Bowen Posted August 2, 2022 Report Share Posted August 2, 2022 This is super new to me since my son's issue only started a few months ago, but now that our first post COVID cruise in on the horizon, I thought I'd ask for some help. He has a condition known as Angioedema, which for him means his lips (one, both, or even just part of one) will randomly swell. There's no trigger that the doctor has been able to find, it's not an allergy, so there's no way to keep it from happening at the moment. It can look pretty scary when it does happen though, and he does need to take a steroid as soon as he feels it coming on. I'm a little concerned about someone getting nervous on the ship if they see my 12 year old walking around with a swollen lip, and I'm also a little (very mildly) concerned that we could go on a cruise and it could be the first time it goes beyond his lip into an airway or something. I've seen the allergy bracelets, but I was wondering if there is a reusable version of this that I could basically write down my room number, phone number, etc. just in case he's in the kid's club and it gets bad fast. What would be most helpful for a cruise staff to know in this situation? Maybe a lanyard with a card inside with this information on it? He is more than able to get back to the room and take his medication, so this is kind of me cycling through "worst case scenario" in my head. Thankfully he's the kid that most likes to hang out with me, so that's good, but I also don't want to lock him down with me the whole time since he really enjoys having that bit of freedom on board. Thanks! Quote Link to comment Share on other sites More sharing options...
Reigert2008 Posted August 2, 2022 Report Share Posted August 2, 2022 15 minutes ago, Bowen said: This is super new to me since my son's issue only started a few months ago, but now that our first post COVID cruise in on the horizon, I thought I'd ask for some help. He has a condition known as Angioedema, which for him means his lips (one, both, or even just part of one) will randomly swell. There's no trigger that the doctor has been able to find, it's not an allergy, so there's no way to keep it from happening at the moment. It can look pretty scary when it does happen though, and he does need to take a steroid as soon as he feels it coming on. I'm a little concerned about someone getting nervous on the ship if they see my 12 year old walking around with a swollen lip, and I'm also a little (very mildly) concerned that we could go on a cruise and it could be the first time it goes beyond his lip into an airway or something. I've seen the allergy bracelets, but I was wondering if there is a reusable version of this that I could basically write down my room number, phone number, etc. just in case he's in the kid's club and it gets bad fast. What would be most helpful for a cruise staff to know in this situation? Maybe a lanyard with a card inside with this information on it? He is more than able to get back to the room and take his medication, so this is kind of me cycling through "worst case scenario" in my head. Thankfully he's the kid that most likes to hang out with me, so that's good, but I also don't want to lock him down with me the whole time since he really enjoys having that bit of freedom on board. Thanks! I would work with your TA to note the reservation and I would also contact the Special Needs department (form below). I'd fill it out as best as possible and there is a box for "other items". They will contact you at some point, but you can also call them. Good luck.https://www.royalcaribbean.com/resources/guest-special-needs Sharla 1 Quote Link to comment Share on other sites More sharing options...
WAAAYTOOO Posted August 2, 2022 Report Share Posted August 2, 2022 10 minutes ago, Reigert2008 said: I would work with your TA to note the reservation and I would also contact the Special Needs department (form below). I'd fill it out as best as possible and there is a box for "other items". They will contact you at some point, but you can also call them. Good luck.https://www.royalcaribbean.com/resources/guest-special-needs I agree with you @Reigert2008. It seems like I've done nothing today but recommend special needs, but here we go again ! IMO, if you contact special needs ahead of time at least you know that your son's condition will be documented well in advance which could be a help to you if you feel like a flare-up could cause concern. Not sure if the steroids themselves would be an issue (doubtful) but as long as you document everything ahead of time you shouldn't have any issues. Fingers crossed that you don't have to worry about this at ALL ! Reigert2008 1 Quote Link to comment Share on other sites More sharing options...
smokeybandit Posted August 2, 2022 Report Share Posted August 2, 2022 Be sure to explain it well to the kid's club staff as well as the procedure that you want followed if it happens. Kid's club staff takes a very cautious approach to any uncommon medical issue (who can blame them) so you don't want them to overreact if it happens. Bowen 1 Quote Link to comment Share on other sites More sharing options...
ShugrGrl55 Posted August 2, 2022 Report Share Posted August 2, 2022 I can’t speak to the cruise staff question, but I do suffer from angioedema myself (stress is my trigger). So I wanted to mention that if you are truly concerned about it spreading to his airway (anaphylaxis), you should get him an Epinephrine Pen. As his steroid pills won’t be enough. His doctor can write him a prescription for one, so you have the proper dosage. Bowen and KristiZ 1 1 Quote Link to comment Share on other sites More sharing options...
Bowen Posted August 3, 2022 Author Report Share Posted August 3, 2022 5 hours ago, ShugrGrl55 said: I can’t speak to the cruise staff question, but I do suffer from angioedema myself (stress is my trigger). So I wanted to mention that if you are truly concerned about it spreading to his airway (anaphylaxis), you should get him an Epinephrine Pen. As his steroid pills won’t be enough. His doctor can write him a prescription for one, so you have the proper dosage. We have a half dozen all over the house and in my purse, etc. We'll definitely be taking a couple on the cruise so someone always has one, but I'm hoping I can talk to his doctor about maybe giving him the steroid in a preventative situation, like once in the morning or something. Is yours hereditary? None of this happened to him until he started to get into puberty range, but it seems to happen about every two weeks and it doesn't seem to be caused by anything at all. I'm just very glad it's the type that actually responds to steroids/epi pen. WAAAYTOOO 1 Quote Link to comment Share on other sites More sharing options...
ShugrGrl55 Posted August 3, 2022 Report Share Posted August 3, 2022 No one else in my family has it, on either side, besides me. And like your son, they couldn’t find any related allergies. It didn’t start for me until my mid-20s. And at first was only controlled by taking steroids every day (that certainly didn’t do my figure any favors lol). But luckily, it has been controlled for years now with daily antihistamines instead. I hope you find your answer with the kids club! And that you all enjoy your cruise, worry free! WAAAYTOOO and Bowen 1 1 Quote Link to comment Share on other sites More sharing options...
Bowen Posted August 3, 2022 Author Report Share Posted August 3, 2022 Thanks so much for your replies, you have really helped! Quote Link to comment Share on other sites More sharing options...
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