Dexa Scan

I first heard that I should get Cole a Dexa Scan at a Dravet conference. I wrote it down, shelved it in my "To-Do, But Not An Emergency" list. I was overwhelmed with information at that meeting, it was like cramming for finals. You retain some of it, and the rest is just gone. Occasionally bits and pieces come floating back. I had thought about it a couple of times over the years but did not feel like it was something that we had to do right away. Fast forward a couple of years....

Cole has broken both of his feet, right across the top. The first time (right, July '09) was while doing proprioceptive pressure exercises. The second time (left, Oct '10) was when he fell down the stairs after having a small seizure that threw off his balance. After the second break, I got him a referral to see a bone specialist and to get a Dexa.

Dual-emission X-ray absorptiometry is a means of measuring bone mineral density (BMD). Two X-ray beams with differing energy levels are aimed at the patient's bones. When soft tissue absorption is subtracted out, the BMD can be determined from the absorption of each beam by bone. Dual-energy X-ray absorptiometry is the most widely used and most thoroughly studied bone density measurement technology. The DXA scan is typically used to diagnose and follow osteoporosis. It is not to be confused with the nuclear bone scan, which is sensitive to certain metabolic diseases of bones in which bones are attempting to heal from infections, fractures, or tumors.

Cole waiting for his procedure

The doctor from Childrens Hospital of Philadelphia (CHOP) explained to us in this class that Anti-Epileptic Drugs (AEDs) can have an effect on bone density. Couple that with a genetic disorder that might have metabolic co-morbidities and you can have serious bone issues starting at an early age. Calcium and Vitamin D are important to add to the list of supplements if you have a child with Dravet.

Our actual appointment was an absolute nightmare. It included 6 hours in the hospital, three hours waiting in the waiting room just to be seen, two major seizures, our portable tank running out of O2, Cole turning an awful shade of grey from not breathing, me running around in public with urine (Cole's) streaming down my clothes, a hasty late lunch in a not-so-nice part of DC where Cole and I were the only Caucasians, having to re-do the dexa, Cole having so many small seizures that he couldn't hold still for the procedure and so the results were not optimal anyway, having to draw labs on a post-ictal child, and someone being offended by me pulling down my sons pants to give him rescue medication while he was having a seizure in public. And this is the Reader's Digest version :) I self-medicated with Cafe Rio and Georgetown Cupcakes when it was over!However, through it all we learned that Cole's bone density is not horrible, but it is not good. We need to keep an eye on him for possible fractures since he does not feel pain like the rest of us. We need to follow up in six months with the bone specialist and we will repeat the Dexa Scan. This is a very low radiation procedure, so if your child has Dravet, it is worth looking in to. It is as painless as an x-ray, they just need to hold still. Dexa Scan machines are not available at every hospital though. The pediatric software is hard to come by and we had to go to Childrens National Medical Center. See if your Childrens Hospital has one!