Monday, September 23, 2013

WE HAVE A DIAGNOSIS!!!

Last week Jacob's GI called us back and we now have a diagnosis, he has Cyclic Vomiting Syndrome (CVS) also known as functioning vomiting. I've been doing a lot of research on it and we are extremely lucky!!! Most kid start having episodes between ages 3-7, but don't get diagnosed for a couple years, they have to pretty much rule everything else out first. Also many have extreme vomiting that's close to nonstop for days and end up in the hospital from dehydration and are incapable of keeping any medications, food, or fluids down. Along with the vomiting they seem to get a lot of severe migraines and sensitivity to light. After having an episode the are exhausted and need a lot of rest. Jacob does get some stomach cramping before vomiting like the other whom also have CVS but his only lasts for minutes (or less) while others suffer sometimes for hours.

The many things that Jacob has that other suffers of CVS have is some stomach cramping, the vomiting and of course that it seems to happen in a cycle. CVS sufferers tend to have attacks at the same time of day everyday and for about the same amount of time. Along with some of the triggers that effect other like eating cheese, only his is when he has too much cheese or cheese too many days in a row. Anxiety and excitement are also triggers for him; which would explain why running with his friends during recess would lead to him having an attack. Some people are triggered by chocolate, but I haven't seen this in Jacob yet, we normally don't eat much chocolate.

Jacob has never had a migraine as far as I know. He usually only vomits once or twice when he has an attack. His attacks has never exhausted him, usually after getting sick he'll continue whatever activity he was doing almost without missing a beat. His episodes recently have been just before bedtime and last approximately 1 1/2 weeks then he's episode free for about 3-6 weeks. Now that we know cheese is a trigger for him, I watch his diet more closely to avoid over doing it (he's like a little mouse, he LOVES cheese). Trying to have him not get to overly excited while playing is going to be challenging; he is a 7 year old boy, it's kind of what they do. He is aware that it is a trigger for him and I've been trying to help him remind him when he needs to slow down.

The onset of Cyclic Vomiting Syndrome can be at any age and can effect males and females. It was considered a rare syndrome, but it sounds like it becoming more common. I'm still trying to learn more about it. I'm just thankful that we now have a name for what has been going on with him, and that we're not alone.

I think by keeping a food journal and journaling when his episodes occurred helped in getting him diagnosed so quickly. That even before his first GI appointment we had checked for sensitive's or allergies to food though elimination diets. Jacob did have a couple misdiagnosis that others with CVS also had like acid reflux, seasonal allergies (or drainage from seasonal allergies).

He now take an antihistamine 3 times a day along with ginger root extract to ease his symptoms. There's no "cure all" for Cyclic Vomiting Syndrome. There are some research groups out there who are looking for answers and better ways to help those who have CVS.