Information that will hopefully be helpful

I have to do a public service announcement for a disorder Grace has: Cyclic Vomiting Syndrome. She was diagnosed with the disorder after presenting symptoms for over three years, being hospitalized 5 times by that point. For the first time since her diagnosis, I just this week saw mention of it in the media. Other than the doctor who diagnosed her, I have never met someone who knew what it was before telling them myself.

When Grace was four years old, she was hospitalized for two days with symptoms that had no apparent explanation. It was a traumatic drama. By the time she was seen by a doctor at the ER and her blood tests came back, Grace was close to going into a coma and it was revealed that she was close to kidney failure due to extreme dehydration. The attending physician took it upon himself to lecture me about how I waited too long to come to the ER and how I was being negligent in my care of her. I replied angrily, that's not what your triage nurse said when I insisted she needed to be seen immediately and then waited in the waiting room for four hours. Grace was hooked up to an IV, given anti-nausea medication by injection, and spent the next two days getting her strength and color back.

As the nurse took her from the ER to her room, she remarked, "she looks like a peaceful angel, she's so white." I guess she didn't notice that Grace's eyes were so sunken into the sockets that she looked like a Halloween ghoul.

Let me go back to the beginning of the story, though. The 24 hours before I encountered the scolding attending physician went like this:

In the spring of 1998, when Grace was 4, she and I were visiting family in the midwest. The night before we were to fly home to Texas she fell asleep for a five hour nap, woke up vomiting, and then fell back asleep. The next morning when she woke at about 4a, I gave her water to drink. We boarded our first flight home at 6a, and she vomited two more times before we landed in Cincinnati. At this point I realized something was very wrong. I called her pediatrician in Texas. He called in an anti-nauseal suppository that we could pick up as soon as we were back in Texas. By the time our second flight landed in Dallas, she could not be roused. I told the flight attendants I needed help, a wheel chair, something. I asked the baggage personnel to watch all our bags until I returned from the parking lot with my car. Then I took the airport people mover to the remote long term parking lot with Grace fast asleep in my arms, loaded her into the car, raced back to the terminal to get our bags, leaving her asleep in the back seat of the car on the curb while I hauled bags back and forth to the trunk.

About 10 minutes later, Grace woke up and vomited green bile. I stopped at the first pay phone and called the doctor.

"Should we go to Children's Hospital in Dallas now? I can't rouse her out of a sleep at all."

They said no, drive back to Waco, get the medicine, and she'll be fine. The two hours it takes to get home won't make any difference.

8 hours later, she still couldn't stop vomiting, and had begun having diarrhea. The doctor told us to go straight to the ER.

(don't ask where my now ex-husband was during all this.)

I think every parent has a story like this to tell. Some moment in which you thought everything was fine and you did everything right, but then without any warning disaster struck and you found yourself facing something scary. Something that endangered your child's well-being. After I recovered from the scare and Grace was seemingly healthy again and I returned to work, I thought to myself, what just happened? I spend all day as a professional working with small children who have developmental delays and all manner of health problems. I've been to that hospital 100 times with other people's children. How did I make such poor decisions when it was my own child?

The answer to this self-doubt came years later. I didn't do anything wrong. What Grace was suffering from that day she was hospitalized wasn't even diagnosed for three more years, and then only because I went to the pediatrician intent on finding out why my child kept having this problem. The cause of all this was the now identified disorder, Cyclic Vomiting Syndrome. It appears to show in families with a history of migraines. The patient, with seemingly no cause, has the urge to vomit. Once they start vomiting, they can't stop. Grace has an very interesting way of knowing an episode is about to start -- she actually gets a migraine beforehand.

Aside from the pediatrician who did the research and diagnosed her, I had NEVER found another mention of the disorder. Every partner in the pediatric practice, every school nurse, every provider in every ER, two more pediatricians, NO ONE had ever heard of it. Now, that in and of itself is not so unusual; children have odd disorders of all sorts that no one's ever heard of, so what's so special about this one?

Before this was diagnosed, the doctors didn't believe us at the ER. They thought she had food poisoning. They thought I was a bad parent. I had one resident tell me at an ER, "kids just don't start vomiting for no reason. There's something you're not telling me." And then there were the speculations that she was causing the vomiting intentionally. She wanted attention, or she was stressed out, or she wanted to skip school. During her adolescence, I've been cautioned that maybe Grace is bulimic.

The scary part of all this is that while you're trying to convince people that the kid really has a problem and to stop looking for all the regular suspects, your kid is suffering. Actually, worse than that. Your child's body is shutting down. When Grace had her first episode at age 4, she had lost over 25% of her body weight in 24 hours. Even now that she's full grown, severe dehydration is something that happens fast in these episodes and she desperately needs someone to treat her, not continue to question the cause of the situation.

And what does it do to child's self-esteem and confidence when everyone around them keeps doubting that their symptoms are genuine?

So here's my public service announcement:

Cyclic Vomiting Syndrome (CVS)

It is estimated that CVS affects 2% of children worldwide.
There is no known treatment.
It is unclear what the etiology of CVS is.

The sickness is not "in the patient's head," and they can't just will "mind over matter."

CVS is no longer considered a childhood illness.

The primary symptoms are that the patient feels the urge to vomit, usually does so, and once they start they cannot stop. Trying to give fluids orally during an episode not only doesn't help the situation, it actually worsens the symptoms by inducing more vomiting. This is true even for water or pedialyte.

If you know child who has these symptoms, maybe a child who insists they are not doing anything to cause the vomiting and adults aren't believing them, maybe they have this syndrome. Here's a website you can visit to get more information. And here's a story about the disorder that abcnews.com ran last week.