Judy - posted on 04/20/2011 ( 7 moms have responded )
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My 14 year old autistic son started having seizures (about 1-2 per month) a year ago, and I feel like I am always waiting for it to happen. If he is still for a moment or staring into space daydreaming, or if he doesn't answer me the moment I call him, I go racing to him to make sure he is okay. This is unhealthy for both of us but the seizures scare me unlike anything I've ever experienced. Does anyone else feel this way?
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Jenny - posted on 05/23/2011
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u r not alone my 3 yrs old has siezures and mostly in his sleep so i hardley sleep just waiting 4 the next one
Marnie - posted on 04/24/2011
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Yes I feel that way all the time.My daughter is 21 and still lives at home and shes been having siezures for 3 years now. It never gets "routine" to see it happen. I never know how to react and most of the time I end up feeling so bad for days after it happens. I just feel stress and worry all the time.
Lisa - posted on 04/23/2011
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Hang in there Judy :) Us Moms do all we can to take extra precautions and to make sure they're safe, but in the end that's ultimately where our faith comes in. To keep praying that their guardian angel is always watching over them. It's been 7 months my daughter had her grand-mal. Her meds (Keppra) are working wonderfully but theres always 1% of me thats waiting in preparation for the next one. Keep the faith & take one day at a time, praying your son is doing better every day :)
Judy - posted on 04/20/2011
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Thanks for all of your responses! It helps to know I am not alone...
Heather - posted on 04/20/2011
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my son is 7, and has had seizures since 18 mths old. Grand Mal, and the first one was 3 hrs long. terrifying. That anxiety feeling you have eventually just becomes like a 6th sense. It's always there, just humming under your skin, even when you're sleeping. I find that a lot of "regular" parents don't have quite the same level- they can "shut off" at night, except for the kids calling for mom or dad, or the crying. They don't have to worry about every off noise, or the too quiet moments that give us massive anxiety. Jacob has absence seizures too, but they always resolve with intervention. You will eventually learn how to stay calm and asses the situation, and decide what measures to take. I promise, you will learn how to deal with this.
Donna - posted on 04/20/2011
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I totally understand what you are going through. My 12 yr. old son was dx in October 2010 with gerneralized epilepsy. I would call his name if he did not answer I would run looking for him and scream his name again. He finally said to me a couple of months later "Mom I am ok nothing is going to happen to me!" I had to explain to him how scared it makes me when he does not answer when I call him. It is very hard to give them back their freedom after watching your child have a seizure. My thoughts and prayers are with you!!
Kathie - posted on 04/20/2011
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I totally am feeling the same way as you, scared as to when the next one will happen. Praying for you!!
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