Things have continued to go awry with our new seizure monitor.
On Friday when I put Ben down for his nap I looked at his monitor and thought about turning it on. I had been leaving it off for naps since we had been having so many false alarms and besides, as far as we knew, he had never had a seizure during a nap.
So, I left it off and then put myself down for a nap/rest/quiet time.
When Ben woke up a couple of hours later I went and got him out of his crib and noticed that he was very postictal. He was limp and making the familiar jerking and repetitive movements common after one of his seizures. My heart broke. I pictured my little guy alone in his crib working through a seizure while I lay just a few yards away totally unaware. Since Ben's communication is still pretty limited we aren't sure how conscious he is during a tonic clonic. Could he tell I wasn't there with him? Did he wonder why I didn't come? How long did it last? Was he face down in his pillow like he often is during a seizure in bed? If I had turned the monitor on would it have worked this time? I had to stop picturing the scene and wondering about all the questions buzzing through my mind.
He was safe and I was so very grateful.
Fast forward to Sunday afternoon. We had put Ben down for his nap...this time the monitor was on. I went downstairs to make some phone calls for my calling and Andy went to our bedroom for a nap. According to Andy, a little while later, he heard Ben cry out. Andy went in to make sure it wasn't a seizure. Ben was just fine but Andy decided to stay in the room with him anyway and tried to make himself comfortable on the floor. Ben went right back to sleep. A while later, Andy, who was still awake, noticed Ben start seizing. Like I had done, he waited to see if the alarm would go off. No such luck. The seizure was only about a minute but I was so glad Andy had been in the room with him.
I think a call to the company is in order. Hopefully they can give us some suggestions as to how to make it work. If not, I guess there are other options out there. A fellow Dravet blogger mom mentioned to me that they just use a pulse oximeter and that has worked very well for them. Also, on Pinterest just a few days ago I saw this...
...a nice little app to monitor breathing through a pulse oximeter "sock". Pretty nifty!
I just wonder if Ben would keep that sock on.
Aimee-When we looked into this for C, the company actually told me that it would not work for him. He did not move enough to trigger the alarm. We have better luck with the video/audio system and no false alarms. So sorry that it did not work for you either. It is hard to get your hopes up and then realize that it didn't turn out the way you thought. We have tried the pulse ox throughout the night and found that he either kicked it off or took it off himself, causing more alarms. Truly, the best thing we have found is having someone sleep with him every night. Stinks, but it works. When we are awake and he is sleeping (naps, etc) we watch him via an app on our phone. Let me know if you want more info. Good luck! It is such a hard row to hoe. You both need sleep.
ReplyDeleteAimee, puzzle pieces are coming together. When he has seizures he is breathing? This is a stupid question right? This is why the longer they are the more dangerous? the pulse oximeter is bringing me back to NICU days, but it sounds like Niki is right, any kid agile enough would want to pull it off.
ReplyDeleteIt sounds like a video monitor would work great in this situation. Love you guys! Thanks for helping Jo-- not sure if he stayed at my house but I'm glad he was closer to sis for a while.
I have no words of wisdom. I will continue to pray for your family. Let me know if there is anything I can do.
ReplyDeleteI don't know how I missed this post. It never showed up on my blog list.
ReplyDeleteWhat a challenge to figure this all out. You just don't know what will work until you give it a go, do you?