Adam Welling's Story
My name is Adrian and I'm the mother of a now almost six year old boy who had his first episode at 15 months. He was following his cousin down the hall when fell down. He didn't get up and started to writhe on the floor. He turned purple and then blue. He wasn't breathing and he passed out. I called 911 and got ready to try baby CPR. I was so scared! Then he came back. He woke up but was very disorientated. He was crying for me and even though I was right there next to him, saying his name and trying to calm him, he didn't seem to recognize me. Then the paramedics arrived and they whisked us away to the ER. By the time we got there, he was fine. We stayed at the hospital for a long time, while they ran different tests and completed a CAT scan. The whole time we were there, I was ok. I kept my fear in check. I thought I was ready for any diagnosis they could throw at me, until a nurse came over with discharge papers because "there was nothing wrong with him."
That's when I lost it. My baby had stopped breathing! He had a grand-mal seizure! How could there be nothing wrong? They recommended I make a follow up appointment with his pediatrician and sent us home.
The pediatrician was concerned, and sent us to a pediatric neurologist, who did some studies and ran some tests and finally gave the diagnosis of Reflexive Anoxic Seizure Disorder. I had never heard of it. The doctor sent us home with some materials and the assurance he'd "grow out of it."
Over the next couple of months, he had several episodes that ended in seizure. I didn't understand them and looking back, didn't handle them right. I thought it was behavioral, didn't recognize the triggers, and got more and more scared as the only answer I could get was "he'll outgrow it."
Finally, I turned to the internet, and found STARS. STARS was the only group committed to advancing research into this disorder, and after a few emails with Trudie I began to get a better understanding of what was going on with my son.
My son will be 6 in September and hasn't has an episode since May 07. I think that he finally has "outgrown it". I am very grateful to STARS and especially to Trudie, because if it wasn't for this organization there would have been nowhere to turn for support and information.
I am very glad that there is now a US chapter and I hope that more will be found out about RAS and other types of Syncope.