One of our members asked us to publicise a terrifying experience with CVS.
A young child with CVS was admitted to hospital and put on i.v. fluids. After several days the child was rushed to intensive care, put on a life support machine for a short time, as a result of a fit induced by electrolyte imbalance. The hospital has admitted that the electrolytes were seriously out of balance, because they had not been routinely checked and levels corrected, as they should have been. We know of several other CVS patients whose potassium levels, in particular, have become dangerously low, before being recognised and corrected.
CVS patients who have lengthy, severe episodes can quite quickly develop electrolyte imbalances. Simple U and E (Urea and electrolyte) tests are given routinely when admitting vomiting patients to hospital and i/v fluids are supplemented with potassium etc depending upon the results. Deficits can very easily be replaced and there is no danger to the patient. However, for patients severe enough to be in hospital, it is essential that electrolytes are routinely monitored throughout the episode; many need supplements to the drip above the normal maintenance levels.
Unfortunately, as experience has show you can’t rely on these routine tests being carried out. If you are the partner, relative, parent or guardian of a CVS sufferer……ask…make sure these tests are carried out. The child in this case was placed in danger when it was entirely preventable.