Monday, February 10, 2014

Cyclic Vomiting Syndrome

My experience with hyperemesis gravidarum has lead to a pretty decent case of emetophobia for me.  A fear of vomiting.  Really, more of a fear of nausea in my case.  Because when you've been on the verge of vomiting for entire weeks at a time, regularly gagged on water, and ended up in the hospital for an inability to eat, the last thing you ever want to feel again in your life is nauseous.  I think I hide/manage it pretty well.  I still take care of my kids when they're sick, but as soon as they're settled back in their bed on or the couch, I'm washing and sanitizing everything in their wake to an irrational degree.  And as soon as it's possible, I take time to myself to have a long internal dialogue about how a stomach bug is not pregnancy and it's short lived and even if I get it, I will be okay. 

I say all that just to set up the absurd twist of fate that is our current situation.  It turns out we have not one, not two, but THREE children with some type of vomiting condition.  Secora has been experiencing car sickness to such a degree that I'm often not sure we will even make it through errands here in town.  On trips, dramamine works well, but I haven't figured out what to do with her on a daily basis besides stop the car and crank the a/c when she tells me her tummy hurts.  I'm also very prone to carsickness and the biggest help for me is to drive the car.  Clearly that won't work for her for quite a few years.

What I really want to write about today though is the cyclic vomiting syndrome Sierra was diagnosed with a while ago and now Sedona has been diagnosed with as well.  This is a somewhat little known condition that can really wreak havoc on a kid's life.  CVS has four phases:
  • Interval phase: the symptom free periods between episodes
  • Prodrome phase: The warning signs.  Much like people who have migraine headaches may experience auras ahead of time, this phase typically involves signs an episode is about to start within the next few hours.  For both my girls, this occurs as a severe pain in their abdomen.  They insists it's just "a pain" not sharp, not stabbing, not cramping, just pain.  They always gesture with their whole hand to the area around their belly button when asked "where does it hurt".  Some people can take medication during the prodrome phase and abort the episode.  Sierra has been able to do this with a lot of success recently.  She recognizes the very early warning signs, takes her medicine right away and avoids the worst of it.  Sedona is new to this, but I think she's starting to figure out how to do this too. 
  • Vomiting phase: Just what it sounds like.  This is frequent vomiting (every 10 or 15 minutes) that lasts for hours or days.  Luckily, Sierra and Sedona seem to have shorter episodes that stop after about 4-6 hours without treatment (not that we try the non-treatment route now that we know what it is).  The person generally looks and feels really bad during this phase.   An apt descriptor is that they seem to be in a "conscious coma". 
  • Recovery phase: The hallmark of CVS is that the person is totally fine between episodes.  No one else in the family gets sick and with a short vomiting phase, you could have a kid puking non-stop all morning, take a nap, and be completely fine by dinner time.  We have found that during the recovery phase, it's pretty easy to slip back into another vomiting episode.  We have to be on top of prevention measures for a few days after an episode, or they'll cycle right back into it.  
If you suspect your child (it can happen in anyone, but often starts in childhood) has CVS, you need to have a doctor examine them to rule out other causes.  Then there are various treatment options depending on how severe and frequent the episodes are.  There are a lot of good resources available from the Cyclic Vomiting Syndrome Association. Some basic background: the terms cyclic vomiting syndrome and abdominal migraine are used together and sometimes even interchangeably so often that I can't figure out if they're actually different or not.  The main difference seems to be if there's vomiting or not.  My girls get the pain of an abdominal migraine (just like a migraine in your head, but the severe pain is in your abdomen instead of your head) and also the vomiting.  Some people have just the pain or just the vomiting.  CVS is related to migraines and there is often a family history of migraines.  More girls than boys have CVS and episodes most often start around 5 years old (my girls were 8 and 6).  Most children stop having CVS episodes during puberty, but begin to have migraine headaches.

It is thought that the root of CVS may lie in mitochondrial insufficiency.  Mitochondria are the power plants of your cells.  They create ATP (what your cells use for energy) through a process called cellular respiration. Mitochondria have their own set of DNA (mitochondrial DNA, or mtDNA) and your mtDNA is only inherited from your mother.  This is interesting because CVS sufferers often have a maternal family history of migraines.  Certain changes in mtDNA can make the mitochondria less efficient at producing energy.  The theory is that while they may keep up fine during normal times, the added energy needed during periods of excitement, anxiety, sleep deprivation, menstruation, illness and fasting (such as the hours of not eating overnight) can put the mitochondria in a deficit.  For some reason not quite clear (or that I haven't found), this triggers the CVS episode or migraine.

When this all started, without any interventions, Sierra was having 4-5 episodes a month and Sedona started out with I think 3-4 distinct episodes, but they're either longer lasting or she very easily falls back into one rather than recovering fully (we'd get her past the vomiting phase and then she'd have prodrome symptoms for the next 3-4 days).  We have found zofran (ondansetron) works really well for the girls to abort an episode.  It can stop the vomiting, or sometimes prevent it if they take it when they first feel those prodrome symptoms.  We have also found making sure they aren't overly tired (especially during recovery) helps reduce the number of episodes.  If they have something exciting coming up or have had to stay up late, we'll make them nap.  We also make sure they eat regularly.  Complex carbs is the recommendation I've read and it works well for us.  However, they typically get a headache after an episode and we aren't sure if this is from the CVS (which is possible) or a side effect of the zofran (also possible).  Between the two of them, I was also feeling like I was doling out zofran all the time, so I decided to talk to their doctor about trying co-q10 and l-carnitine supplements to prevent episodes in the first place.

L-carnitine is necessary to get fatty acids into the mitochondria where they can be broken down to form acetyl CoA (a key part of the citric acid cycle---the "engine" making that ATP for your cells to use as energy).  Co-q10 is a coenzyme that is an important in the citric acid cycle and the electron transport chain.  In short, they both help your cells make energy.  After reading through a couple journal articles, and sharing them with our doctor, we came up with an appropriate dosage of each for the girls.  In order to get the amount they needed in a form they could take, we ordered a liquid version from amazon.  We haven't started it yet, it should arrive later this week.  We're hopeful it will decrease the number of episodes, there are some anecdotal reports of these supplements reducing the frequency from a few times a month to a few times a year, which would be great.

Long story short.....if your child keeps getting "stomach bugs" that no one else catches and the symptoms always look remarkably similar from episode to episode, have them examined by a doctor and ask if CVS might be an possibility.  While it can be extraordinarily disruptive to life, it can also be treated and possibly the number of episodes can be lessened.  We our very fortunate that our girls have what would be considered a mild version of CVS, but it can be severe enough that each episode requires hospitalization.  It's best to be proactive and try to get a diagnosis and treatment early on, some families stumble through these severe episodes for years before getting an accurate diagnosis.  Because CVS is relatively rare, many doctors just don't have a lot (or any) experience with it.  Work with a doctor that is open to learning new things and share the information available from the Cyclic Vomiting Syndrome Association to aid them in making a diagnosis. 

2 comments:

maryanne said...

My name is Maryanne & I suffered with migraines most of my life, then after my husband left me & my son was hospitalized with health problems of his own, I suddenly started getting these episodes of vomiting , extreme cold chills & almost a comatose state. At first I thought it was caused from stress but it continued once a month to several times a month , every month for a year! After much research & doctors visits , I was told I had CVS! ! My doctor put me on Q10 & the vomiting stopped almost instantly but I still get frequent spell of nausea. Does anyone know know if this is common with CVS? & what can I do for it?

The Hills said...

Hi Maryanne. My girls do get nauseous aside from the acute episodes and I also have frequent nausea (but not CVS...I just think it may be related since CVS seems to mostly be inherited from mom). They do better when they eat carbs regularly. Since I wrote this post, they have also both been prescribed imitrex which they take for any episode that isn't aborted with one dose of zofran. The imitrex fully aborts the episode better, they don't "hover" in that "about to have another episode" zone for days afterward like they did when they only took zofran and that helps with the nausea. You may want to talk to your doctor about either one of those.

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