gingerandjohn.com » Pharyngeal Dysphasia

Latest results: no neurology issues

John — Fri, 02 Jan 2004 15:49:34 +0000

Chance had his neurology appointment today with Dr. Shub. He saw the nurse-practioner first, then Dr Shub. Both did what I guess are standard evaluations: follow my finger without moving your head, hop on one leg, balance tests, reflex evaluations, and the like. Dr Shub said that he didn't see anything that would lead him to want to do any further neurological tests (like MRIs).

So a good news, bad news kind of visit: good that it's not neurological, bad because we still don't know how to fix the problem. Chance has his OT/PT evaluation next Thursday, so maybe that will show something.

“Yep, need some more tests!”

John — Tue, 16 Dec 2003 19:29:14 +0000

Chance had his latest round of appointments yesterday. Dr. Riski, the cranio-facial doctor, talked to us about the myotonic dystrophy issue, and was pretty confident that wasn't it. He looked at his grip release speed, how well his eyes followed a pointing finger, and how well he could wrinkle his forehead. Apparently, those types of motions are good early indicators; Chance passed. He also got Chance to try to bend a tongue depressor with his tongue, and was a little perturbed that he couldn't do that.

We met with the nutritionist, who took some dietary information, and weighed and measured him. He's in the 75th percentile in height and the 40th in weight. His body-mass index is in about the 45th percentile, which was a relief, since we've been worried that he's been losing too much weight. She did suggest that we give him more protien. I felt like suggesting she was welcome to try herself.

We had a good initial visit with Jessica, the occupational therapist. She had all kinds of gadgets and toys, mostly to test different types of hand and finger stregth and dexterity. She said his strength was low. So, we're going to get a full occupational and physical therapy evaluation next month. Ginger and I filled out the questionaire this morning, but there certainly wasn't anything that jumped out at us from how we answered the questions.

So, no results, just more tests to come. Dr. Riski says that we don't have all the pieces yet, but it's still a little discouraging that we haven't been able to make things any better.

Chance did go to school last Friday, but was very tentative and withdrawn, and asked to go home pretty soon. Apparently the kids aren't teasing him anymore and play with him during recess, but no one wants to sit next to him in class. We will have a teacher come out starting in January for 3-6 hours a week, so that should help some, but I still just wish there was something we could do so that he could go back to school.

“Gulping produces Celiac diagnosis”

John — Thu, 20 Nov 2003 14:24:57 +0000

All of Chance's test results came back negative. They tested for Celiac disease, cryptosporidia (sp?), and giardia. I don't know what the stool samples tested for, but they all came back negative too.

Chance has been gulping air a lot. Some is probably from dry throat, but mostly I think it's because he thinks it sounds neat. He's gotten into the habit of it, so it's hard for him to not think about the action of swallowing. Problem is, the doctor who called with the test results claims that his gas is due to his swallowing.

Now, I'm not board-certified or anything, but if Tums doesn't help his gas, why does gulping air cause it? I'm certainly more inclined (and hopeful) to think that it's something in his GI tract that's the culprit. We have an appointment with the GI specialist again on the 12th, but Ginger said we might be able to get in to see that doctor before that.

I mean, really. Air? If that was so, he'd be much better at belching than he is.