AAI Results

Yesterday, Logan an I went down to Children's Hospital to have his x-rays and MRI read by a neurosurgeon. She told us that the x-rays where very unclear, but may show a very slight case of AAI, but their quality make them fairly useless. Now, for the good news, the MRI was very good. Those pictures showed no significant abnormalities. The doctor gave us the ok to go ahead and do hippotherapy! She does want to see him once a year for the next several years to repeat the x-ray, because she wants to see if their are any changes as he grows. Best case, he will be cleared to maybe even do somersaults in his gymnastics classes someday! I was very relieved to get the pictures read by a very knowledgeable doctor. I feel very confident now that we got the right results!
So, for now, we just need to continue avoiding letting him put pressure on his neck (like somersaults) because his low muscle tone in his neck gives him less stability.

Sneak peak of our trip...

Dale and I celebrated our 10 year anniversary last week in Jamaica. Here's one little peak...it was amazing!

Closer to AAI answers...

The Down Syndrome Clinic of WI suggested that Logan have an MRI and then have the results read by a pediatric neurosurgeon.

So, tomorrow morning Logan will have his MRI in Green Bay and then Friday morning we will go to Children's in Milwaukee to get the results.

This is little Logie last summer...he was taking a few steps in the grass. This spring he is able to go anywhere outside without falling. Also, he is climbing the ladder up to our slide and can go down alone on his bottom and land on two feet!! He also can walk up and down hills outside. Last year, he would sit down at the just the site of a hill. Goes to show how far he has come!!!

Happy 18 Months Aubrey!

It's a little scary how much they look alike! Poor Aubrey still can't grow hair on top her head!

Logan

I can't get enough of this boy! You're the cutest Logan!

AAI Update

After several days of asking questions and getting no where....Logan's pediatrician decided to call the Down Syndrome Clinic of Wisconsin. At first, Logan's doc was not going to recommend hippotherapy, but couldn't give me any idea of the severity of Logan's AAI. So, I think he felt like he needed to know what is typically done following a positive x-ray for AAI. I'm not sure what will be recommended now, but the DS clinic told Logan's doctor to set Logan up for a sedated MRI and to have a neurosurgeon at the Children's Hospital in Milwaukee read the results.

If you are curious, this is what Logan's results said. (I have to say that Logan cooperated beautifully though!!)

Positioning is less than optimal as a result of poor patient cooperation. There are some findings suggestive of craniocervical assimilation. There appears to be a hypoplastic or absent dens allowing abnormal mobility at the C1-C2 articulation. Depending upon clinical circumstances, CT or MRI could be considered for further evaluation.

I am hoping to know FOR SURE, if we need to limit Logan's activities and if we need to have future exams of his neck.

Happy Easter!

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.