They began last summer before he turned 2, he was probably about 18months old. My son was laughing and playing outside, pretending 2 race..my friends and I were cheering him on. All the sudden he ran over to me I was sitting in a chair and he laid his head in my lap, then he slid off onto the ground. We all thought he was playing bc he's very dramatic, but a few seconds later I saw that around his mouth was blue. At the same time my friend saw it to and scooped him up and said to call 911. While waiting he went unconscious about 5x in a row, he was so white we couldn't tell the difference between his face and his lips. He was limp as a noodle and unresponsive and breathing very shallow. When paramedics arrived he was fine other than the fact that his color wasn't all the way back and he was lethargic. All vitals were fine by then but we rushed him to children's anyway. They checked him out and said he was fine and had held his breath 5x in a row till he passed out.
This type of Episode happened 4 more times since then and we became concerned that it wasn't breath holding bc he didn't match the characteristics of a breath holder and so we took him to a Neurologist and had him tested for seizures or any other issues connected to his brain. Everything came out perfect although they definitely ruled out breath holding and seizures. They sent us to a Cardiologist and he has tests run on his heart as well as a sonogram, all of which came out perfect. They don't have a clue whats going on, but don't want to see him again and also recommended we stop calling the paramedics or at least wait several minutes. 3 of the last 4 episodes were fairly minor, but the 4th which just happened Friday, was very long and very bad. He was basically unresponsive, barely breathing and at times looked as though he wasn't breathing at all. His eyes were half opened and twitching back and forth...almost as if they were shaking. I kept talking to him while his dad was on the phone with paramedics bc I didn't want his eyes 2 close, it was like he was falling asleep. I was scared he would go into comma or die. Finally I started talking about things he likes and holding his feet up and bending them at the knees and he got mad at me and snapped out of it. This happened a minute before paramedics arrived. His color came back almost immediately and all vitals were fine. The blood pressure has been very low during these episodes as well but quickly after he snaps out of it w/in 5 min its back to normal.
These episodes are VERY scary, No one we have gone to has a clue whats wrong. The Episodes occur only when hes happy and playing. He knows they are going to happen so before he keel's over he comes to myself or his father. He also says his feet hurt after them. He also gets very upset if someone talks about it with in earshot.
Thanks for your help
That sounds terrifying! I don't have any experience with this, but I wouldn't take no for an answer from the doctors. There HAS to be an answer and someone who can help - if the cardiologist can't, then make him give you a referral to someone else.
I don't have an answer either sorry:(. My only suggestion (though it may not be easy) is try to video tape them if you can. I know in the moment it's probably too scary to think about, but if you can carry a small camera in your pocket to have when this happens, it's right there. This way you can show the dr's what you're talking about. It's sometimes hard to convey to a Dr exactly what is going on, and maybe they will notice something his body is doing that they overlooked before.
My son did have the classic breath holding till he passed out episodes when he got hurt or very upset. Seeing blue lips on your child is terrifying. For him, some vigorous back rubbing "woke" him back up, but it was scary every time it happened. He has outgrown it now, and it sounds like yours is much different.
Wishing you luck, that you can figure this out.
My nephew went through pass-out spells from the time he was 8 until he was about 13. He would pass out and be unresponsive. They couldn't figure out what was wrong and the doctor thought he would grow out of it and it appears he has. It usually happened to him when he had his head hanging down and was maybe a blood pressure thing. It happened at school while he had his head on his desk and all the other times it happened in church while he was kneeling.
I personally think that a mother's instinct is best. My son has had some health issues that another pediatrician disregarded and they ended up being wrong. I would encourage you to keep looking for answers and to get a second, third, fourth, etc opinion until you find the answers you're looking for. Has anyone suggested he see a neurologist ( the eyes twitching back and forth )? Is there something similar to a "stress test" that can be performed on young children? Just keep forging ahead and always listen to your intuition. His feet hurting should be a clue and it will come in handy to the right doctor. Please do call his doctor about his last episode. You may want to see if you can find a pediatric neurologist. The fact that his eyes were twitching and it seemed to increase in severity should motivate them to either see him again or refer you to another specialist.
Good luck to you.
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