A trend has been emerging in the White Sutton Syndrome (WHSUS) community recently. Caregivers have indicated that quite a few individuals with WHSUS also struggle with recurring vomiting episodes. In our small, informal poll we found that at least 25% of respondents reported chronic vomiting was their biggest medical challenge in 2018. Some have been diagnosed with Cyclic Vomiting Syndrome (CVS) while other undiagnosed individuals struggle with chronic bouts of vomiting that don’t seem to be connected to a stomach bug or any other obvious medical problem.
Cyclic (or Chronic) Vomiting Syndrome is defined by the Genetic’s Home Reference (2018) as “a disorder that causes recurrent episodes of nausea, vomiting, and tiredness (lethargy)“. It most often presents in children, and in many cases the symptoms may diminish or evolve as children age.
Multiple medical studies (Boles et al., 2010) have indicated that CVS can be effectively managed with medication. Medications used in managing symptoms include cyproheptadine, amitriptyline and the nutritional supplement Coenzyme Q10 (CoQ10).
Our son has struggled with these episodes. So has Lindsey, one of the kids we featured recently. And here’s the interesting thing: our doctors recommended that we put our son on a maintenance dose of cyproheptadine to help prevent the CVS, and that we give him both promethazine and acetaminophen at the onset of a vomiting episode. This has helped us stay out of the hospital on multiple occasions just this year. Lindsey’s doctors put her on migraine medication, which seems to have helped largely resolved her struggles with CVS. I’ve also seen anecdotal accounts in our Facebook groups mention similar treatments using “headache” medications. Why might these treatments work?
The connection (and the efficacy of the solution) becomes more clear as you read further in the Genetics Home Reference (2018) article about CVS. According to the article, “Cyclic vomiting syndrome is likely the same as or closely related to a condition called abdominal migraine, which is characterized by attacks of stomach pain and cramping.” Yes, that’s right: it’s very possible that these are “stomach migraines”.
What This Means for Us
While I can’t speak for the community at large, this has been a revelation for us. Our son has difficulty communicating all of his physical symptoms, which makes it hard to know when he is having pain. We didn’t know these episodes were painful for him until we asked him. Many with WHSUS have similar communication barriers. Understanding what’s going on with his condition and treating the symptoms we didn’t know were there has made dealing with these episodes much less stressful. Having a treatment plan in place when symptoms arise has replaced our former sense of panic with one approaching peace. Saying farewell to repeated hospital stays has been our family’s greatest victory, and one we had all but given up on winning.
Medical literature does not yet explicitly recognize CVS as a symptom of White Sutton Syndrome. This said, the episodes our kids are experiencing might be classified as abdominal migraines. There are many treatment options for children with CVS. We would never recommend that you begin a medical treatment without first consulting your child’s doctors. However, given the evidence that seems to be emerging, it is definitely worth having a discussion with your doctors if your child is struggling with repeated vomiting episodes.
Finally, a word of warning. Much of the medical literature about CVS indicates that these abdominal migraines often evolve into head migraines as children age. Taking into account the communication barriers kids with WHSUS often have, severe headaches can be tricky to recognize. Observing your kiddo carefully and doing everything you can to ensure that they are prepared and equipped to communicate any pain that they are experiencing is very important.
Included in the resources below is a PDF with very thorough documentation of CVS from the National Digestive Diseases Information Clearinghouse, for those who would like to learn more general information about CVS. While not cited in the article above, this document is a useful resource we thought it would be helpful to include.
Genetics Home Reference (2018). Cyclic Vomiting Syndrome. Retrieved from: https://ghr.nlm.nih.gov/condition/cyclic-vomiting-syndrome
NCBI (2018). Treatment of cyclic vomiting syndrome with co-enzyme Q10 and amitriptyline, a retrospective study. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2825193/