It's been 3 years, a few questions about my son with medical needs

[moodme]

Hello,
It has been 3 years since we have gone to Disney or even flown anywhere with our family. Our 5 year old DS has heart problems and is tube fed. So starting at the beginning of our trip with the airport:
Medications have to be in a seperate zip lock bag at security, how many should I put in per bag?
What about tube feeding supplies at the airport, I am more concerned about the formula. How many cans can I bring through check in? Do I need a drs notice for these? I was hoping to bring about 8 cans through that way if the checked bags are lost, we have 2 days worth until the medical supply company could get us more.
My son also tires easily and has trouble keeping up. So I was definetly going to have him in a stroller and use a GAC for some of the rides. But we were looking at renting a stroller. We figured it would be easier for one of us to carry him instead of one carrying him and one carrying the stroller on the buses. Can you get a GAC with the Disney strollers?
Any other advise is appreciated!

 

[ttintagel]

The only question I have experience with is the bag of medications. I have to take a lot with me, and I put enough in each bag so that if it's laid flat, it's all in one layer so the inspector can see everything in the bag without opening it if he needs to.

 

[Michigan]

Have been in the wheelchair parade viewing area several times where people had Disney rented strollers tagged with stroller as wheelchair tags.

 

[disney david]

I am going to give some very helpful sites and a phone number you can call and ask TSA as many questions as you want.

Here TSA cares

http://www.tsa.gov/travelers/airtravel/disabilityandmedicalneeds/index.shtm


Here about medications through check point

http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1374.shtm#4


Here some general tips

http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1567.shtm


http://www.tsa.gov/travelers/airtravel/specialneeds/before_you_go.shtm


http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1572.shtm


Sorry for so many links but figured they might help

 

[buffettgirl]

yeah, you'll definitely want "stroller as a wheel chair'. You'll be able to just keep him in his stroller through the whole line queue.

I would think about renting off site or bringing from home. The walk to the bus, the wait for the bus, the walk to the hotel is often one of the most tiring things for kids. They just seem to quit. When my kids were little we had great luck with a maclaren umbrella stroller. It was very light weight and folded very easily (and had a shoulder carry strap) so it was a piece of cake to get on the bus.

 

[kellyw8863]

We had a tougher time with the TSA in our little rinky dink airport than with Orlando. Our daughter had lots of liquid meds, syringes, sterile water, cold packs, plus a couple of cans of formula and Pedialyte (our HHC actually shipped the rest of our week's supply directly to Disney). I wouldn't worry about how it is bagged because we had to take everything out anyhow so it could be swabbed. One thing I did learn was to unseal new OTC meds. We also pre-boarded (Southwest) which guaranteed that all of her medical stuff was actually stored in the bin above where we were sitting. And, if you make sure your carry-on contains nothing but medical supplies, it won't count towards your allowance. Same with checked baggage - you won't be charged as long as it is only medical supplies - including medical foods like formula.

 

[lanejudy]

yeah, you'll definitely want "stroller as a wheel chair'. You'll be able to just keep him in his stroller through the whole line queue.

I would think about renting off site or bringing from home. The walk to the bus, the wait for the bus, the walk to the hotel is often one of the most tiring things for kids. They just seem to quit. When my kids were little we had great luck with a maclaren umbrella stroller. It was very light weight and folded very easily (and had a shoulder carry strap) so it was a piece of cake to get on the bus.

I agree! The worst part is trying to get from the park to the bus and then back to your hotel room for the evening with an exhausted kid; much more tiresome than you'd think for carrying someone. An umbrella stroller works great and doesn't get in the way on the bus. If he's a little big for a regular umbrella stroller, look into renting a Maclaren Major - I think CareMedical rents them in Orlando. Or check the sticky note above for rental companies.

 

[Mousequake]

What about tube feeding supplies at the airport, I am more concerned about the formula. How many cans can I bring through check in? Do I need a drs notice for these? I was hoping to bring about 8 cans through that way if the checked bags are lost, we have 2 days worth until the medical supply company could get us more.

My DD4 is also tube-fed, so I know exactly what you're going through. I can tell you what the TSA regulations are SUPPOSED to be, and then I can tell you what my actual experiences with them have been. The regulations clearly state that medically-necessary liquid nutrition is exempt from the normal limitations on liquids, and that you are allowed an unlimited amount. You must put the liquids in a bin by themselves and declare them for additional screening.

My real-life experience, though, is much different. We refuse to check our formula, since, just like yours, it has to come from a medical supply company. If it were lost, she literally could not eat for the duration of our trip. The last time we flew, the agents at our local airport (PDX) insisted on patting us down (including the 4-year-old) and swabbing everything in our bags because they felt we were bringing too much, despite their regulations clearly saying we are allowed an unlimited amount. When I pointed out that the regulations say 'unlimited,' the agent I was dealing with said, "yeah, but I'm not going to just let you bring as much as you want." Clearly he has a different definition of 'unlimited' than I do.

At other airports, though, our experience has been much different. Some just look at the formula, look at the child, and wave us through. After our last experience, I've been given contact info at TSACares who are supposed to facilitate any future security screenings for us and have someone on hand who has already been briefed on the situation and will walk us through security. You may want to give them a call before your trip to inquire if this is possible for you.

The best advice I could give is to go armed with the knowledge of what the TSA regulations are, but be prepared for the worst and allow LOTS of extra time to get through security.