We made it 16 months without a hospital visit since Hannah was born.
Hannah had these hyperventilation episodes when she gets upset or frustrated. It doesn’t happen often, although it seems to be happening a bit more now (mostly when we are driving long distances and she gets antsy or when she starts throwing a tantrum). There were also about 3 episodes where she would start choking on a piece of food (cheerios, goldfish, or vienna sausage), and she would have what seems like a panic attack and stop breathing for about 30 seconds or so even though the food has been dislodged. During both the hyperventilation episodes as well as the panic attack episodes, we would just hold her and cuddle her, and she would calm down.
This afternoon, she started choking on a cheerio while sitting in her high chair (I think). She started panicking, and she went into another one of her episodes where she starts freaking out and stops breathing and acts as if she is choking. I wasn’t able to calm her down this time, and a few minutes into it, she started turning blue around the mouth, so we called 911.
It was just me with Abigail and Ethan. Ethan was freaking out a bit, and Abby just sat there eating her chips almost trying to tune it out. I felt so horrible for them, even though I was trying to act very calm. By the time the paramedics and firemen came (a big truck and an ambulance) and it was decided to take Hannah to the ER, I sent the kids over to my neighbor’s house. Looking back, I probably didn’t handle that the right way, but I was really scared at that point.
In the ambulance, her O2 sats were down a bit (I believe between 92 and 95), and she was still acting panicky and trying to catch her breath but also very upset. The paramedics suggested we take her to the ER with lights and siren to get her checked out. By the time we got to the hospital, she was calmed down, 02 sats were better, but she was a bit lethargic for about 5 minutes. She calmed down completely while they gave her a breathing treatment (may or may not have helped) and came back to complete normal a few minutes after that. Then she fell asleep for almost 3 hours there. Chest Xray was clear.
The paramedic who was in the ambulance with her said it was almost like she was having a seizure, but she wasn’t.
Long story short, the ER pediatrician believes she has breath-holding spells with seizure-like activity based on her history and today’s event. She also believes that because she has the weakened vocal cords and laryngomalacia, it may or may not have exacerbated this. After reading this Webmd article, this sounds exactly like what we have been seeing for the past few months.
The ER pediatrician put her on an oral steroid for three days because she was concerned about inflammation “just in case.” Also, she believes Hannah may have croup, but she is not sure.
She is back to being completely normal acting now, back to her happy self with normal breathing.
I have absolutely no idea whether or not this is related to her Gaucher’s disease or perhaps it is just exacerbated by it. Or maybe it isn’t even related at all to it, and it is just another something we have to deal with.
Regardless, because of the severity of what these spells can bring, we have had to prepare ourselves for more 911 calls and ambulance rides to the ER because of it. We also warned Ethan and Abigail that she has this condition, and it may happen again. We need to work on an actual plan in case something like this happens again.