When my daughters were two weeks old, one of them (who had been having feeding difficulties) was given a vitamin D supplement which made her throw up what must have been most of what she'd eaten that day. I fed her a little bit, but she was obviously exhausted so I put her down for a nap. About twenty minutes later, I heard an odd noise and when I checked on her, I was frightened. She had her neck fully extended and back arched and when I picked her up she was rigid as a board. Her face was red and I couldn't detect breathing movements. I gave her to my husband (he was an EMT) and a moment later she was breathing and reactive again, but we were terrified. So..... we wound up spending a long weekend in the Children's Hospital while they ran just about every test imaginable (poor baby) to come to the conclusion it was "An isolated autonomic event." IOW, they have no idea, but so long as it doesn't happen again, we shouldn't worry too much about it.
Recently, I came across the Princess Leah Blog. I am a Star Wars Fan and the story of the Star Wars community rallying to help this family touches my heart. Reading about this little girl, my heart breaks. Leah has "seizure-like" eye and body movements that are so severe they keep her from sleeping. They've been trying a variety of medicines to control her symptoms, but no diagnosis. She's been in the hospital for most of her four months of life and they STILL DON'T KNOW what is causing her movements. I can't help but think how close this was to being my story.....
So, my questions are: 1. Do any of you have experience with un-diagnosed, seizure-like activity in your infant? 2. Please pray, hope, meditate for the family of little Leah. My daughters, thankfully, are nine-months old and thriving. Leah is in a daily battle to breathe.
We just got back from my daughters' nine-month checkup and am happy to report they are both doing very well. My daughter with the "unexplained event" never had anything like it again. My husband posited that perhaps the vitamin D causing her to vomit triggered an electolyte imbalance that caused her system to go haywire. After all the tests came back perfectly fine, the neurologist was inclined to agree with my husband. He said it made about as much sense as anything else he could offer. We've never given her that vitamin D supplement again and she's never thrown up like that again. I count that a blissfully closed chapter for me.
My experience simply opens my heart all the more to little Princess Leah and her family. Here is a link to her parents' blog if you are interested in learning more about their story.
My nephew had 1 seizure which was very frightening for my sister. My sister had to wake him up to go pick up her husband whose car had broken down. Like you, the tests were normal and doctors said it was an isolated event and not unusual to see seizures in events where children/babies are exhausted or woken up from a deep sleep. This was well over a year ago, and he has not had another incident. I will pray for that family.
Have you had a follow up with your pediatrician? Have they given you a referral to a neurologist? I'd start there. I know that much have been terrifying, I'm so sorry. Just remember, babies are resilient... hang in there :) Keep going to doctors until you have answers, and thank GOD your husband is an EMT... hopefully he can teach you what to do if he's not there. *HUGS*
My youngest brother had seizures when he was a baby. We never knew for sure why, but he had a lot of problems besides that. It was scary to walk into his room and find him having one. In the years I had daycare, I had 2 girls who had seizure disorders. One of them (about 3yrs old)had several a day, and I had to give her phenobarbitol 3 times a day. Shed have a seizure while I was on the floor with her trying to talk her into taking the tiny little sip of the meds. Her seizures consisted of staring off into space, sorta zoning out, and slowly turning in a circle to the left. They lasted about 10 seconds but then when shed "come out of it" Shed be cranky and upset. There were times I didnt see her have one, but knew she did because all of a sudden shed fuss, and slap another kid near her. She was diagnosed with a really rare problem (tubular sclerosis) that was thought to be fatal by the time she was a teen, but shes 31 now, married and has a little boy, so,, maybe she beat the odds. The other child was born with severe physical and mental problems and I only had her a few times. One day (about 8 months old)she just looked and sounded like she had the hiccups, but after several minutes, and a little bit of bottle, she still had them and her body was more involved than I thought was normal so we called her M.. She is about 11 now and has never really advanced past infant stage in many ways. It is a hard thing to watch, and sometimes its a one time thing, others it lasts for years. Poor little Leah. I will keep her in my thoughts.
My daughter would arch like that with her neck extended and go rigid, red faced and holding her breath. It happened a couple of times as an infant. She would cry before it happened. She had severe acid reflux and it was her reaction to the pain. Once she was on proper medication, all dairy was removed from my diet and she was inclined while sleeping, things improved and it did not happen again. It was very scary.
What you described doesn't sound like a seizure. Arched back, straight as a board, red face, plus the vomiting of her meal is classic severe reflux. You need to take your daughter to a Pediatric Gastroenterologist. They can get her on appropriate medication such as liquid Zantac for babies if she's still having reflux episodes.
My husband's family has a long history of Seizure Disorder including gran mal seizures, petit mal seizures, and everything in between. My middle daughter (8 years old) has absence seizures much one of our nieces who is now outgrowing them at 16 years old. Seizures are very different from what you're describing, and I'm quite surprised that no one on your daughter's medical team thought to check her for reflux or GERD aka silent reflux.
I found my daughter like that (stiff like a plastic baby doll) when she was two months old. Her lips looked blue, but she came to and seemed fine. She too spent a week at the children's hospital for tests to be run. They said her heart and brain scans looked fine, and they put her on an apnea monitor until she was ten months old (she is four now.)
I pray for little Leah and her family.
