CT scan, swallow study and more questions

Today, Bertrand and I got to radiology early so I could schedule his brain CT scan for June. Well, it turns out, we got there so early that they said, "we can just do the scan now." And, we did--without sedation! There are some motion artifacts but nothing so bad as to render the scan unreadable, according to Casey, the CT technician. I am so proud of my big boy for staying so still! I am looking forward to the CT scan's interpretation from radiology.

After the brain CT, Bertrand had his very first swallow study done. The result is oddly mixed. Yet again, they'd never seen anything like Bertrand before. On the X-ray it looked like his swallowing was fine, but he still aspirated. As some of you know, Bertrand jerks his head during feeding. The therapist also didn't like how he seemed to be taking breaks for breath or how his breathing sounded. (I have found his breathing raspy/loud but all the doctors say his lungs sound clear.) So, we are being referred to an otolaryngologist--an ear, nose and throat specialist (ENT). An ENT can use a scope to look down his throat and see if there is anything unusual such as narrowing, which doesn't show up in a swallow study.

I am waiting to get an ENT referral from Dr. Samson-Fang in order to schedule that appointment. I am also waiting to hear back from Dr. Sakonju. Bertrand and I ran into her at the hospital and she'll be calling me later today with the preliminary results from yesterday and her reading of today's CT scan.

CT Scan Results, Blood & Urine Tests

The poorly inserted (& removed) IV hurt Bertrand's right hand.

CT Scan Results
As anyone who has met Bertrand knows, he moves even in his sleep. We've learned that this does not a good CT scan make.

The radiologist who read Bertrand's CT scan said that, while apparently normal (no evidence of tumors or trauma), the scan was not clear due to "motion artifacts". So, yes. Despite being sedated to level where most babies are catatonic, being strapped down to a table, and having his mother (in a lead vest) holding down his arms--Bertrand jiggled all through his CT scan.

I'd recommend to any parent of a child with a movement disorder: go with general anesthesia. With general anesthesia, Bertrand kept still through his entire MRI and for much longer time than the CT scan. In order to sedate Bertrand for the CT scan they had to put in an IV--it was just as difficult as putting him under general. And, he suffered no ill effects from either.

In the future, we will err on the side of not having to redo our expensive medical imaging work by going with general anesthesia over sedation.


Blood & Urine Tests
This morning we went back to the Primary Children's Medical Center, this time to the outpatient lab. Patrick, our excellent lab technician, hit vein right away. The draw was quick, clean and basically painless (Bertrand barely noticed).

This blood sample will be used in the DNA diagnostic for ataxia telangiectasia. Basically, they will irradiate the blood at Johns Hopkins to see if and how the DNA changes. A positive result is not a definitive AT diagnosis, but that does put us in the realm of genetics. We will know in 4 - 6 weeks.

Blood drawn today is also going to test for Sydenham's chorea. This test will be run inhouse at the University of Utah. Due to the uncommon nature of this test, they save it to be run in batches. We'll get the results when they run it, generally between 1 - 2 weeks.

Bertrand's standard blood and urine tests will also be run. (However, this morning he decided that he was going to resist donating a urine sample, so we'll be taking a frozen--yes, frozen--urine sample to the lab tomorrow.) These results are back within a week.