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...

The Cowboy

We went to a wedding this weekend.  Not just any wedding, but my sister-in-law's.  Some parts of it were good and some parts of it were not so good; after all, I had a 6 year old and an 8 year old with me and sitting through a wedding ceremony was no cup of tea.  Both of them were bored and antsy.

However, I have to tell you about something that happened at the wedding.  Something that I thought was incredible.

There were two horse-drawn carriages to take people from the wedding to the wedding reception.  Derek was fascinated by them.  Every time one of them came around the corner he would gasp and say, "Der dey are!" Then he would run as fast as his little legs would carry him up to the carriage and try to jump in.  I had to be on my toes and grab his arm so he wouldn't get run over.  He was that excited.

The carriages were driven by real, live "Cowboys"-- or at least that is what Derek called them.  And they were nice enough to let Derek have several rides before the wedding even took place.

Halfway through the wedding ceremony, Derek decided he had had enough of the wedding and he wanted to go back to the horses.  He ran over to talk to the Cowboy.  He plopped himself into the seat next to him and started chatting away.  When the Cowboy asked him what his name was, he replied, "Peter Parker."  So I explained his obsession with Spiderman. Then Derek saw a number 4 on the side of the house (it's the Haythorn Ranch logo).  So he started counting things.  He discovered that there were 4 horses total and started flapping his hands.  The Cowboy told Derek about the horses.  He also let Derek pick up the reins and didn't even mind that Derek tried to make the horses go forward.

After a while, the Cowboy turned to me and said, "He doesn't miss a thing, does he?  He's autistic, right?"

Surprised, I said yes.  I mean, I wasn't surprised that he knew there was something different about Derek, that's pretty obvious.  But I usually volunteer the information.  Most people don't have the guts to ask.  It's kind of like asking someone if they are pregnant--what if you are wrong and insult someone by accident?

He then told me about a kid he knew growing up, who was also autistic, and reminded him of Derek.

The Cowboy asked Derek lots of questions and Derek answered the way Derek does--sometimes with a single word, and sometimes with a response that had nothing to do with the question.  (He asked how old Derek was and Derek told him "Spiderman.") Sometimes Derek didn't answer at all.  But the Cowboy didn't care. The Cowboy seemed to know exactly how to talk to Derek and what to say. 

I watched the conversation take place with tears in my eyes.

Too often I run into people that look at my son as if he is a bug that needs to be squashed.  It was wonderful to meet a man that wanted to talk to Derek.

Thank you, Cowboy, for making a little boy's day.  He is still talking about you four days later.