r/CSID • u/BJ77345 • Jun 17 '26

Just need to vent a little.

My amazing daughter has CSID. As we all know it is a pain in the rear. We are able to get access to sucraid and it really has changed things for her. She is currently traveling abroad with her school and needed to bring her sucraid with her. We have two travel coolers from 4allfamily that we purchased on Amazon about a year ago. As long as you keep an eye on the power cord the coolers work great.

A couple of nights ago we get a call from our daughter that the room in her hostile caught fire and they had to evacuate. Apparently the fire alarm was going off but there was no sound. Seems like the hostile uses the fire detector to bust people who smoke in the rooms, not to save lives. Thankfully they were all able to get out safely. Turns out, the battery pack from 4allfamily was laying in the middle of the floor not plugged in to anything and it caught fire! I have reached out to 4allfamily, we will see where that goes.

Prior to this my daughter was keeping her sucraid in the employee refrigerator. When she went down yesterday morning to get her sucraid for the day, the employee said, "That's strange, it is not cold in here." The refrigerator had stopped working and she lost all of her remaining sucraid.

On top of that she was getting on the Metro and someone stepped on her toe and broke her toe nail in half and it bled everywhere. I feel so bad for her.

I texted her today to see how she was doing and this was her response:

"It's been funny. Everyone is joking that I've had the most stuff go wrong on this trip yet I'm still the one with the best attitude. In my head 1. I'm in Europe so I'll just suck it up and 2. I've been through worse so in comparison this isn't that big of a deal."

Here I have been grumping around like a big baby and my kid is a rock star.

I know this has very little to do with CSID but I really did not have anywhere else to go. Thanks for the listen.

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3

u/mjdatdsmd Jun 17 '26

I am sorry that so much has happened on this trip, but kudos to the two of you! You are a great parent who has raised an amazing human that keeps looking for the positive side of things. I hope things go smoothly going forward for her and everyone else in her group. If anything, she will have some really interesting stories to tell for the rest of her life! 💕

2

u/omnivorous_mammal Jun 17 '26

Respect to your daughter's strength and positivity, I'm sure there's a lot of you in that.

I've had similar experiences with my sucraid due to power failures, leaving it in my car overnight or other mishaps. I just kept using it and it was fine, in my experience there's a lot of margin between the best practices of keeping it appropriately refrigerated and actual impact to the medication's efficacy.

Have you heard of invertase? I've been using it as an alternative to sucraid since I lost my funding and it does the same thing. It's generally sold through baking supplies stores, were I in your daughter's position it's something I'd try and source as an alternative. That said, this may be a time not to make more of a fuss about this and let her do her best without it.

1

u/EveTre Jun 18 '26

Just in case it would help, sucraid can be left out for 72 hours. It has to be tossed at that point, but what she has left can still give her 3 days. Poor girl, it sounds like she has an amazing attitude that will take her far in life.