Baylee had an endoscopy procedure today. Reflux is probably the most common problem with Cornelia de Lange Syndrome, and Baylee seems to be one of the lucky ones. She takes Prevacid which seems to keep her symptoms under good control. She had her last endoscopy in August of 2007, and we usually don’t do another for 2 years. However, she’s been gagging lately and has even vomited with the gagging, so her GI specialist thought it would be a good idea to check if there was any damage even though we suspected it might be behavioral.

Her esophagus and stomach looked great, so that’s good news!

Figuring out why she’s gagging herself is another matter. I tend to think it’s stress related, though sometimes that stress seems to occur for her when she doesn’t get her way. Other times it seems to be related to routine disruption. She likes her routine and has a lot of anxiety when she’s in an unfamiliar situation.

In any case, back to the drawing board.

Baylee did great at the hospital, and except for a meltdown when it was time for her to go to the surgical room, she was a model patient.

Baylee is pigging out now and is a happy camper. She couldn’t eat after 6 pm last night, so she’s making up for lost meals now. She had a macaroni and cheese dinner at Hy-Vee for lunch….now she’s inhaling microwave burritos. She wants another one….off to appease my little piglet.



Filed under Cornelia de Lange Syndrome

7 responses to “Endoscopy

  1. My name is Leslie & I just joined the blogging community! I also have a daughter with CdLS and hope you dont mind I added you to my blogroll! Your daughter is beautiful as I am sure your whole family is. I look forward to reading your blog!

  2. I’m glad to hear she looks good on the inside too! I can’t imagine at this point trying to figure out the behavioral aspect of the gagging. Much luck! I wouldn’t be a happy camper if I needed to go to the OR either…

  3. I’m glad Baylee’s endoscopy went well! Jessica has her GI appt. next week. It’s been awhile since her last endoscopy so I’m sure they’ll want to schedule one.

    Interesting about the gagging/vomiting…Jessica is doing pretty much the same thing (which prompted me to make this appointment). She will choke/gag and spit up or sometimes when she gets really wound-up and over- excited she will start making this gargling sound (which she thinks is hysterical) and eventually spit up.

    I suspect it may be behavioral…either to get attention or avoid something she doesn’t want to do. But we can never sure with our kids!

  4. Glad the scope went good for her! She deserves all the mac and cheese and burritos she wants! :0)

  5. good news for baylee!! I need her to meet with Mason to teach him a thing or two about eating LOL! 🙂

  6. Rosemary

    Great news bout her endoscopy. I hope you get down to the cause of her gagging. Just wondering. Is Baylee as big a drama queen as my Anna?

  7. I read your posts for a long time and should tell you that your posts always prove to be of a high value and quality for readers.

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