I kinda want to share my story to get it off my chest. So that maybe when I close my eyes it will quit replaying over and over.
So Wednesday night I bathed DD2 and put her to bed at 7:45 and she was totally normal. About a hour later she woke to nurse and I noticed that her nose was a little stuffy and figured she was getting the cold that is going around.
At 9:50pm I was texting back and forth with my brother in the kitchen and I hear a animal like noise but it is DD2 voice. I run into the bedroom to find her on her stomach having a tonic-clonic seizure. I pick her up and her lips are blue and her eyes are half open and shifted to the far side. She is making the weird -I can't breath noises-. I Run her to DH and call 911. DH thinks she stops breathing and is still holding her. She is ending the seizure by this time and is just twitching every now and then still making the weird breathing sounds. I lay her on the floor to asses if she has a air way. ( I work at a hospital as a monitor tech, cardiac is my thing and I know cpr. I have been there 11yrs and used to work the floor and have seen lots of seizures. All of this up till this point in the story is "normal" for a seizure that I have witnessed.
So she is now laying on the floor waiting for the ambulance to arrive. Her lips are still blue, hands clenched and her fingers are blue. Her eyes are closed and she is unresponsive. She is breathing but barely, very infrequent very shallow breaths and grunting on exhale. As the paramedics come in (maybe 5 to 7 min after I called) she lets out a cry and throws up and is back to being unresponsive.
We load into the ambulance where they put a pulse ox on her finger, check her temp (none) and o2 on her and the whole ride to the hospital (20 min) she is blue pulse ox in the 70's hands clenched doing the barely breathing. As we are turning the corner to the hospital she starts crying and her color comes back of course but she doesn't know who I am.
Once in the er they check her temp. She now has a fever of 103.3. We knew she had gotten a fever in the ambulance because they checked it several times as we noticed her body heating up. They did labs and a chest xray. They then said it was a febrile seizure and wanted to send us home. She had not even woken from the deep sleep that they go into after a seizure. All her labs came back normal. I told them I was not comfortable returning home 30 minutes away with out knowing why she seized and that I didn't think it was a febrile seizure. They admitted us for observation.
We got a room around 3am and DD2 finally woke up and knew who I was again. She seemed normal from then on out. They did a ua that morning and it came back clean. I have since taken her back into her dr and had the full ambulance report and after seeing that he isn't convinced it was a febrile seizure and we are seeing a pediatric neurologist.
My question if you made it this far is the "not breathing" thing for that long after a seizure 'normal'? I have never witnessed it and that has me more worried than anything else.
DD has no health issues and while we have epilepsy on both sides of the family (my brother and DH cousin) she has always been healthy. What is your thoughts and what are some questions you would be asking.
~Katie~ married to J, mom to DD- A 13 yrs ,DS- L 7yrs , and my little nursling DD2- R 5yrs.
Good for you for knowing how to monitor/assess her until the ambulance came, for being so clear about your safety concerns when the hospital wanted to send her home, and for getting the referral to the pediatric neurologist.
I know very little about seizures, but that was some good work on the mama bear front with the hospital. The low pulse ox would worry me. Do you think the low pulse ox might have been a result of a weird interaction between the seizure and the respiratory infection?
I know almost nothing about seizures, but my ds DID have a febrile seizure last summer, and it was terrifying - so I know that feeling! Thing is, my ds got the fever right when he had the seizure (his fever was 105.5 immediately following the seizure), so I'm not sure that your dd having a gradual increase in temp is indicative of a febrile seizure either. From what I was told, its only febrile if the very rapid rise in body temp. is what causes the onset of the seizure.
I'm glad you're going to see a pediatric neurologist, b/c almost nothing about your dd's seizure sounds like my ds's seizure. He had full body convulsions, but was breathing the entire time (never turned blue once, and was being monitored by his pediatrician since it happened in her office waiting room - we were there b/c he wasn't feeling well), and had a normal pulse the entire time. Then we transported to the hospital by ambulance, and he had a second, shorter, seizure as soon as we got there. Scared the life out me, but after a night in the hospital he was OK.
I hope your dd is OK, and I hope you're OK too. It was the scariest moment of my life, and so terrifying knowing that I couldn't actually DO anything.
Your description with the breathing sounds pretty different from any I've seen working in nursing or with special needs kids, many of whom have seizures. I think it's really good you're seeing the pediatric neurologist, especially with epilepsy in the family. I think in your shoes I'd also want a respiratory follow up, too, just to cover the bases. Some infections hit some kids harder than others, and you really can't be too cautious when it comes to breathing.
I really hope everyone's OK. It's really so scary. Let us know how she's doing when you're all OK and you know more.
Busy keeping up with three children and an awful lot of chickens!
I just wanted to send you hugs here. I had grand mal seizures as a kid, and they were SOOO stressful for my parents. Of course you want to write this out, it could be like therapy to help you get through it. If you want more concrete, technical answers, I think you need to post on a medical forum. I don't think people here are going to know, unless they are in the medical field. I hope you have lots of support though; sounds terribly worrying and stressful. So sorry for your whole family.
I can't imagine how horrifically scary that must have been for you. You're going to need a lot of time to process this.
You might want to post on the Special Needs boards too -- I think there are a couple of families there who've dealt with epilepsy and they might be able to give you insight. I think your instinct to have this followed up is a good one, and I hope they have some answers for you.
That sounds so incredibly scary. I wanted to tell you I had one random unexplained seizure when I was a year old, they had to inject something into my temple to make it stop after my parents drove me to the hospital (mom figures it lasted 20 minutes) The rest of my life, no seizures. I hope it's the same for your DD.