"Look At Me"

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Wednesday, April 30, 2014

Cyclic Vomiting Syndrome and Autism

It is 3:05 a.m.  Derek makes a coughing noise. I instantly wake up, and check him. He's still asleep. He coughs again. I ask if he's ok. I get no answer. I put my head back down on the pillow and try to sleep. 3:10 a.m. Derek gags. I sit up. I ask Derek if he's going to throw up. Too late. Vomit shoots out of his mouth. I pick him up and run for the bathroom. It's not far. I hold him over the toilet as he retches, uncontrollably. This will continue every 10-15 minutes for the next 4-5 hours. It happens almost every month. This is Cyclic Vomiting Syndrome. This is our life.  

I have read a lot of articles that say there is a gut-brain connection in autism.

Since my son has Cyclic Vomiting Syndrome, I tend to agree.    

  1. Cyclic vomiting syndrome (CVS) is a chronic functional condition of unknown etiology characterized by recurring attacks of intense nausea, vomiting and sometimes abdominal pain, headaches or migraines.

I was asked by a CVS group to write about how being on the autism spectrum adds issues or challenges to CVS, so that's what this post is going to be about.

One of the biggest challenges for Derek (and for me) when he gets sick (not just with a CVS episode) is that Derek cannot tell me he is feeling ill.  He can't tell me if he's dizzy or nauseous.  He can't tell me when his head hurts or his stomach hurts or his ear hurts.  I have to watch for signs.  Sometimes he'll pull on his ear or go to bed early or just not eat anything when he is sick.  But, unfortunately, sometimes he does these things when he's perfectly fine too, so I don't really have a good indication that my son is sick unless he has a fever or is vomiting.

When it comes to CVS, most people have some indication that an episode is coming on. Some people see an aura.  Some become more sensitive to lights or noise.  Most have stomach pain or headaches or both.  I don't know if my son experiences any of that.  I am assuming he does, but since he is autistic and has sensory processing disorder, I know that he's sensitive to lights and noise and crowds and tastes and smells all the time anyway.  So is it even more extreme before a CVS episode?  I don't know.  Perhaps.  I wish I could ask him.  No.  Strike that.  I wish he could answer.

I do know that when he is in the middle of an episode, and he gets vomit on himself, he can't stand it.  He freaks out because the vomit is wet and gross.  He doesn't like the way it feels to vomit either.  He cries and asks me for help.  It breaks my heart, because there is nothing I can do.  He also is extra sensitive to the feeling of fabric on his skin and wants it off immediately.  He prefers to be completely naked, and in between rounds of vomiting, he sleeps on the bathroom floor on piles of blankets and towels.

We have been lucky.  Derek hasn't had to be hospitalized yet because of dehydration.  I dread when he is more than you can possibly imagine.  Derek can't stand IV's and will most likely yank it out of his arm.  He also hates wearing hospital bracelets.

On the plus side, medication has helped Derek tremendously.  At one point he was having episodes once a week.  Now he has them maybe once a month; if we are lucky once every two months.  I'm also hoping that as he gets older and more aware of his body, he'll be able to tell me when he's feeling sick, and he'll be able to take the appropriate "abort" medicines to avoid episodes altogether.

I cross my fingers that the episode is over. 7:45 a.m. Derek is asleep on the bathroom floor. His face is white as a sheet. I carry his limp body to the bed and cover him with a blanket. I kiss his clammy forehead. I wish I could sleep too, but I have about 5 loads of laundry to do. Vomit laundry. The bathroom is trashed. I also have to get Tyler to school. My day has just begun...


  1. Going through this with my ASD teen, so heartbreaking. Feel so helpless. Curious what mess does your son take? Take care and hugs to you both .

    1. He takes 10 mg of amitriptyline as a preventative medicine. It has worked really well. He also takes zofran in the middle of an episode (if I can get him to take it).

  2. We are going through this too. Once a week my 7yr old ASD/ADHD son gets a headache then a fever then spends the rests of the day and night vomiting. I've been thinking it was Ritalin related but now that he's off that and still having these episodes I'm wondering if this is what it is.

  3. Just wondering does he ever develop a red rash all over his body when the episodes start?

  4. Our son is now 14 has not had a CVS episode since he was 7. We had him tested for asd but I guess we were borderline but now shows emotional stress and signs of asd in outbreaks can't control anger. Wondering if anyone is going same with CVS also. When my son would have an episode we had to get an IV or the episode would not stop but the emergency room would not listen to us at first. But by the thrid episode they would open door for us and start an IV and zofran in the line as well. Lucky for us because we got to know that ER really well for 6 years. I know how all CVS parents feel especially when you haven't figured out that CVS is your child's problem. When they have to test for everything else first. To rule out the other problems first. Our son would get a episode the next day if we want to a birthday party or Christmas or anything that over stimulating we found or if he got really upset. I'm glad I found your blog the pictures of your bathroom bring back memories of our episodes keep up the good work mom we know it is not easy for either of you!!