Yesterday, at 7am, a very hungry Miss Paige and a very caffeinated mother made their journey to Children’s Hospital for a Feeding and Swallowing Study…
Okay, so probably not the most exciting story but I’ll try to put some lipstick on this pig.
Let’s go back a few weeks ago when we were at the Pittsburgh Lissencephaly Meet and Greet.. I was talking to my new friends about doctors, appointments, Infantile Spasms, medicines, seizures, etc, and one of the subjects that came up was feeding tubes. More than half of the children there already had one and, not all but, many children with Lissencephaly have/will need a gastrostomy tube (g-tube) at some time in their life. The low muscle tone in their upper bodies make eating and swallowing very hard and it can lead to choking or aspiration. Fatigue while chewing and swallowing combined with the low muscle tone can cause food particles to get lodged in the lungs. All of this is basically a recipe for pulmonary infections along with cardiac issues. Add seizures on top of that and it’s bad news bears. To find out if your child needs a g-tube, they need to have a Feeding and Swallow test done.
Paige, at this point, had not been studied yet. Usually, the Feeding and Swallowing study is referred by a Pediatrician or a Neurologist but I wanted to be proactive. Although Paige has never, thank God, had any respiratory infections, she does have a tendency to cough and gag when she breastfeeds (sign of aspiration), sometimes vomits after a bottle feeding (sign of aspiration and reflux), and she arches her back while lying down (typical characteristic of Lissencephaly but also a sign of reflux that can lead to aspiration). Basically, I wanted to be prepared and get advice from professionals on better feeding tactics.
***Let me clarify, just because a child aspirates while eating, it does not always mean they need a g-tube. It’s actually one of the last resorts. Simple tactics like thickening liquids, changing bottles, and finding the right foods are the first changes and they can be very effective in controlling aspiration.***
Annnnd now, back to the story…
We made our way up the Grape Elevator to the third floor. We registered in the lobby and made our way to the Alligator wing and entered the Audiology department. (Those are real things! Cute, huh?) We were greeted by a Nurse, a Pediatrician, a Speech Therapist, and an Occupational Therapist. Every one had a computer and a laundry list of questions to ask me.
How many times does she eat a day? What does she eat? What does she eat from? Does has she had infections? Does food run out of her nose when she eats? Does she gag, choke, or cough while feeding? Does she arch her back? How are her bowel movements? How is her overall disposition? How do you prepare her food?
And those are just to name a few!
After my rapid fire answering session, we got right to it and I just… fed her! I showed them how she ate purees first. She did well and they were pleased with how she was swallowing. Besides a single Goldfish cracker her older brother gave her (and she choked on) I have not tried to give her any Puffs or dissolvable food at this point. The Occupational Therapist had some Puffs on hand and showed me how to crumble them and put them in her cheek so she feels the urge to chew. I guess I didn’t give her enough credit before because she chewed and swallowed about four broken up Puffs, total!
Next, I showed them how drinks formula from a bottle. I use Tommee Tippee bottles with her, and if you’ve never seen them, they really look like a boob. She started suckling (I hate that word) strong but started petering out after a few minutes. Formula ran down the side of her cheeks and drenched her bib. This is normally how a bottle feed goes for her. The therapists agreed that she was probably getting fatigued from sucking and her swallow was getting lazy. Still, I was assured that she was not aspirating – SCORE – and I was shown a different way to angle the bottle and advised to take breaks after every few ounces. Something that is super simple but I wouldn’t have thought of on my own!
Lastly, the dreaded breastfeeding! It’s a good thing I’m not really self-concious about anything because if I were, this would be the place I would be! I had three different heads right on top of her as she was eating. To this point, she hadn’t done anything symptomatic of aspiration, but I did want them to see some of the minor problems I was seeing to get their input on what to do. Finally, Paige did have a coughing fit and they took notes. Both therapists and the pediatrician agreed that no liquid was getting past her throat and it was due to eating too quickly.
Final Report: Paige does have low muscle tone but NO ASPIRATION!
Homework: Introduce more solids and harder textures (Eek!)
Recommendations: Different bottle feeding routine and Feeding Therapy at home
Overall, I’d consider it as good news! In the future, especially if she acquires an infection, we will have to get another study done but, for now, she’s good to go!
Corny joke alert: If there’s one thing my kid is good at, it’s eating *side nudge*