I have posted about my oldest son’s medical issues over the years. Started at University of Kentucky Hospital but their pediatric stuff is pretty limited so we have been going to Cincinnati Children’s Hospital for 5 or so years. A couple of very broad diagnosis with no explanations only some ways to somewhat manage his blood sugar issues.
Anyway he was referred to Children’s Hospital of Philadelphia’s (CHOP) Undiagnosed Disease Program. The program has been up and running for 6 years with over 16,000 applicants and they have not reached 2,000 acceptances yet. We did not really think he would be accepted but he has been so we’ll be spending some time in Philly.

First scheduled visit is outpatient so looking for a nice safe place to stay. Somewhere with a kitchen would be nice as my son is Gluten Free and being able to cook ourselves makes life quite a bit easier. Along with a quality grocery store near by.
If you know of any good Gluten Free places to eat that would be helpful as well.

1st trip up we’ll get in a couple days early to see the sights. I have not been there since I was a kid so good suggestions of sights to see and things to do with a 12 year old would be appreciated.

This message has been edited. Last edited by: Black92LX,

Have you checked for a Ronald McDonald House in the area?

I don't know that area well enough to suggest lodging.

However, kids always find "The Franklin Institute" interesting to see. There is also the NJ Battleship nearby.

Reading Terminal Market is a good place for a lot of food options.

My wife uses an app called “find me gluten free”, she sats it works well to find gluten free restaurants in a new area.

Looks like there is a Flyers game one of the nights we are there. Going to try to get some tickets. Need to reach out to them about their gluten free options and medical necessity cooler procedures.

quote:

Originally posted by L90814:
Have you checked for a Ronald McDonald House in the area?

They offered when they scheduled our visit but we declined. The one is Cincy stays booked and there are so many more folks that actually need to stay there. So we don’t want to take a spot from someone who could really use it.
They also offered a free flight through a group of volunteer pilots that fly folks for medical flights. Pretty cool program think we’ll be adding it to our charitable giving list.
https://skyhope.org/

We are fortunate so far that insurance has covered most of his care minus his continuous glucose monitors. There was some mitochondrial genetic testing needed that insurance would not cover but CHOP paid for it with their research funds.
Thankfully we are in a spot that we are able to afford the travel and accommodations so I don’t want to take resources from folks that are truly in need.

quote:

Originally posted by iraIII:
My wife uses an app called “find me gluten free”, she sats it works well to find gluten free restaurants in a new area.

We use that as well. Just nice to have as many suggestions as possible.

I don’t have any suggestions but please know that I am praying for a successful trip.

All the best.

CHOP is an amazing hospital.

I’ve used the Home2Suites by the Convention Center twice and it was safe and clean but kind of basic. I’d be tempted to stay further out and get an AirBNB. Plenty of grocery stores nearby due to colleges.

Just sent you an email.

A few decent hotels in Bensalem on street road/RT132 which is just outside NE Philly. I think one is an extended stay so should have some sort of kitchenette.

It's a big area, with multiple CHOP facilities. Do you have an address of where your appointments are?

My son goes to school there, and they have a hotel right beside them that was ok, and there was parking right across the street. I'd give it an 8 out of 10 for good hotel and feeling of safety. It might be an option, but I'm not sure it's close.

If you'll be there for a few days and want a kitchen, check out the Residence Inn Philadelphia Valley Forge (600 Swedesford Rd, Berwyn, PA).

It provides easy access to 76 to get you into the city if you need to go to that CHOP location. There also is another CHOP location close by the Residence Inn, if you should happen to need to be at the CHOP Valley Forge facility. Like 10 or 15 minutes away.

The Residence Inn there is in a fine area (just some traffic noise from 202). Very convenient to King of Prussia Mall, Valley Forge Nat'l Park and all sorts of other amenities and a grocery store.

A coworker of mine had to have her family stay at that Residence Inn for a while after a tree fell on their house. She had no complaints.

quote:

Originally posted by Oat_Action_Man:
If you'll be there for a few days and want a kitchen, check out the Residence Inn Philadelphia Valley Forge (600 Swedesford Rd, Berwyn, PA).

It provides easy access to 76 to get you into the city if you need to go to that CHOP location. There also is another CHOP location close by the Residence Inn, if you should happen to need to be at the CHOP Valley Forge facility. Like 10 or 15 minutes away.

The Residence Inn there is in a fine area (just some traffic noise from 202). Very convenient to King of Prussia Mall, Valley Forge Nat'l Park and all sorts of other amenities and a grocery store.

A coworker of mine had to have her family stay at that Residence Inn for a while after a tree fell on their house. She had no complaints.

I'd also say this will be your best bet. Staying right near the hospital will be insanely expensive for both parking and lodging and your options will be limited.

As far as coming to see some sights, these are always fun places:

Franklin Institute

Independence Hall/Liberty Bell (VERY long lines for Liberty Bell, be warned and getting tix to Independence Hall tour has become hard apparently)

Franklin Court: site of Benjamin Franklin's home in Old City Philadelphia with working Colonial printing office and post office, a museum and his "ghost house" structure showing where his home stood. Lots in that area. We were just there with the kids this past weekend

The Museum of the American Revolution, was there this past weekend too. A really nice museum

The Mutter Museum

Reading Terminal Market

I believe CHOP works with several of the local hotels to provide discounted rates for patients families. We had an overnight stay due to a surgery the following morning for our one son probably 10 years ago. The rate was reasonable and if I remember correctly the parking garage was included in the price. We stayed directly across from Reading Terminal which we purchased dinner from and walked to the Liberty Bell while there. We didn't physically go in due to carrying, but still a nice opportunity to see it.

I highly recommend the White Dog Cafe. I think there is one only a few minutes from CHOP (coworker was out there with his son and I know they stopped at one since I've been to one of their other spots).

Wishing the best for you all.

Trip is not too far away now. Ended up getting a room at a Hampton Inn close to the CHOP location we’ll be at. We’ve had good luck at Hampton Inn’s.

I was able to get us some Flyers tickets. 9 rows from the ice. Looking forward to that. I have never been to an NHL game before.
Just minor league and college.

How is Philadelphia from a safety standpoint. Are we pretty good walking around most places during the day? The only place we’ll really be at night is after the Flyers game.

I need to call them as they have not answered my emails about Gluten Free concessions and medical cooler protocol or if they allow the police to carry.

The arena and Stadium are in a fairly easy to get to area and we’ve never had any issues there.

What game are you going too?

The ADA allows you to bring gluten free or other food and drinks due to medical necessity if the business doesn't provide it.

I am Celiac, so I am quite familiar with the challenges of finding truly safe food. Not just claimed by the restaurant as GF, because contamination is everywhere. Servers and kitchen staff can be cavalier, not realizing the consequences.

quote:

Originally posted by Black92LX:


How is Philadelphia from a safety standpoint. Are we pretty good walking around most places during the day? The only place we’ll really be at night is after the Flyers game.

Yes you will be fine. This is University City in West Philly and a major residential and school campus area section with lots of people and minimal riffraff. Just as always keep your head on a swivel, watch out for aggressive panhandlers and the million people on electric scooters and bikes zipping around like crazy now.

quote:

Originally posted by Fly-Sig:
The ADA allows you to bring gluten free or other food and drinks due to medical necessity if the business doesn't provide it.

I am Celiac, so I am quite familiar with the challenges of finding truly safe food. Not just claimed by the restaurant as GF, because contamination is everywhere. Servers and kitchen staff can be cavalier, not realizing the consequences.

Yes. Familiar was well just curious on their specific procedure.
We have Bengals season tickets and have to go to a certain gate for our cooler/bag to be inspected. Then we get cool little bracelets.

Black, best wishes with your son’s condition.

Someone suggested the Mutter Museum as a possible visit. While it probably won’t appeal to younger kids, older kids and adults interested in the human body and medicine in general may enjoy it. It was my wife’s favorite attraction in Philadelphia (though I must admit that she’s an RN) and I enjoyed it, too.