TPN, IV meds, and Disneyland

[disfan07]

I am going to DL for 2 nights in May and it is the first time I will be going with TPN. We went to Disneyworld in 2015 with IV meds, but no TPN during the day.

For anyone who has gone with a central line and IV fluids/TPN, IV pump, etc, did you have any issues at security checks? I will also have other meds with me like IV Benadryl, IV Zofran as well as extra supplies (syringes, saline, heparin, etc). I have been through airport security multiple times with no issues but I am still a little nervous about taking all of this into the parks.

Also, in WDW, I left my Benadryl and supplies at first aid because it was so hot when we were there. I would go to first aid every 3-4 hours to do my Benadryl. It honestly didn't really interfere with our touring plans and it was a nice break from the heat. Can I do the same thing at First Aid in DL and DCA? Since I will have to disconnect my TPN to push meds, I am a lot more comfortable doing that indoors in a more sterile place than outside wherever we are. Will they let me store my meds and supplies in there for the day?

Any other general advice about Disneyland on TPN?

 

[gap2368]

As fair as I know you can keep medical at first aid ( I have never been, but the nurse at MK first aid told me you could)

I go with a good amount of medical supplies too ( not as much as it sound you go with) I have never had a problem with security.

You might want to back al your medical things in one bag and let the security officer know it is all medical thing.

You should be fine to discoed reconnect and give medicine in the first aid room ( and yes I too feel better doing it at first aid when I have too, cleaner, quiet and cooler)

I do not have any advice on TPN I do know one person on it but I think this is one of the few people I know that has not been to disney ( I think they are more of a universal person)

 

[disfan07]

As fair as I know you can keep medical at first aid ( I have never been, but the nurse at MK first aid told me you could)

I go with a good amount of medical supplies too ( not as much as it sound you go with) I have never had a problem with security.

You might want to back al your medical things in one bag and let the security officer know it is all medical thing.

You should be fine to discoed reconnect and give medicine in the first aid room ( and yes I too feel better doing it at first aid when I have too, cleaner, quiet and cooler)

I do not have any advice on TPN I do know one person on it but I think this is one of the few people I know that has not been to disney ( I think they are more of a universal person)

Thanks. If I can keep my meds and stuff at first aid that will help so much. Since I have osteonecrosis in my shoulders, I am not supposed to be carrying a lot of weight so since I will have a back pack with 1liter of TPN, the pump, epi pens, inhaler, snacks, glucose meters, etc that I need with me at all times, adding my IV meds and supplies to all of that will be too much for me to carry.

 

[gap2368]

Thanks. If I can keep my meds and stuff at first aid that will help so much. Since I have osteonecrosis in my shoulders, I am not supposed to be carrying a lot of weight so since I will have a back pack with 1liter of TPN, the pump, epi pens, inhaler, snacks, glucose meters, etc that I need with me at all times, adding my IV meds and supplies to all of that will be too much for me to carry.

I have some problem with my back (a curved spin and something else, plus my hips are out of line due to one lag being less then a half inch longer) and can not carry anything heavy ( it also affect my breathing to the point I turn blue ) and I use a back pack with a wast strap and a hard frame this keep if off my back and I love it ( I will try to find a link for you.)

I have one of the free bag that the Epipen websitee was going away I really like it I clip it too my belt loop. I keep one epi pin and my glosecose tablet in it this way if I am ever with out my back pack ( like on soaring) I always have some with me

 

[disfan07]

I have some problem with my back (a curved spin and something else, plus my hips are out of line due to one lag being less then a half inch longer) and can not carry anything heavy ( it also affect my breathing to the point I turn blue ) and I use a back pack with a wast strap and a hard frame this keep if off my back and I love it ( I will try to find a link for you.)

I have one of the free bag that the Epipen websitee was going away I really like it I clip it too my belt loop. I keep one epi pin and my glosecose tablet in it this way if I am ever with out my back pack ( like on soaring) I always have some with me

I have been using the camelback back packs (it was the best option we could find on short notice) and even with the waist and chest strap, it still puts a lot of pressure on my shoulders. But if you can find a link for the backpack you use, that would be great. I have been trying to find a different backpack to use with no luck.

I keep my epi pens in my wallet and in my backpack. I always have 2 in my wallet and at least another 2 in my back pack. For this trip, my parents will each be carrying 2 and so will my friend (when I have reactions I can go through multiple epi pens before paramedics arrive). They never leave my sight.

And you just reminded me of another question. Since my backpack will have my TPN, will I not be allowed to go onto rides that don't allow backpacks (like Soarin)? Or will that not be an issue?

 

[gap2368]

soaring might be a problem ( can you disconnect just for the ride ) as I think all back must me kept under the set or on the floor ( I know the back pack I use dose not fit at all)

I can not find my bag on line it is a Magellan I got it from academy sports fro about $35-40 it came with a hydration bladder but I took it out, and the wast straps have some pockets in them, the Back of it is hard plastic and it dos a very good job of keeping if off my shoulders and back if I have the wast strap tight enough

I am very luck that I have not needed to sue my Epipens since the time I was rushed to the ER the first time we are still not 100% sure what caused it) but my DR has had one of his patent die at disney due to an annaphlsitc shock so he inset on me keeping one with me at all times ( disney started to carry them after this but it would not do much help depending on how quick an one came on.)

 

[Bianca and Bernard]

So, with the TPN, you don't need to eat at all, correct?

Anyway, my niece's friend (when they were 5 or 6) had to do TPN temporarily when she had some sort of bowel issue. It was a long procedure...like 12 or 14 hours, and she had to do it in the medical center. I think she had to do it in center because of being so young?

Can you do it overnight, at the hotel? I'd be worried about doing it while at the park. Not only do you have to worry about the rides jostling or crushing the equipment, but people running into it, the heat making you sick, the sterility.

 

[Snap Crackle Pop]

I am going to DL for 2 nights in May and it is the first time I will be going with TPN. We went to Disneyworld in 2015 with IV meds, but no TPN during the day.

For anyone who has gone with a central line and IV fluids/TPN, IV pump, etc, did you have any issues at security checks? I will also have other meds with me like IV Benadryl, IV Zofran as well as extra supplies (syringes, saline, heparin, etc). I have been through airport security multiple times with no issues but I am still a little nervous about taking all of this into the parks.

Also, in WDW, I left my Benadryl and supplies at first aid because it was so hot when we were there. I would go to first aid every 3-4 hours to do my Benadryl. It honestly didn't really interfere with our touring plans and it was a nice break from the heat. Can I do the same thing at First Aid in DL and DCA? Since I will have to disconnect my TPN to push meds, I am a lot more comfortable doing that indoors in a more sterile place than outside wherever we are. Will they let me store my meds and supplies in there for the day?

Any other general advice about Disneyland on TPN?

You do sure quite have a lot of diagnosis's and medicine.
If you can store it at WDW you most likely can store it at DL.

 

[disfan07]

soaring might be a problem ( can you disconnect just for the ride ) as I think all back must me kept under the set or on the floor ( I know the back pack I use dose not fit at all)

I can not find my bag on line it is a Magellan I got it from academy sports fro about $35-40 it came with a hydration bladder but I took it out, and the wast straps have some pockets in them, the Back of it is hard plastic and it dos a very good job of keeping if off my shoulders and back if I have the wast strap tight enough

I am very luck that I have not needed to sue my Epipens since the time I was rushed to the ER the first time we are still not 100% sure what caused it) but my DR has had one of his patent die at disney due to an annaphlsitc shock so he inset on me keeping one with me at all times ( disney started to carry them after this but it would not do much help depending on how quick an one came on.)

Thanks for all of the advice!
Yeah I was afraid of that with Soarin. I can't disconnect just for the ride because my sugar will crash because my TPN is 15% dextrose so a sudden stop with cause severe hypoglycemia. No big deal....I have gone on it before and I heard the new show is not as good so if I cant go, I cant go. it is what it is. If my dad and my friend want to do it, I am more than happy to wait for them. I am just so thrilled that we are going back. We are taking my best friend of 25 years who has only spent 1/2 days at DL before so I am just excited that we get to take her for more than 1/2 day this time.

 

[disfan07]

So, with the TPN, you don't need to eat at all, correct?

Anyway, my niece's friend (when they were 5 or 6) had to do TPN temporarily when she had some sort of bowel issue. It was a long procedure...like 12 or 14 hours, and she had to do it in the medical center. I think she had to do it in center because of being so young?

Can you do it overnight, at the hotel? I'd be worried about doingit while at the park. Not only do you have to worry about the rides jostling or crushing the equipment, but people running into it, the heat making you sick, the sterility.

Anyone is capable of doing TPN at home (infant to 99+). But usually if it is used temporarily while the underlying illness is being treated, they don't discharge until the illness is undercontrol or fixed and can come off the TPN safely. It is used a lot in hospitals as temporary nutrition for bowel issues.

I actually do eat as well...i just cant get the calories and nutrients I need from food because of absorption issues and allergies. I've been on it for a little over 3 1/2 years at this point. I can technically run it whenever I want (its 12 hours) but my team wants me to run it while in the park because it will help keep my sugars stable while in the park (I have hyperinsulinemia) and it will give me more energy in general.

Right now I run it 12 hours and it gives me all the protein and micronutrients I need (except iron) but only about 900 calories. The other 900 calories in need, in theory, come from food. But we might double my TPN and just run it continuously for the 2 days in Disneyland.

I thought about the rides as well, but I wont be doing any thrill rides (no matterhorn, space mountain, splash mountain, California screamin, rapids ride, etc) for medical reasons. As far as sterility, I would be hooking it up in our hotel before we leave. If I have the correct needles, I should not have to disconnect it at all to do meds because I will have 2 access sites which eliminates a lot of issues. But that's why I typically go to first aid to do any of my IV meds. I prefer not to do them anywhere else in the park unless it is an emergency. But to be honest, my doctor who orders my TPN has said that once you have flown while running TPN, almost everywhere else seems like a more sterile place to do it...lol

But thanks for responding. Definitely di help to reinforce the things I need to make sure I am careful about with it (the rides, other guests bumping into it, etc) especially since, as you know, a lot of times we tend to be more oblivious to things when walking down mainstreet...lol

 

[disfan07]

You do sure quite have a lot of diagnosis's and medicine.
If you can store it at WDW you most likely can store it at DL.

And my only reply to this would be yes. Multiple diagnoses, with an amazing medical team, and a treatment/med regimen that has greatly improved my quality of life and is allowing me to go to grad school this year.

And I just wanted to hear from people who have stored stuff in DL because yes, logically it should be the same both places, I have experienced minor differences between the 2 places that you would not expect to be different. And I just wanted to hear experiences so that we don't waste time when there trying to figure it out.

 

[tmullen93]

Yes. I just opened up my infusion backpack for security, some didn't even ask once they saw it was infusing into my port. We used first aid at disneyland when we needed to do some IV meds and they were super helpful!! They offered us a private room and for me to come back and lie down at anytime.