Arthritis at Universal

[Madteaparty001]

I'm feeling anxious and need help planning and figuring out what to expect for our upcoming trip.

So after several months of pain and what feels like going through every test and specialist possible, DD10 was just diagnosed with Juvenile Idiopathic Arthritis. Even worse it's concentrated in her spine, particularly her neck. Her treatment will be aggressive and the rheumatologist has gotten her started on steroids to help give her some immediate relief. We have a short vacation booked to go to Universal this month (3 park to park days) and will be staying onsite with Express Pass. We booked this back in the spring with expiring travel credits and money that is tied up in non-refundable things like park tickets so canceling doesn't really make sense as we wouldn't really recoup much. We already have a wheelchair for her as she also has hypotonia and tires easily so getting around and having a personal bubble from people shouldn't be a problem.

My question is whether there is anything she can safely ride? Almost every ride seems to have a warning against those with neck injuries and her doctor and I went over rides she absolutely can not ride (rollercoasters such as RRR, Hulk, and Mummy, anything that will whip her around quickly). Will getting the disability card even be worth it since we already have express pass? Does the Harry Potter Forbidden Journey ride hold your head in place?

She likes Harry Potter so we expect to get her a wand rather quickly but I worry she'll be bored and depressed being so limited in what she can do. I'm hoping all of the Christmas activities (shows, parade, etc..) will be enough to make it feel she isn't missing out too much. Is there anything at Universal that you could recommend to fill time in the parks or on property that would be safe and enjoyable for her age?

 

[Narcoossee11]

The great/ uniqueness of Universal is the thrill rides. Unlike WDW, most rides are for thrill seekers.
I think most the rides are going to be out. She should enjoy the theming of Harry Potter and Grinch parade.

Do what you can.

 

[SueM in MN]

Sorry to hear about your daughter. Unfortunately, Universal is mostly thrill rides, so she won’t be able to do many rides. Universal has a very helpful Riders’ Guide at this link.
It has very complete details about each attraction. Unfortunately, even many thst might be thought of as children’s ride - like those in Seuss Landing - have neck and back warnings.

Does the Harry Potter Forbidden Journey ride hold your head in place?

No.
The ride car has a high back, which looks supportive. But, the ride itself is very turbulent and at times your ride car is tilted forward so your whole weight is resting against the restraint.
She won’t be able to ride, but non-riding guests can still do a walk thru of the castle, which is pretty cool. She can take her time looking at everything and finding things from the books and movies. The hall of portraits is especially cool - they have a lot to say!
Just ask one of the attendants at the entrance of the attraction about doing the walk thru. I don’t know if the Gringotts Bank ride has a similar walk thru available, but you should be able to talk to an attendant or go in the queue, then chicken out before riding. The inside of the bank is really well done.
With park to park tickets, you will be able ride the Hogwarts Express (guests with one park tickets cant ride). The train is wheelchair accessible and is a smooth ride. It is different in each direction, so be sure to ride each way.
Both Hogsmeade and the Diagon Alley/Knockturn Alley areas have a lot of interesting details. Look for interactive things like owls and the Monster Book of Monsters.
There are quite a few places to practice spells with the interactive wands in all Harry Potter areas; she will get a map with her wand.
I don’t know if she’s interested in photography, but they are good places to take pictures.

Hope you all have fun. It won’t be the trip you were thinking you would have, but still very fun

 

[DaviVascaino]

Rheumatologist here.

I am more concerned with her hypotonia than her Juvenile Idiopathic Arthritis. Hypotonia would put her at risk of whiplash injuries during more intense rides such as rollercoasters, which could lead to injuries to her spine, tendons and even arteries.

I would be very careful with any rides that can lead to more intense body movements.

 

[Madteaparty001]

Rheumatologist here.

I am more concerned with her hypotonia than her Juvenile Idiopathic Arthritis. Hypotonia would put her at risk of whiplash injuries during more intense rides such as rollercoasters, which could lead to injuries to her spine, tendons and even arteries.

I would be very careful with any rides that can lead to more intense body movements.

She's been in OT and PT for years, most of her weakness is in her hips and glutes (for example she can not perform a squat without assistance and was noted as haivng significant gower's sign at her first appointment). In the spring we did 2 weeks at WDW where she road almost every ride multiple times, her favorites being space mountain and the tea cups. The pain in her neck did not start until several months later. The wheelchair is because she fatigues very easily, any more than 5-6k steps a day and you can see her physically start to wilt.

 

[DisArmyWife215]

Deleted

 

[HopperFan]

I'm feeling anxious and need help planning and figuring out what to expect for our upcoming trip.

So after several months of pain and what feels like going through every test and specialist possible, DD10 was just diagnosed with Juvenile Idiopathic Arthritis. Even worse it's concentrated in her spine, particularly her neck. Her treatment will be aggressive and the rheumatologist has gotten her started on steroids to help give her some immediate relief. We have a short vacation booked to go to Universal this month (3 park to park days) and will be staying onsite with Express Pass. We booked this back in the spring with expiring travel credits and money that is tied up in non-refundable things like park tickets so canceling doesn't really make sense as we wouldn't really recoup much. We already have a wheelchair for her as she also has hypotonia and tires easily so getting around and having a personal bubble from people shouldn't be a problem.

My question is whether there is anything she can safely ride? Almost every ride seems to have a warning against those with neck injuries and her doctor and I went over rides she absolutely can not ride (rollercoasters such as RRR, Hulk, and Mummy, anything that will whip her around quickly). Will getting the disability card even be worth it since we already have express pass? Does the Harry Potter Forbidden Journey ride hold your head in place?

She likes Harry Potter so we expect to get her a wand rather quickly but I worry she'll be bored and depressed being so limited in what she can do. I'm hoping all of the Christmas activities (shows, parade, etc..) will be enough to make it feel she isn't missing out too much. Is there anything at Universal that you could recommend to fill time in the parks or on property that would be safe and enjoyable for her age?

The Express Pass will be your best bet. The disability pass requires you to go to every single ride and get a return time (which they calculate in their head) and then come back. Tiring. The Express Pass is volumes better and what you want. If we had access to Express Pass, we would never bother with their disability pass.

COMPLETE SIDE NOTE: I googled what JIA was because I have had JRA since I was about 6 years old. I guess I learned something because it is saying the term JRA is no longer being used. Now I wonder does the name change as you transition to an adult? What do I have now? Guess I have more reading to do, learn something new every day. (I stopped going to a rheumatologist many many years ago.)

 

[Madteaparty001]

COMPLETE SIDE NOTE: I googled what JIA was because I have had JRA since I was about 6 years old. I guess I learned something because it is saying the term JRA is no longer being used. Now I wonder does the name change as you transition to an adult? What do I have now? Guess I have more reading to do, learn something new every day. (I stopped going to a rheumatologist many many years ago.)

As far as I understand it the Juvenile tag sticks forever because that is when the disease presented itself, so even as a 90 year old DD would still be considered to have JIA.

 

[ajsamett]

I'd suggest, if you really want to see what might be good vs bad, look for ride through videos on YouTube. It'll give you and idea for jerking and restraint setup!

 

[HopperFan]

As far as I understand it the Juvenile tag sticks forever because that is when the disease presented itself, so even as a 90 year old DD would still be considered to have JIA.

Thanks for info. Positive thoughts for your daughter. I am sure current medical maintenance is so much better than when I was younger. By 10 they had me on Darvon, now banned. Hope you have a great trip!

 

[GinnyBear's_mom]

We visited Universal frequently over the past year and a half. I had their DAS (called an Attraction Assistance Pass AAP). I only used it when we didn't also have express passes from our resort stays. The AAP only has 2 benefits over express pass imo- you can use the AAP for Velocicoaster and Hagrid's but you can't use express pass for those rides. With your daughter's health issues those rides aren't advised so I wouldn't bother with the AAP since you have express. Regarding your question about Forbidden Journey, your head moves all over the place during the ride, it is not held in place at all.

My 3 kids are 8, 11 and 14 and are Harry Potter fans. There were days we went to the parks and spent hours in the Wizarding World without doing rides. If your daughter is remotely interested in HP I think she will be able to do the same. We preferred Diagon Alley for ambience on the Studios side, it has a better layout compared to Hogsmeade on the IoA side, and is much easier to navigate. Do the wand ceremony at Ollivander's, maybe get a robe, purchase an interactive wand, do the spells, eat in the themed restaurants, have ALL the themed snacks and drinks, watch the shows (Beetle the Bard was our favorite), talk to Stan Shunpike and the shrunken head at the Knight Bus, explore Honeydukes (the themed wall of HP hard candy is a must-do on each trip) and Knockturn Alley and ride the Hogwart's Express in both directions (different storyline each way).

Molly from Mammoth Club and formerly of All Ears has a lot of great videos on youtube just about the snacks and food of the Wizarding World, maybe have your daughter watch a few to get excited about what she wants to try. There's also a butterbeer challenge- try to drink/eat all 7 forms of butterbeer during your visit (hot, cold, frozen, icecream, etc). The Potter Collector has some shop tours on youtube too.

You can ask for a 'tour' of Hogwart's even if you aren't going on the the Forbidden Journey- they let you in the express line where you can see Dumbledore's office, the portait gallery and a few other things. There are several guided tours of rides that you can do for free. They are not advertised and only happen if they have enough staff but you can ask at the entrance to Mummy, MiB, Jimmy Fallon, Kong and Hulk.

The Simpsons carnival games were a hit with my family, they sell discounted cards that you can use there as well as the carnival games in Jurassic Park.

My kids also spent a lot of time in the Discovery Center where they watched dinosaurs hatch, talked to 'scientists' and played some of the interactive dinosaur games. They occassionally have dino story hour which is hysterical (not a traditional story hour).

The Minions ride has a separate seating area for those with back/neck issues. The seats in that section don't move like the rest of the theater but the 'ride' is still enjoyable in the stationary seats.

There's also an Icee challenge at Umiversal- buy a refillable mug and you can use it at Freestyle machines and at the Icee locations. There are way more Icee flavors than you think at Universal. There's videos on youtube that show you all of the flavors (our favorite is from Shyann & Tudy).

There's a detailed rider's guide here, but unfortunately the vast majority of their rides can't be enjoyed by anyone with head/neck issues
https://www.universalorlando.com/webdata/k2/en/us/files/Documents/universal-orlando-riders-guide.pdf

I hope you are able to have a great trip even if this isn't the trip you envisioned when you first booked it.

 

[ZJ5/9D47]

The Camp Jurassic caves are a lot of fun and there is a wheelchair-accessible route through the cave.

There’s also wheelchair area at the Hogwarts light show and parades but it’s not advertised. Light show area is by the Flight of the Hippogryph entrance. Parade area moves around. If watching the big evening water show, I’d suggest arriving early and getting a front and center spot instead of the wheelchair area that is in the far back and doesn’t even face the show really.

One can spend hours and hours working on wand skills. There are witches and wizards around to help. Meals at both Harry Potter restaurants are worth it for the ambiance. I also love Circus McGurkas for the ambiance. Seuss Trolly should be ok for your daughter and there are two different tracks.

 

[Madteaparty001]

Thank you all for the suggestions, I truly appreciate it. We'll also be the for the Mannheim Steamroll concert, how early should we try and get a spot? Is the wheelchair area in a good spot or should we find someplace else?