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New Here and questions....
Fri, 09/01/2006 - 11:12Topic: Parents & Caregivers
Hi All, My 14 year old son was dx'd three years ago with Complex Partial Seizures and has been taking Trileptal (suspension form) quite successfully. His epilepsy is another 'symptom' of a few other neurological issues - basically his little brain didn't quite come together perfectly resulting in speech and fine motor challenges and some mild learning disabilities.
Anyway, my son has breakthrough seizures when he has grown a lot - which given his age, is happening quite rapidly! About every 6 months we go through a period of seizures until we can get him 'juiced up' to the right level. We are now increasing his dose and he will now be taking 900mgs twice daily.
My question - a 'new' feature of his seizures is some brief apnea - lasting no more that about 15 seconds. He appears a little gray and then a little 'blue' around the mouth. IT passes quickly and the neuro nurse has told us if that goes on longer than 2-3 minutes to call 911.
Does anyone else exprience this with their child? This makes me nervous and I am now in the process of educating the school staff etc. How worried should we be that he will not 'come back' to us?
Thanks all and glad to be here!
Comments
Re: Re: New Here and questions....
Submitted by My3Kids on Thu, 2006-09-07 - 14:44
Essie, Thanks for the reply and the welcome! I'm curious, do they know why your daughter has apnea? My son experiences it sometimes during a seizure but never outside of that. Was she a preemie? I'm sorry if I'm being intrusive, I was just curious.
Take care.
Re: Re: Re: New Here and questions....
Submitted by Essie on Fri, 2006-09-08 - 06:50
No, you're not intrusive, I don't mind talking about it! Yes, my daughter was born on 37 weeks, and her lungs wasn't developed enough and had water in them. So she spent 8 days in Neonatal. First they thought that must have been the reason for her sudden infant death syndrome, but when she was 2 and a half, me and my son was diagnosed with gastric reflux (the stomach contents rises up into the throat).
So we asked and they tested my daughter. Her ph (acid count) was extremely high, so they said it is most probably what her problem is. She literally suffocate during her sleep from the stomach content that rises into the throat. They can't say for sure, but it's their best guess. So we're all on chronic medication for that. Since then she had less episodes, only 3 again in 18 months now!
Take care,
Essie
Re: New Here and questions....
Submitted by Essie on Tue, 2006-09-05 - 14:12
Hi there I'm relatively new too, only been on the site for 2 weeks. My son is five, and has been diagnosed with JME for a month. He's been put on lamictal. Unfortunately I cannot help you, because he doesn't experience that, but I wanted to welcome you. My daughter, who turned 3 yesterday, had episodes of apnea since 2 months of age. Fortunately she slept on an apnea monitor that we bought for my son when I was pregnant and it was on special. She had triggered the monitor so many times (after 20 seconds of no breathing). She also used to appear gray in the face, sometimes blue, and sometimes blue around the mouth. Even her hands and legs turned blue, sometimes when she was awake! So I do understand your fear and frustration. Our pediatrician said we need to study up on our CPR, watch the video we had on it a thousand times and pray. Usually she took a breath if I picked her up, so it was fortunately never necessary to perform CPR on her. Good luck, and take care Essie (mom to Nian, 5, and Meonie, 3)