Laryngomalacia and EEG appointment
- ebilfeld
- Dec 30, 2020
- 3 min read
So if you follow me on Instagram, @elizabilfeld, you might have seen a recent post or story about Mirabella who has been making a loud noise along with a motion like spasm. For awhile I thought that it was her way of being excited. But I saw a video a mom posted on one of my mommy groups of her son doing this motion. After seeing the video it looked a lot like what Mirabella was doing. So we made an appointment with her pediatrician to get her thoughts and we’re referred to an ENT and neurologist. Which we have been to both before. Our ENT appointment was on the 17th and her neurologist wanted her to get an EEG done whichwas the12/22. Her ENT appointment went okay. With all I described to the doctor she suspected that Mirabella had a condition called Laryngomalacia. In order to determine that is what was going on, we needed to do a scoop. Which was a tiny little wire like camera that travels up her nose, down her throat to her voice box. Baby girl did such a good job with this. Oh course she screamed and cried but overall she did really well. In the end she was diagnosed with laryngomalacia. Which is where the Voice box is swollen, and much smaller. Along with a flap on the tip of the voice box that can sometimes flop down and close cause less air to come through. Which in turn causes the noise she is making. The doctor determined Miras to be moderate since it has caused her to have some reflux. So she placed her on a reflux medication for 3 months, recheck in a month and see what that does. As of right now she has not mentioned surgery. Hoping it will fix itself. Here is an illustration on what it looks like. I actually got to see the video from the scope and Mirabellas looks just like this.
So we have been giving her the medicine for about a week now and that's where we are at with that!
As far as her EEG goes, it was traumatic to say the least. First off, it was at a different location then what we were used too, so just parking was dramatic. So already flustered we have to get a health check, then we have to check in then we have to find the EEG department. Finally after 30-40 minutes we get settled in the room and start getting the wires hooked to her. Keep in mind, Mira wasn't allowed to sleep. She had to stay up late the night before, and only a short nap that day. The ride there I had to sit in the back and literally shake her awake as she was falling asleep. So she is already fussy from being tired and it's right about to be feeding time for her again. Well she does alright as he is starting to put the wires on but slowly she starts loosing her cool and is completely having a melt down halfway through. Poor girl just wanted me to cuddle her so as he is finished I go to pick her up and put her on my shoulder to comfort her and calm her down. The tech tells me no and to keep her laying down and to get her to go to sleep. Not having a bottle and she doesn't do pacifiers so I start to nurse her. She falls asleep and he says we have 10 minutes left in the reading. All and all it was not fun. She ended up not sleeping on the way home and just it was a nightmare. Not to mention I feel like she should have been awake for the study and possible do the motion I am concerned about. Either way I wait until after christmas to hear the results. It comes Tuesday, yesterday, and I still hadn't heard from them. I give them a call and leave a message. A nurse called me back and said her EEG was normal, everything looks great! any questions? I'm like, yeah then why does she make that motion then? She asked whether or not she made the motion during the study, I told her the tech insisted on her being asleep. All she said was she will let the doctor know and give me a call back as to what to do next. I haven't heard anything yet. I am guessing they will want another EEG with her awake this time. Which insurance will probably deny. So needless to say, I'm a bit frustrated with childrens right now.
Here are some pictures from our visits!
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