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The secret with the child is that she will know at a deep level, that you are the one that went through it with her. Those nights when she cries and you swaddle and you rock and you sing and you feel like you just want to curl up and die - she will know that you were the one who loved her enough to go through it with her.

EP CatholicKnight (via catholicknight)

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Testing.

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I don't know if it is a "thing" that I have missed the start of, but a couple CVS parent group members have started posting pictures of their kids making it through big events like a school play or just enjoying a nice weather day. It's encouraging and I know doubly a big deal to see some of these kids make it through what seem so normal and unappreciated for so many other kids.

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Amazed we made it through so many things this week - winning conference, Blue Man Group - but she could hold out no longer. Pretty much lost the day to CVS. It always sucks for her, but one of the hard parts for us is just losing her for a day. Either asleep or throwing up for the whole day. No telling how tonight and tomorrow will go.

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What is CVS?

Cyclic Vomiting Syndrome is a chronic functional disorder of unknown etiology that is characterized by paroxysmal, recurrent episodes of vomiting

CVS is characterized by recurrent, discrete, stereotypical episodes of rapid-fire vomiting between varying periods of completely normal health

First recognized/described in 1882

The pathogenesis of CVS is likely to be multifactorial, with multiple genetic, autonomic, central, and environmental factors playing a role. Further studies are needed to elucidate the exact mechanisms underlying this disorder

The median age at onset is 4.8 years; however, CVS has been observed in infants as young as 6 days and in adults as old as 73 years

The typical interval from onset of symptoms to diagnosis is 2.7 years

Research suggests it affects nearly 2% of school-age children, and may affect as many adults (more adults have been recognized/diagnosed in the past several years, many who have had symptoms for several years or even decades with no answers)

More than 50% of patients require intravenous (IV) fluids, compared with less than 1% of patients with rotavirus gastroenteritis.

Patients typically describe the nausea as the most distressing symptom: It is unrelenting, is completely unrelieved by vomiting, and disappears only when they are asleep or the episode is over

Triggers include infection, psychological stresses, foods, physical exhaustion, lack of sleep, motion sickness, atopic events, menses, and more- Positive excitement, such as birthdays, holidays, vacations, and school outings, appear to trigger more episodes than do negative stresses

(Source)

My CVS Story (The Highlights):

Onset in November 2010, at age 22. Originally attributed to “post viral gastroparesis”

Diagnosed November 2012, after 5 ER trips from July - September for unrelenting nausea and vomiting with no apparent cause.

At one point slept for 24 hours straight while recovering from an episode.

Spring 2013 I got a prescription for ativan PO and for the first time ever stopped a cycle before I started vomiting.

2014 had 3 cycles over the year, with 11 different days in the hospital or ER.

In March 2014 I was severely mistreated by the doctors, was sent away from the ER, and I returned less than 6 hours later with a critical (ie, life threatening) lab value.

They’ve had to place a midline catheter because I had such poor vein access.

My most recent episodes, I could tell they were coming on, and I was taking all my meds as prescribed, doing all the techniques that had previously worked in the past, but was unable to stop the cycle progressing to the vomiting stage. I also did not seem to react as well to the drugs that had previously quickly ended my cycles once I started vomiting. 

Now: doubled the dose of my daily prevention med, still on night shift, but having to be very careful/aware of my sleeping and eating habits. Still will often have prolonged instances of dull nausea for no real reason. Hoping for a hospital free year, but also aware it’s unlikely. Working with a new GI specialist who has more experience with this rare syndrome, and feel hopeful and more confident with her in my corner.

How living with CVS has changed my life:

I have physical limits I didn’t have before. I have to be hyper-aware of all my potential triggers, and that I’m self regulating my emotions (stress and excitement levels), my sleeping and eating patterns, etc.

I have to be extra careful because I often won’t feel like I’m pushing myself until it’s almost too late. I have to be ahead of the game to stop a cycle before it even starts.

I feel kind of crazy sometimes, because I’ll go on about my “rules” even though I feel fine. Then something will get altered slightly and I’ll spend half a day nauseous and remember I’m not making this up.

Things that I felt made me “me,” now might make me sick. It’s been a huge shake to my personal identity and overall well-being. I’ve started therapy to help process how much this change has affected me.

I choose my insurance coverage based on the assumption that I will have at least one emergency room visit and likely an admission that year.

I don’t travel anywhere without choosing a hospital, having a plan in place for who will take me, and having my CVS prep bag with all my meds, records, emesis bags, etc.

I have spent over $12,000 in medical bills since 2010. 

I worry about how wise it is to do anything that gives me anticipatory, anxious excitement… ie…. dating, going on vacation with friends I haven’t seen in a while, doing anything I’ve been looking forward to. Basically, you know. Living.

How I am stronger than my CVS:

I still left my staff job to start travel nursing the month after my diagnosis. It seems kind of crazy looking back, but I refused to let my fear of what it meant dictate the decisions I made. I’m so glad I started travel nursing, because I’ve loved it, but there have definitely been triggers that have caused episodes I might not have had if I hadn’t been traveling- but every episode also helps me learn how to better manage my syndrome (particularly the early episodes), so I’m thankful to have a stronger plan in place to prevent and treat cycles when they occur.

I have been able to stop several cycles from progressing! Even when it meant missing out on something I was really looking forward to (like an exclusive event at the Wizarding World of Harry Potter). It’s hard sometimes, but I am learning to listen to my body better. 

I still work full time, I still love what I do, I still get to feel like a normal person most days. And I’m much more appreciative of those normal days now.

I’m also a better nurse now that I have been the patient in the bed on multiple occasions. I can understand on a deeper level what many of my patients are going through, so I’m able to connect with them and reassure and comfort them better than before.

What’s important to remember:

I’m one of the lucky ones. There is no reason I can take credit for that this syndrome hasn’t affected my life more, and there’s no guarantee that my episodes won’t become more frequent and debilitating in the future. As it is, anytime I cycle I lose on average a week of my life.

One of the biggest barriers to proper diagnosis and then treatment is medical professionals not recognizing the syndrome. In fact, in one study, 88% of adults and 80% of children had their diagnosis not recognized in the ED despite an established diagnosis of CVS. This leads to mismanaged care, delay in recovery, increased hospital time, and often unnecessary tests and procedures.

Read more:

My other CVS Awareness post that is more of a narrative

Very transparent post about what it’s like to live with CVS, written the week after my last cycle

Introductory post I wrote for friends explaining a lot of the language used to describe CVS

My blog’s CVS tag, for more insight into episodes, dating back to me struggling to accept the diagnosis was real

Cyclic Vomiting Syndrome Association

Mayo Clinic page on CVS

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It is not just nerves or eating a particular food. Sometimes it means leaving a family function at the drop of a hat (or a look in the eyes). It often means taking two cars just in case. It means that every plan has a plan B. It also means going through something with your child and coming out stronger on the other side. It means rejoicing for little things, like that you were able to enjoy that day without incident.

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Posted with permission from another parent of a child with CVS, written by her daughter. Today was actually like that for my daughter. She had an episode yesterday and today she was just bouncy and talkative. I explained to one of her teachers that we are often the happiest and most relaxed just after an episode because we don't feel like there is a good chance an episode will hit again. We don't have the worries. We see the light because that cloud of worry doesn't hang quite as darkly.

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Sitting next to my daughter and I "tooted." She slides away. I ask, "Does it stink?" "I have no idea." She passes the intelligence test.

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From a CVS parent page. Rather fitting.