Hello all,

 

I mostly lurk on this group discussion but periodically jump on to chat.

 

My son has severe CP and mental retardation.  He also has breathing difficulties a g-tube and seizures.  About 80% of his seizures happen while he is asleep (we track them). The electrical activity associated with changes in sleep patterns, seen via eeg,  are linked to his seizure activity. 

 

We seriously explored a seizure monitor for his bed (that is set off when he has sustained movement) however our doc (who I trust quite a bit) noted that they tend to have a very high alarm rate (even when there is no seizure) and parents end up being awakened repeatedly for no reason.  As he pointed out we tend to wake up on our own via a classic baby monitor so we might as well stick with that. We do maintain two baby monitors set to different channels (and one is portable as well) so that we can monitor my son pretty much everywhere in the house.  As well, one monitor is linked to a black and white camera with a small tv in our kitchen so I can watch him during a nap. Our son tends to develop very laboured breathing during seizures and I tend to be able to hear it.  When I am sound asleep the sound wakes me up.

 

The risk of serious seizure activity at night is that if it is a long seizure the ability to choke on vomit or on saliva (if they have poor control of their mouths like my son choking on saliva is possible) increases pretty significantly.  As a result the length of the seizure vs. how scary the seizures looks tends to be more of a concern. Our son's seizures are considered to be life threatening and our doc has had the "it is possible to come down one morning and find he has expired through the night" chat with us.  So as a result I do (and would) suggest that nighttime seizure activity is something that should be taken very seriously. 

 

My son is on valproic acid with a prn order for diazepem for longer siezures.  We also have criteria where we call 911 if things don't settle down.  Knock wood...we haven't had to do that yet.

 

I hope things settle down.  My understanding is that seizure control with meds should be the first priority of the day (if a child has regular seizures). I wonder if they are trying to establish whether Moriah's seizure was a one time thing or will be an ongoing thing.  Certainly kids with CP also tend to have seizure disorder at a fairly high rate.

 

Good luck

Laura MacGregor

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