Speaking of c-spine xrays

[Kristen]

Carter had one done at 2 and it was clear, but now I am hearing that he should have it at 3 or 4 again. Anyone able to substantiate this? We had ot get a new ped and his statement was he will certianly look into it, but no matter what it says, if we want it we got it (I like him ). I don't relish the idea fo giong through that again, tho, especially not for poor Carter. It was not fun for anyone. What do you all know bout it?

[momofrussell]

Kristen, Russell had to have one when he started school when we moved to MO. He was 4 and they needed it for PT. Would Carter's school ever request one? I just have heard that there are a lot of false readings when they are younger and you can get more of an accurate reading around 4 or so. I don't know why but from what I read and what some docs say, it's best to wait until 4 or around there.

If you've already gotten one, maybe you are home free!
Did your ped initiate the first one? Unless the schools need a more up to date one when Carter is a couple years older, or you want him in Spec Olympics, maybe you won't need to have him go through it again.

A.

[wrblack]

Believe x-rays before age 3 would not be considered diagnostic, would need repeat, maybe for school and probably for Special Olympics.

From Health Care Guidelines for Individuals with
Down Syndrome: 1999 Revision www.denison.edu/collaborations/dsq/health99.html
Orthopedic Disorders & Atlan-toaxial Instability (AAI): Ligamentous laxity is responsible for a number of orthopedic difficulties in individuals with DS. Interestingly, congenital hip dislocation is not commonly encountered. Hip dislocation is more often seen in the older child and the adolescent. Chronic patellar dislocation can lead to gait disturbances in the adolescent. Atlantoaxial instability is a term used to describe increased mobility of the cervical spine at the level of the first and second vertebrae. This condition is found in approximately 14% of individuals with Down syndrome. The majority of individuals with atlantoaxial instability are asymptomatic, but approximately 10% of these individuals with AAI (representing 1% of individuals with Down syndrome) have symptoms, which occur when the spinal cord is compressed by the excessive mobility of the two vertebrae which form the atlantoaxial joint. Symptoms of spinal cord compression may include neck pain, unusual posturing of the head and neck (torticollis), change in gait, loss of upper body strength, abnormal neurological reflexes, and change in bowel/bladder functioning.

Routine radiographic screening for atlantoaxial instability of individuals with Down syndrome is controversial. In a recent review, the American Academy of Pediatrics Committee on Sports Medicine and Fitness concluded that screening radiographs are of "potential but unproven value" in detecting individuals at risk from sports injury. Close clinical scrutiny and further study of this issue was recommended. However, these studies continue to be required for participation in Special Olympics and community programs in horseback riding, gymnastics, etc.

Currently, DSMIG recommends screening individuals between 3 and 5 years of age with lateral cervical radiographs in the neutral, flexed, and extended positions. The space between the posterior segment of the anterior arch of C1 and the anterior segment of the odontoid process of C2 should be measured. Measurements of less than 5 mm are normal; 5 to 7 mm indicates instability, and greater than 7 mm is grossly abnormal. The cervical canal width should also be measured. The interpretation of these studies should be performed by a radiologist experienced in this area. Individuals with Down syndrome who have not been screened may need to be evaluated prior to surgical procedures, especially those involving manipulation of the neck. These children should be managed cautiously by anesthesiology staff. The studies should be repeated, as needed, for participation in Special Olympics.

Children with borderline findings or abnormal films should be evaluated with a careful neurological examination to rule out spinal cord compression. Neuro-imaging (CT Scan or MRI) is probably indicated. Significant changes in a child's neurological status would necessitate evaluation and possible treatment (i.e, spinal fusion). Asymptomatic children with instability (5 to 7 mm) should be managed conservatively, with restriction only in those activities which pose a risk for cervical spine injury. Contact sports, such as football, wrestling, rugby, boxing, and recreational activities such as trampolining, gymnastics (tumbling), and diving, which require significant flexion of the neck, would best be avoided. It is unnecessary to restrict all activities.

We are no longer recommending repeat screenings at fixed intervals, inasmuch as the value of this procedure has not yet been confirmed in preventing injury. We strongly recommend careful neurological examination of the individual with Down syndrome, immediate attention to symptoms indicating neck or spinal cord problems (see above), and vigilance by ENT physicians and anesthesiologists during surgical procedures which may hyperextend the neck.

The editor understands that the Special Olympics Medical Advisory Committee is involved in clarifying the problematic issue of detection and prevention of spinal cord injuries. [For a recent review of the subject, see References, Section W, Pueschel (1998) & Cohen (1998).]

[justinsmom]

Yep, Justin had his done at age 2 prior to his T/A, he does need to have it redone next year when he is 5 to make sure.

[gavinsmom]

My son has one sceduled for one during his tear duct surgery on Jan. 11th, they have never been able to do one due to him not sitting still, what will this xray show exactly?

[lindy]

I have a question while we are on the subject... Jenna has to get a CT scan because her Xrays showed that she probably has the AAI thing. So now I am waiting for a referral for her. They want to sedate her.

Is that as bad as general anestesia? Has anyone else had a CT scan while sedated? Can someone tell me what to expect?

[Cathy]

Lindy,

Katie had an MRI under sedation for her AAI. It was a general anesthesia, they figured there would be no way she would sit still long enough to complete the test. She came through it fine. Her MRI showed no AAI even though her regular xray showed the possibility. Anyway, the hardest part for Katie was getting the IV in, she went through everything else just fine!

Hugs to Jenna and let us know how things go!

Cathy

I am always amazed at how different doctors and hospitals do things differently. CT scan as opposed to MRI? but whatever gets the job done I guess.

[wrblack]

Well, first to Gavin's mom, if you're lucky, x-rays of Gavin's neck will show the same thing as the x-rays of Dizzie Dean's head, taken after he was beamed while dancing off 1st base at Wrigley Field. Chicago newspapers next day proclaimed X-rays of Deans Head Show Nothing. But what they'll be looking at is the space between his first and second vertebrae, see www.ds-health.com/aai.htm
Now, as to Jenna's sedation, we've never done that to Charlie (Ds), only to his little brother (non-Ds) for an MRI. We discussed the possibility of getting Charlie an eye exam under sedation rather than taking him to a hospital for an examination under anesthesia. But Charlie's pediatric ophthalmologist said he didn't do that, give kids chloral hydrate in the office. I think there are trade-offs, and I'm just as glad that in Charlie's case, his eye doctor leaves this business up to anesthesiologists with the proper equipment in the right place, just in case anything should go wrong.
But with Robert, what the heck. He got chloral hydrate for an MRI at CHOP. Nurses said that he probably wouldn't like the taste and might spit some up. He was less than 12 months old at the time. Sucked the stuff out of the syringe, smacked his lips, and asked for more. Then he dozed off and stayed perfectly still in the big, noisy MRI machine, with an IV hooked up to give him "contrast," for a bit over an hour.
Guess who got to go inside the MRI room with him? But glad Lynn reminded me, after I gave her my watch and rings, to let her also hold my wallet with credit cards.
Anyway, Robert woke up quickly as soon as we got him out of the machine. Knocked down a bottle of EBM (expressed breast milk) and got the thingyens outa there, no ill effects.
Chloral hydrate, or something along those lines, to sedate Jenna for a CT scan sounds about right to me. Hope she takes to it willingly, though doesn't need to be as eager on the stuff as Robert was. Would also hope this is all going to be done in a well equipped and well staffed medical facility; doesn't have to be a hospital nor a children's hospital, but I think that would be good. I'd also want her kept for observation for more than ample time to make sure she has no problems nor ill effects.
As usual, just mine own humble opinion.
Regards,
Bob

[Cathy]

Rofl WR,

The dizzy dean story is a classic! They stopped giving Katie the chloralhydrate when she turned 2... at her cardio exam they wanted to give her an echo with the CH.. ROFL she was like a drunken soldier... laughing, giggling and rolling around. They were able to tell one of her sutures was leaking, but couldn't get any details. I believe (and correct me if I am wrong) that CH is usually used for infants(doesn't really work after a certain weight), but Lindy, check with your docs... Also, check the AAI post from last wainter or spring. I believe Alice said they used some different type of sedation on Luke. Not a general... hmmm having trouble remembering what it was...

Anyways, Hugs

Cathy

[momofrussell]

I am laughing Cathy at your daughter giggling and laughing on that stuff. ;D When Regan was around 2 or so she had to have a brain scan because she was having fainting spells and wanted to rule out siezures. We had to go THREE times because that is how she acted.. she never DID fall asleep like they said. Finally on the 3rd attempt she didn't giggle as much and we got a test off of her... but she never did fall asleep or relax like she was suppose to! Drove me batty... I was like.. can't you give her ANYTHING else!!!! LOL

A.

[poojamom]

Hai all,
Pooja's MRI came out normal and we are so much relieved. Poor girl was so worried she woukdn't be able to play sports again. A happy ending after all.
Rajitha
mom to pooja(10) and Pranav(3)

[hannahsmomuk]

here in the UK in my area they don't do xrays for the AAI they test the reflexes as they said that if there is a possibility of them having AAI then their reflexes are weaker and don't respond so quickly.

If this then happens then they send them off for xray but they don't like to do xray unless absolutely necessary cos of putting the children through unecessary pain