Another Mystery Solved?

Lillie has had pretty severe vomiting episodes on and off for the last few months. As well as she has been doing in other areas, it has been worrying us a lot.

The first time it happened was a weekend in late April and she was up sick all night, so we took shifts holding her and trying to comfort her. When we took her into the doctor the next day it was diagnosed as a stomach virus. She recovered over the next couple of days, but then the same thing happened the next weekend. Again, it seemed like a stomach bug so we figured that she was re-infected by a toy or something in her room.

But it kept happening. Two weeks later, then in four weeks, and again in four weeks with smaller episodes in between. We got really good at the baby equivalent of holding her hair back. We consulted several doctors, including Lillie’s gastroenterologist, g-tube surgeon, nutritionist and pediatrician. We gave her anti-nausea medicine at the first sign of trouble. We took her in for an upper-GI scan which involves using Velcro to strap her to a board and spin her around so they can take images at specific angles. We tried switching her food multiple times. But it kept happening.

She had another episode this week, and it was worse than usual. The anti-nausea medicine that had always knocked it out didn’t work this time. After her amazing, trouble-shooting dad (mom was out of town on a business trip) spent the day calling nurses and getting her an after-hours clinic appointment, we found out that she had outgrown the dosage of her medicine; she finally started to feel better.

You can imagine it was not the best week for team Lillie. But, as we have learned over the last year and a half, there is always something bright and shiny mixed in with the dark and gloomy. This time, it was Lillie’s urge to grab Grandma Bette’s water bottle and start drinking from it like she knew exactly what she was doing. This may sound simple, but it is a big deal because she has difficulty swallowing and has been only getting limited fluids by mouth with help from therapists for about a year. It felt like she just woke up thirsty and decided she was ready to go for it.

We also got a possible diagnosis from Lillie’s pediatrician. She thinks her problem could be cyclic vomiting syndrome (CVS). This is usually something that is seen in older kids (3 to 7 years old), but it can happen at any age and it seems to fit her symptoms. Unfortunately, there is no cure per se, and it will likely continue to happen regularly, but it isn’t associated with anything life threatening either. Basically, people with CVS have these episodes at regular intervals and they don’t know why. We’re hopeful that Lillie will grow out of it – and not get the migraine headaches that are associated with it – and grateful to have one more mystery (tentatively) solved.

P.S. Special thanks to team Lillie member and speech therapist Rachel S. who recently moved to another part of Texas but made a big impact on our little one while she was here. Wishing you nothing but the best Miss Rachel!