Several months ago I wrote about Reagan waking up many times during the night with screaming fits, seemingly related to stomach pains (read about it here: sleep issues). We visited the emergency room, received a diagnosis of trapped gas, stayed for 24-hours, and happily went on our merry way. I was relieved that it was not more serious and that she would finally have some relief. Wrong.
After a couple of weeks of peaceful nights, it started again. The majority of nights she would wake up anywhere from 2am to 4am, screaming and was difficult to console. She refused to sleep once she finally calmed down so we were all exhausted. Other nights the screaming would be every 3 hours, starting about an hour after she went to sleep. It was not only night screaming, the screaming would happen during naps as well.
I tried almost everything to find the source. We changed her g-tube formula 3 times, switched gas relief medicines, switched constipation meds, increased constipation meds, switched gas relief medicine again and finally visited a new GI doctor to do an Upper GI scope to make sure her Nissen fundoplication had not slipped or was too tight. Nothing helped.
In mid-December I realized that I had changed so many things that I no longer had a clue as to what might be helping and what was adding to the pain. So, I went back to the beginning and switched all her meds to how they were before the pain ever started, which also included starting her back on Nexium for reflux (something the fundo is supposed to prevent). And then I waited, and waited.
I am happy to say that 2 weeks later she finally felt better. It was magic, she just started sleeping again and woke up with a smile! I have waited to post about it in fear that putting it out in the universe would jinx it.
I still do not know what was going on with her little body and what the magical fix was. My instincts tell me that it was reflux because it was the last thing that I added back (after 4 months of being off) and her spells were classic reflux symptoms that she experienced before we started the meds. I am too chicken to experient and take her off of Nexium because let's be honest, Mama likes her sleep!
Abby's first visit to Boston for the IGF-1 Trial
10 years ago
Yeah! We pray for Reagan & Rett every night.
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