gone the next;and perhaps present again on a third film. He suggested not taking follow up x-rays at the same time of day as the original one(s). This doctor wondered if the instability varied throughout the day depending upon what the child was doing.