Sunday, October 9, 2011

the ones about Lily #2

Even before we got to her 2 week appointment, we knew Lily had reflux. I had several friends whose babies struggled with reflux, so I knew what to look for. At two weeks old Lily was put on medication. Things didn't get much better-I think little Lily screamed for the first 8 weeks of her life.


When Lily was 10 weeks old we took her to Children's ER because she had what looked like seizures. The ER doctors saw it, but didn't know what was wrong. She was admitted to the Special Care Unit for 48 hrs. No diagnosis was made. Thanks to a YouTube video,* we self-diagnosed her with Sandifer's Syndrome. Two weeks later (two very hard weeks where she was having "seizures" multiple times a day) we saw a Pediatric GI specialist and Lily was put on some new medication. She started in improve! Eventually we saw a Pediatric Neurologist for an EEG to see if Lily was having infantile seizures. He diagnosed her with Sandifer's Syndrome (YouTube knew all along). Her EEG was great-normal baby brain!

Lily's reflux is very atypical. She rarely spits up, rather her spit up comes to her throat where she chokes on it (we did have this confirmed with a barium swallow xray). Because the reflux just sits in her esophagus all day long, she is in severe pain, which is why she started having the Sandifer's episodes.

Today Lily still struggles with her reflux, general fussiness due to discomfort, and sleeping through the night. She also had a rough first 8 weeks on her medicine; one side effect of her medicine is diarrhea-we even had a totally unnecessary and unproductive trip to the ER because of bloody diapers! However, she has greatly improved and we are thankful. We still go through rough times - this past week she projectile vomited out of her mouth and nose 5-6 times a day and has had several more Sandifer's episodes. But on the whole little Lily is doing well. Her sweet sanguine personality is now shining through her pain. Instead of crying 24 hours a day, she smiles most of the time.


*If you watch this video, it may seem like it's not such a big deal. The seizures were HORRIBLE for little Lily. She would scream afterwards in intense pain and distress.

2 comments:

  1. Maegan, I had no idea any of this was going on! You're always in my prayers, and now even more specifically! I love you! Can't wait to meet those two cuties!

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  2. O man! We are DEFINITELY praying for you guys! I'm so sorry you all are having to go through this!!
    Love you!

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