Doesn't Seem Abstract ... Seems Pretty Clear

Just when you think it's ok to do some more research on-line .... Here's the abstract to an article I saw last night (I'm trying to get the full article):

"Heart transplantation is usually utilized in pediatric patients with dilated or restrictive cardiomyopathies, or in patients with hypertrophic cardiomyopathies with the hemodynamic characteristics of dilated or restrictive cardiomyopathies. Pediatric Cardiomyopathy Registry (PCMR) data suggests that transplantation is utilized in patients with idiopathic, familial, or myocarditis dilated cardiomyopathies to a greater extent than in dilated cardiomyopathies observed in malformation syndromes, inborn errors of metabolism or neuromuscular disease. Single and multicenter studies suggest that lower left ventricular ejection fraction at presentation is associated with a greater likelihood and a diagnosis of myocarditis to a decreased likelihood of heart transplantation respectively. International Society for Heart and Lung Transplantation (ISHLT) data demonstrates cardiomyopathy is making up an increasing proportion of heart transplantation in infants.

PCMR data suggest that the overall freedom from death or transplantation in patients with pediatric dilated cardiomyopathy has changed little in the past 15 years. However, survival after pediatric heart transplantation has improved over the same time period. Two single center studies have found that while survival with pediatric dilated cardiomyopathy has improved, the freedom from death or transplantation is similar to survival in pediatric dilated cardiomyopathy prior to the routine use of heart transplantation. Furthermore, these studies could find no impact from new medical therapies on transplant-free survival. These findings suggest that heart transplantation may be the most effective therapy for improved survival in pediatric dilated cardiomyopathy. " [Bold mine.]

Ugh. On the positive side, Annie was young at diagnosis. On the negative side, hers (so far) has fallen into the idiopathic (no known cause) category.

On the positive side, Annie is rolling all over the dog bed as I sit writing this, laughing and giggling like a loon. She's practically doing somersaults!

October 12 and the first echo since starting beta blockers can't come soon enough.

ENT Excitement

Annie had an appointment with a pediatric ENT at Children's this week. After a wonderful, leisurely, relaxing drive down to Boston in the rain (ha ha ha!), we met with the doc's assistant. She took Annie's history and then warned us that the doctor probably would want to put a small camera down Annie's nose to take a look. "Kids usually cry," she said. "But that's good. It opens everything up and the doctor can see things better."



"We'll see," I thought to myself. They said the same thing before the chest x-ray several months ago, and our sweet, easygoing girl didn't let out a peep. I didn't say what I was thinking out loud though, thinking that maybe I'd be wrong and this time she'd find the test objectionable. She's older now, after all. She has definitely found her voice ... like when you take something away that she wants to play with!


The doc was nice. Soft spoken and thorough. (We were told by the swallow specialist up here that he was the best. I think she was impressed that we got in to see him so quickly. Thanks, Dr. Lightdale!) As reported, he wanted to take a look at Annie's throat with a small camera inserted in her nose. They had me hold Annie on my lap, facing the doc, and holding her arms down. (Oh, boy.) Our little trooper didn't let out a peep -- not when the camera went down the first nostril and not when it went down the second! When I turned her back to me (after it was done), her eyes were all watery but that was it. What a girl! And you should have seen the smile she bestowed on the doc when he handed her a sticker! You could tell all was forgiven.


Long story short ...

1. Annie needs to have a CT scan of her nose/head at some point. There's no rush on this, but it needs to be done. It turns out that the dimple in her nose could be indicative of a problematic condition. Neither Scott nor I can remember the name, but it involves skin being in the nose as opposed to just cartilage. It can be seen as a dimple in the nose or in other ways. (The questions for which prompted me to tell the doctor that the dimple in Annie's nose didn't represent an unborn, parasitic twin!) A CT scan will need to be done at some point to rule out any complications from her ... yes, from her DIMPLE. :-) Bad news is that a CT scan will require sedation. Sigh.


2. We'll repeat the swallow study in Boston next month, mostly because we believe Annie's swallowing skills are headed in the right direction. The doc is going to give her a chance to prove it by doing another swallow study and comparing it to the one we did in July. If this study is normal, we go on our happy way. If it's not, we head to the OR (and sedation again) for the doc to take a better look at Annie's mouth/throat/vocal chord construction.


She really sounds better ... so here's hoping the swallow study next month will reflect that! Meanwhile, the countdown to the last echo of the year has begun. (Translation: I can feel the butterflies in my stomach already.) Less than one month until that day .... I hope it will contribute to a BIG celebration at her birthday party on Nov. 3!!

Cardiology Appointment 8/30

Just a quick note since I mentioned we had a cardiology appointment in the last blog entry. We saw Dr. Johnson here in NH on Thursday and he checked Annie out. Dr. Johnson hadn't seen a copy of the report from our last visit and echo in Boston, so we updated him on the latest echo numbers. He thought Annie looked great and was glad to hear we started her beta blocker and she seems to have handled the additional med relatively well. (She's spitting up again, which we learned can happen with beta blockers. The GI increased her reflux med a tiny bit to see if it helps; otherwise, we may have to try another beta blocker. We don't want to see her lose ground after the past few weeks -- when she seems to have gained weight more easily than she has in the past. Not exactly quickly, but at least more easily.) He opted to increase her doses on the other meds to keep up with her weight as well. She was 16 pounds, 14.4 ounces and 27.75 inches by their measurements.

Dr. Johnson won't see us again until December -- and they weren't even able to schedule the appointment that far out. That was a first ... a happy first! We're back to Boston on Sept. 11 to see the ENT and then on Oct. 12 to see Dr. Smoot again. As it stands now, October will be Annie's only other echo for the rest of the year.

Oh, and she's ten months old today! Can't forget that. She had a great time both days at the beach this past week. My mother's response to this photo, though, was "please don't feed my grandbaby sand!" We don't feed it to her, Mom. Quite the opposite. I can't keep her away from the stuff!

Happy holiday weekend, everyone!