Just wondering about everyones experiences with seizures? Sabrina had her second a couple of days ago and spent another two nights in hospital. This one was alot like the first, started with a blank sort of stare followed by twitching in her face, then her body too. I called the ambluance straight away and got her to hospital. By the time we got there she had gone blue and was struggling to breathe. So all together it lasted around 30mins. I find them extremely scary. I hope she never has another one, but I doubt that’s going to be the case!
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My daughter, Kaylee, is 9 months old, and she has been on Keppra for seizures since May. Hers have been mostly eye blinking and/or mild head jerking that lasts about 5 seconds. However, she did have one at daycare a month ago that lasted longer– she started to turn blue but was stabilized by the time the ambulance came for her. I still see some head jerks now and then, but it is frustrating because each time we go in for tests, they do not see any actual seizure activity. They only see “spikes” of electrical activity on the right side of her brain that they say makes her prone to having them. This is the scariest of all the syndrome issues for me– I just hope that the medication is doing its part to keep any she does have to a minimum. I will pray that Sabrina outgrows them quickly– I am told that most children do. In the meantime, I think they will be recommending some medication for her as a preventative, if they haven’t already. Lots of luck!
Riley had her only seizure this summer, when she was 17 months. We were actually at a neurology appointment when it happened and it lasted 3 minutes. She never had trouble breathing during it and came out of it on her own. It happened about 15 hours after she had received the DTaP vaccine and she did not have a fever. Riley is also on keppra and has done very well on it. No seizures since and no side effects. She has had 2 EEGs and both were completely normal. Seizures also scary me, I pray that Riley had her only one and is done with them.
I’m sorry you had to deal with this. I’m glad Sabrina is okay and home now. We pray for no more seizures for any of our babies!
Hi, my daughter Emerson Paige (“Emmy”) is 3y, 3m old. She began seizures at the age og 9-months. Her first was 1 hour 30-minutes long. She quite breathing was given multiple does of atavan, versed & phenobarbitol to stop it. She was intubated and was flight-for-life air lifted to San Diego Children’s hospital. She has had 6-7 major seizures he longest almost 2 1/2 hours. The last 2-seizures we had diastat to give her and she did not need to be hospitalized. She for the most part has been well controlled on phenobarbitol. She does now and again still have what I call “mini-seizures” that last only a few seconds to maybe a couple of minutes. Mostly only a few seconds (3-15 sec) with no mayjor problems infact none really other than the momentary seizure. As she gets older it appears that her seizures are better controlled and mybe even starting to outgrow them. Seizures are very scary. Not to scare you further we personally know WHS family that their little girls longest seizure was 6 1/2 hours! It varies so much child to child. Many of our WHS kiddos don’t have big major seizures but have ones that last just seconds but all day long. Sabrina is beautiful! I hope her seizures are controlled early on and outgrows them quickly… because they are difficult for everyone! But our kiddos are strong little fighters and she will always amaze you 🙂 hang in there…. it does eventually get better! – Janell
If you can, ask your doctor if you can keep Diastat at home to lessen the seizure time. This has helped us tremendously with Amelia’s seizures.
Our Granddaughter, Isabella Rosa, is 3 months old and has had seisure like activity for approx. 2 months. All tests show no seisure history. They were mild at first but have gotten severe lately, to the point of not breathing and had to be intabated and hospitalized. She is limited as to what they can give her because of severe heart problems and small kidneys. Any info. on this would be greatly appreciated as it seems like the Drs. are trying to do all they can but at times don’t really know what to do. The Miracle to this is that she was not even supposed to live when born but she has proved them all wrong and continues to amaze all the Drs. with her will and determination to live.
I agree, watching a child have a seizure is awful, but hopefully her doctor will find the right medication to control them. A regular daily routine also helps.