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From: A scared Mom
My daughter is 6. At 18 months she had her first Vaso Vagal episode and to this day, I cry reading your stories, for it brings back the horror of what I went through. I think the worst was not the episodes themselves, but the lack of doctors concerns, and the idea that they perhpas thought I was a neurotic mother, and nothing was wrong. My pediatrician was on a month long leave. He knew me for 10 years. This whole story may have turned out differently. I don't know. But I did know what was happening...My daughter was going limp, turning blue, and not responding. By the time I called an ambulance, or got help, she seemed to recover. After these episodes, she was lethargic. It started when we were camping...in the middle of nowwhere. She woke up, and came to me, and I thought layed down. I tried to talk to her and realized she was limp. Her eyes rolled back into her head. Her lips turned blue, and as I ran carrying her to the top of the campground at 6:00 am screaming for help, she "came around". She was very sick. The biggest thing I remember is that she "gazed" right through me. She would not focus or respond to me after. She was pale, and vomiting. At the ER - they performed sugar tests, EEG, and a ton of others. All came back normal. Now, they are looking at me like I am a fruitloop. I followed up with her fill in pediatrician on Monday, and she honestly looked at me and said "what do you want me to do?". They observed her for 24 hours. But I was a laughing stock on the floor. I was devastated. I wanted to go to walk out of the hospital and find another doctor, and my insurance company denied me. Now, I believe Shelby had a terrible virus, and it brought on the worst of the episodes. I was told she was having seizures. After a couple more episodes over the next few weeks, she was almost put on seizure meds. One doctor advised against it at such and early stage. Which I am thankful for now. He was an on call doctor, and I don't know who he was. During these few weeks, Shelby would scratch her toungue. She became physically different. Her eyes gazed. She repeated sentances to me {she normally talked well} Her toungue was "in the way" when I tried to give her a binky. I allowed my daughter to have her binky until she was 4, because that was the first sign of an episode. I slept by her side. She would wake in the middle of the night, begin to get up, and pass out. It was always followed by vomiting. Now she has been diagnosed with Vaso Vagal. It was only about 3 years later, that we realized, the vomiting brought on the episode and I stopped calling it a result of the episode. And it was only Thanks to an ER nurse who FINALLY saw what I was seeing. They were about to discharge her, again, after not finding anything. The nurse gave her a popsicle, and said eat this first, she got half of it down, and began the "vagaling" episode. She spent 4 days in the hospital. I was about to crack at this point. I thank God that finally someone saw what was happing. Now at 6 years old, when she gets a virus or vomits, we have to "talk" her through it. I hold her up, because she has fallen many time and smacked her head on the tub, or floor while vomiting in the toilet. I have to remind her to breath while vomiting. But the episodes are not so bad as when she was an infant. Perhaps because we can talk her through them. When she does pass out, she knows it. She can focus and concentrate now. But I still worry at night, because twice she has woken up in the middle of the night, and passed out on the floor - I let her sleep with me because I am afraid I won't be there to help her, and she could choke on her vomit. It's all very scary. I hope Dr.Herr, you can help others, and no Mother will face the hell I endured.