For as far back as I can remember, Reine has woken herself up in the middle of the night about every 4-8 weeks vomiting in her bed. She then continues to vomit for anywhere between 30 minutes to about an hour, sometimes longer. No fever, no weird behavior or any symptoms that we are aware of. This has been going on for so long that we actually have a routine in place for when it happens. After we get her bed changed, the trail that leads from the bed to bathroom cleaned up and scrubbed, and finally Reine herself cleaned up, she goes to bed and wakes up in the morning completely normal.
No one could tell us what it was or why it was happening to Reine. Doctors and specialists we spoke with were just as clueless as we were. They did not know who to send us to to find out anything. Countless research I did online ended in frustration as she did not have symptoms that many others experienced with her episodes of vomiting.
In a post on a FB group I belong to, a mother posted about her 2 year old daughter waking up and vomiting in a pretty regular pattern. She was wondering if it could be Cyclic Vomiting Syndrome (CVS). I had never heard of CVS before this post. I responded to her post with Reine’s story. When I looked up CVS, I figured it was going to be another dead end. About this time another Mom responded who has CVS. She sent me a private message with a link and the kind of specialist we needed to make friends with. A gastrointestinal specialist (GI)
The more I researched CVS, the more I saw Reine. I immediately began searching for a Pediatric GI specialist who not only specializes in unusual stomach disorders but they also needed to specialize in special needs children. Not as easy as it sounds.
Reine’s autism gives her a seriously HIGH threshold for pain because her brain registers pain differently. This is normal in girls with autism. She can’t tell us yet if she feels certain things or not so obvious symptoms that those not on the spectrum would be able to register, feel, and express to others.
Example…4 months ago she told us her throat hurts directly after the vomiting. This is a normal reaction for anyone that vomits maybe once or twice. This would be especially true for anyone that vomits for close to an hour straight. But Reine did not understand or register what that feeling was. So, she never told us.
Until 3 months ago, she wasn’t able to tell us she was scared during these episodes. She would do a continuous banshee wail unlike anything we had ever heard in our lives. We could not get her stop making the wailing sounds until right before she would fall back to sleep. No amount of soothing, comforting, etc could get her calm down. However, as soon as she was able to tell me she was scared and I acknowledged her (verbally) about her being scared, she stopped making the sound after a couple of minutes. I was able to comfort her in the way SHE needed. She finally broke through to me. I already knew she was scared. Hell, anyone would be. She needed for me to repeat her words back to her.
Just 2 months ago, she was able to tell us her “tummy hurts badly” during her episodes. This was something I just assumed. Involuntary muscle spasms are never not painful. However, with CVS, the stomach pains can be excruciating almost crippling. For Reine to actually say it hurts means it is excruciating. I now apply essential oils to her abdomen.
During the last episode, she was able to tell us that the showers we do to get the vomit off of her, are extremely painful and feel like “nails being hammered into her skin” because of her sensory processing disorder. I always wondered if it was painful or too loud for her to process, or a combo of both in the past. We always just give her a bath. Even in the bath, there is often a struggle with washing or rinsing of hair and body. However, a bath is not possible in this situation. Now, I hold her in the shower tight against me. We wrap a towel around her body. As she relaxes, I am able to let her stand in the shower and scrub her down. We hold the towel up as a barrier between her body and the shower water.
It seems that with each episode lately, I am able to unlock another part of Reine’s CVS symptoms and her reactions to them. This may allow us, in time, to actually prep and help her when she has another episode.
What exactly is CVS? How do you test for it?
CVS is a disorder that affects patients of all ages and is characterized by recurrent episodes of vomiting separated by symptom-free intervals or baseline normal health. Episodes typically range from 2 hours up to a week or more. These episodes usually hit in the early morning hours between 12-7 AM. They often drool or spit as they have excessive thick mucus with episodes. They can also have extreme thirst. Many experience intense abdominal pain. Some may have a headache or no headache at all. Other symptoms include low-grade fever and diarrhea. Prolonged vomiting may cause bleeding due to irritation of the esophagus and stomach lining. Another concern is dehydration.
There are no actual tests or blood work that can be performed to diagnose CVS, causing many with it to be misdiagnosed with a stomach bug or food poisoning. GI specialists trained in “unusual stomach issues” look for certain patterns. They will run series of tests to rule out all other disorders or diseases that may cause the same symptoms as CVS before diagnosing anyone with it. Reine’s GI did a blood work panel and also ordered an Upper GI with contrasting dyes to make sure there are no abnormalities in her abdomen and her blood levels are where they should be. He also spoke with us in great detail about her diet, lifestyle, family history, and daily habits before confirming the CVS diagnosis.
Cyclic Vomiting Syndrome is often linked to abdominal migraines. These are migraines are thought to be SO strong that the mind can’t register the pain but the rest of the body does. This is thought to be especially true in children. Reine’s episodes right now only last a couple of hrs. As she gets older, this can change. There is a chance her episodes could last up to a week or more, or she will outgrow her CVS completely, or that she will eventually show signs of “regular” migraines.
There is no cure for CVS. Treatments are VERY limited and currently consist of….
- Medications that may help lessen the effects on the body or stop the progression of some episodes.
- Darkening of the room and limiting sounds to allow the body to rest and sleep through the episode.
- Possible hospitalization and IV fluids.
- Discovering triggers that cause the episodes and eliminating as many as possible.
- Changing diets to eliminate artificials, preservatives, food colors, nitrates, and nitrites (to name a few).
Finally having a diagnosis and an understanding of what is happening with Reine is worth more than I can tell you. We will have to monitor Reine closely for dehydration, making sure her electrolytes are in balance, and a few other things during her episodes. We are now looking for her triggers.