Cyclic Vomiting and unneeded texts
So I want to start by saying “Hello.” I am new to this platform and looking forward to learning and interacting with others.
Cyclic Vomiting Syndrome is also known as Abdominal Migraines.
For the record I am not a doctor or nurse. I am a former EMT but what I’m writing is based on mine and my sons story along with some things you can try to get the treatment you need.
My son was 3 months old when he started vomiting nonstop for weeks at a time. I’d take him to the doctor and was aways told that he had the flu! Urg! This was happening every 3 weeks like clockwork. Well it doesn’t take a genius to know that if something happening this often and he’s Vomiting 30-40 x’s power hour for 4 days, it’s clearly not the flu. So I did what I learned through all my years in the medical field. I started documenting Everything!! From the moment he woke up until the moment he woke the following day. I wrote down every wet diaper, dirty diaper, wake up times, play times, everything he ate and so on. I had to do this everyday no matter what. I wanted to be able to take him to the Dr and have everything on paper so I wouldn’t keep hearing it was the flu.
During the time of logging everything I noticed a pattern. My son would get constipated and I would have to give him one of the baby suppositories. Remember this is all between 3 months old to age 2. After the suppository was in he would immediately start crying this horrid cry and I could only hold him and cry with him. He would push so hard that his face turned bright red and he would shake uncontrollably while having that pain scream that you’ll never forget.
I finally decided to go outside my health insurance network and to a Pediatric Gastroenterologist Specialist. I walked in with baby in tow, explained to the Dr everything and handed him two years of daily logs and episodes.
Within about four pages the Dr looked up at me and said “Your son has CVS” and went on to explain it to me.
Here’s the 1st thing and most important thing he said to me, “There is no test available For CVS patients. Many don’t get diagnosed for years and years while having every awful test known to man is being done to them. Don’t subject your son to these and tell every Dr he sees that he has Cyclic Vomiting Syndrome period.”
I also learned that women who suffer from migraines have a higher chance of there Child having CVS. I explained to the Dr that I have migraines every month and that are hormone induced. I would get one the days before I started my period, 3 days and 3 days after. I had been that way since I was 12. If I couldn’t break the migraine then it would stay until the following menstrual cycle. I was shocked to hear the Dr tell me that I actually had CVS also.
This is where he told me MOST DRS DON’T EVEN KNOW ABOUT CVS. My son is 23 now and hasn’t cycled in awhile but he grew up cycling every 3 weeks. I learned that the moment he would vomit were just needed to go to the ER. 30-40 x’s an hour for a week isn’t safe. At first the ER Dr would say it was the flu but on one visit it was a different Dr. I told him my done diagnosis and he was pretty familiar with it. So up until 8 years ago, when I would have to take him to the ER, the Dr made a huge note in his chart as to what he had, the symptoms he presented with and the treatment. Got to the point I’d just tell the drs so they didn’t have to go through his large chart.
So speak up if you have been diagnosed with CVS. Tell the drs they can find the information on an app they often use called MedScape. Chart symptoms and times and so on. Always try to bring in what you’ve worn down. You know the difference between what the flu feels and looks like vs am episode so don’t let yourself get bullied. If you know your treatment that works tell them. And most importantly, CVS patients are looked at as drug users with withdrawal symptoms but no drugs show on a test, and are turned away. ALWAYS ALWAYS if a Dr says no to you, for instance you know the treatment for yourself but Dr refuses to do it, tell your Dr that you want it logged in your chart that you asked him for (whatever it is) and that he refused. Then tell them you need a copy of it before you leave.
I apologize for any and all errors