Therese

I’m the contact-person in Sweden for CVSA and on the board for CVSA Nordic.

My son Elias has CVS plus. He has had problems with nausea and vomiting since infancy, but became seriously ill when he was just over one year old. For several years, we practically lived at the hospital. On more than one occasion it was unclear if he would survive. The time between the vomit attacks was very short. At their worst, the vomit attacks would last up to two weeks and restart all over again after just a few days. During these periods he threw up approximately 100 times per day, sometimes even more. The medical team was perplexed and could not make a diagnosis. It didn’t help that Elias has autism, is developmentally disabled, and has epilepsy.

When he was 5 years old, one of Elias´s doctors contacted neurologists in the United States, and could, with their aid, determine the diagnosis of CVS Plus.

What seemed like endless treatments with different medications followed. None of them seemed to have any effect. It wasn’t until Elias was given the drug Clonidine that a noticeable effect could be seen. Clonidine was given to him as a sedative prior to a medical test during one Elias´s relapses. The vomiting stopped.

It is my estimation that Clonidine stops the vomit attacks within a day in 8 cases out of 10.

Elias was also given Trimeprazine, which helps against nausea and motion sickness. Now that he is taking Trimeprazine every evening as a preventive, the vomiting attacks almost only seems to occur in conjunction with severe infections.

Now it is much better. CVS is hell but you can find medications which help. I’m glad we did.