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Tips for traveling with spina bifida

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By Jennifer Allen

As with many disabilities, accessibility is just the tip of the iceberg when it comes to traveling with spina bifida. Here are my best tips for the other needs.

1. Catheters and restrooms

If accessible restrooms are what you need, you’re in luck. Apps like accessaloo focus solely on locating accessible restrooms. General bathroom finder apps also have the ability to filter by disabled access.

Somehow, we often find ourselves in areas that haven’t been covered by an app, yet. In situations like these, the most helpful thing I’ve found is to Google “accessible _______ (destination name)” and see if it’s already been covered by a disability travel blogger. While I may be one of the few bloggers focusing on disability travel with kids, there is a lot of great content on disability travel, and it usually includes restrooms!

If we’re in a city, my go-to is hotels. They’re centered on hospitality and have clean, accessible restrooms that are often rarely used. If you’ll be in a secluded outdoor location, look into closed system catheters. They’re pre-lubricated and include a bag to catch the urine. These can be great for when you can’t get to a bathroom right away. They go through insurance under the same code as any other catheter, so there’s no extra cost.

2. Enemas

This one is actually pretty easy! We pack all of our things and just take it on the road (make sure it’s as dry as possible to avoid mold in closed spaces).

When we’re camping, we bring our own camping toilet. That way, even if we’re in a nicer campground, my son can stay at our campsite while we do his enema.

3. Supplies

Most medical suppliers can easily change your shipping address, so you can travel long-term domestically and just ship your supplies where you need them – even if it’s a different place each month. This is trickier if you’re traveling overseas. You can have them shipped to someone at home who can then mail them to you, but that takes either a lot of shipping time, or a lot of money, or both. It’s easier if you travel for less than a month, and plan to leave just after a shipment has arrived. This is a sacrifice for some, but a month overseas is surely better than not going at all!

4. Medications

This is another one that’s easy for domestic travel. We tell the pharmacy where we’ll be, and pick up in another chain location.

Managing medication refills while traveling abroad varies by prescription. We sometimes refill the script early if we’re able to. Some, if it hasn’t been the full month, we have to pay out of pocket. This is another instance where it’s helpful to either have someone mail you your medications, or to travel around your refill schedule.

5. TSA

Don’t worry about anything. If it’s medically required, it’s allowed. If your child is in diapers, or requires extra medical equipment, you get an extra bag for that. Even if your plane ticket didn’t include a carry on, you’re allowed a medical bag. Anything necessary for the flight and/or layover is allowed in that bag. If you’re worried, you can call the TSA in advance at 855-787-2227. We’ve done an enema in the airport, and we were able to get our dish soap through security (after a lot of questions). You’ll need a little extra time going through security because your liquids will have to be scanned. You’re the one who determines what liquids are necessary.

6. Flying with a shunt

First, know that there are no added inherent risks in flying or traveling with a shunt. While air pressure and such may cause discomfort, there is no heightened risk. Second, know that you’re not alone. Moms have taken their hydro kids all over the world, and have great things to say about it!

My son doesn’t have a shunt, so I don’t have any first-hand experience with this. I do have content from another mom with better expertise. This article covers risks to be prepared for, and includes information on finding neurosurgeons around the world.

7. Electrical spinal stimulation and other routines

Some routines have to be done before you can begin exploring each day. Just remember that a shorter travel day is still a beautiful travel day. In fact, with young kids, this may be a good way to keep us from pushing them too hard, anyway.

Long drives or flights are a great time for getting spinal stimulation done without braces. We have a fanny pack and take the tens unit on the go for rounds that he can do with his orthotics on. There’s a variety of medical routines that fall into this same category. If you can take it on the go, great. If not, set some time aside in your travel day to get it in. Losing an hour is not giving up the day.

8. Managing therapies

Your physical therapist can give you exercises to do on the go that are often more productive than time spent practicing in the hospital. We typically rotate between PT and OT, with 12 week sessions of each. Sometimes we plan for a week in between – which makes a great time to get away without missing anything.

Similar to education, life is learning – you don’t miss as much from traveling as you might think. In fact, it’s often better. We typically get more exercise when we’re traveling, because we spend the full day exploring, instead of being in the confines of our house.

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