Looking for advice for 1st ever trip with immune compromised DS

[ny3boys]

Hi! Our family is taking our first ever trip to WDW in Nov! DS3 is 6yo. He has a primary immune deficiency (low IGA and IGG), significant asthma, allergies, severe GERD and chronic sinusitis. He also has recently stopped gaining weight. He is about 39lbs. He can function fine at home and school and plays instructional league soccer. He does tire easily at times, and is currently recuperating form whooping cough (his immunizations didn't fully "take" because of his immune deficiency!). Neither DH nor I have ever been to WDW either, so I am just looking for some advice on what we can do to keep DS3 as healthy as possible. We can't really afford to go back to WDW again for a long time, if ever. I did rent a stroller for him, thinking he will not be able to walk the entire time. I read that we may be able to get it tagged as a wheelchair, so that he can sit it in during waits in line. Is that something I should look into? That would also keep him from touching a bunch of germy stuff and a little bit farther away from tons of germy people! We know about washing hands a lot and Purell! I am planning on bringing medical grade disinfectant wipes for the plane, hotel room, stroller, etc. My other 2 boys are DS1 who is 9, and DS2 who is 8. My FIL and MIL will be with us for the first few days of the trip also. Do I need to worry about food choices with his GERD? Is that something I need to tell them ahead of time? Normally we just don't get him anything that is fried, or with tomato sauce, or oranges, chocolate, etc. I am an almost OCD organizer/planner and would love to hear anything that could help!

 

[clanmcculloch]

I think you've got the majority of stuff covered. You shouldn't have any trouble getting him food that isn't fried or containing one of those foods you listed. Kids meals have side options such as apple slices, grapes, and jello and some TS restaurants even have some grilled options for kids meals. If you're getting him a pasta kids meal then you can easily ask for it without the sauce or you can look for a place that serves mac & cheese. You can probably get a pizza without tomato sauce as well. In Epcot there are all sorts of interesting options that meet the requirements you're talking about (around the World Showcase as well as Sunshine Seasons). TS restaurants can work with even easier. If you're not using a dining plan then you can get him anything you want off the menu or split your meal with him. It really shouldn't be difficult, other than getting him to understand that he'll see LOTS of chocolate treats all over the place but he can't try them.

I would recommend looking over menus to see which places have foods that look easy to modify to meet his needs, if they're not already. It makes things a lot easier for you if you can see that they've got something to work with without having to do a lot in order to make it work for him. If it does look like food will need to be customized (more than just leaving off a sauce) then note it on your ADR but if not, it's easier to just let the server know what you want done with his food. You're not worrying about things like cross contamination of allergens so make it easier on yourself and just work with the server. Waiting on the chef takes a looooot longer. It's worth it when necessary but if you can get away with simple instructions to your server then go that route.

The one thing I'd like to suggest is unrelated to Disney. Have you ever discussed celiac with his doctor? The prevalence of IgA deficiency among those with celiac is significantly higher than found in those without it. You can't test for celiac in a person with IgA deficiency (the regular tests look for IgA antibodies and unfortunately for you the alternate tests look for IgG antibodies) so really the only way to test is a gluten free diet. Celiac really would explain the lack of growth and the GI problems. It's at least something to think about.

 

[ny3boys]

Thanks. I don't think we will worry much about the food then. We do have the dining plan and it looks like most places have something he will eat, or can be modified rather easily. And he is really good about not eating "bad" foods. The only exception is ketchup. I have not found an alternative that he will accept for that. So we sometimes let him have a little bit-since he is so good about everything else.

hmm. His ped tested him for celiac- but I think she did a blood test. I didn't know it wouldn't work in IGA deficient kids. I wonder if she does? His immunologist doesn't seem concerned about it since he doesn't have any diarrhea or abdominal pain. The reflux is mostly silent- they found that in testing for his chronic sinus disease.

 

[clanmcculloch]

hmm. His ped tested him for celiac- but I think she did a blood test. I didn't know it wouldn't work in IGA deficient kids. I wonder if she does? His immunologist doesn't seem concerned about it since he doesn't have any diarrhea or abdominal pain. The reflux is mostly silent- they found that in testing for his chronic sinus disease.

This is a common misconception about celiac. Not all celiacs have diarrhea or abdominal pain or obvious GI symptoms. Lack of growth is a common reason to evaluate for celiac and even just an IgA deficiency is a reason to evaluate for celiac. Some people are actually diagnosed based on testing of skin issues (there's a skin manifestation of celiac).

Most of the blood tests look at IgA antibodies. If you're IgA deficient then there's no way your antibodies will be high enough to get a positive test result. The other less accurate tests look at IgG antibodies. If you're deficient in both then none of the tests will yield any kind of accurate results.

 

[ny3boys]

I got some reputable information off of the internet and will talk to his pediatrician next week at his next appointment. Thanks. What about using the stroller as a wheelchair. How would I do that. Or since he doesn't use one at home, can we not do it at Disney?

 

[ecatzippy]

Hello! I have an 9yo who was diagnosed with PIDD at 6 and we have been to Disneyland multiple times and WDW once. For us nothing seems to be more dangerous than school and however well he is doing there seems to carry over to everything else. Is he already on IVIG/subq replacement and/or prophylactic antibiotics ? If yes that should help. The only difficult trip we had was when he was 6, during the diagnostic testing, and we would have fared much better with a part-time stroller because he was chronically fatigued. We go at rope drop on early entry days to avoid lines and collect fast passes along the way. By doing so we have gone on some of the busiest days of the year without meaningful line waits. By noon we are headed back to the hotel for a break. We return later for less popular attractions. Get the stroller if he needs it. You can always change your mind. I hope you have a fabulous trip!

 

[ecatzippy]

I forgot to add some PIDD parents have gotten the stroller as a wheelchair If they have needed it.

 

[Kellykins1218]

What about using the stroller as a wheelchair. How would I do that. Or since he doesn't use one at home, can we not do it at Disney?

Just go to Guest Services at whichever park you visit 1st and explain why you need it. They'll give it to you with no problem.

 

[ny3boys]

Thank you. Wen he was diagnosed he was 2.5. The immunologist was hoping he would outgrow it. So they did have him on antibiotics during prek and kindergarten. He became allergic to one class of them, and seemingly resistant to another. So, they took him off of them for this year. We just started 1st grade on sept 4th. If he doesn't do well this fall, then the ivig is on the table. They also hoped that treating the GERD would make the infections less, but so far we haven't seen it, and he's been on the reflux diet and meds for over 6 months. We went to a college football game this weekend and I had to carry him part of the way back to the car, so the stroller will be necessary. Thanks for everyone's advice so far!

 

[ecatzippy]

I hope your fall season goes well. Starting weekly subq Hizentra last spring at age 8 after 1.5 years solid of antibiotics was one of the most gut-wrenching yet best decisions we have ever made. If you aren't already bringing some you might want to ask your doctor for a travel antibiotic prescription in case you need it.

 

[ny3boys]

I have thought of that- or even just putting him on the prophylaxis for a week or two ahead of time, and during the trip.

 

[ratlenhum]

I have thought of that- or even just putting him on the prophylaxis for a week or two ahead of time, and during the trip.

My son has 3 auto immune disorders but his worst one means avoiding strep like its the plague. Hard to avoid in a place like WDW. My son takes Zithromax prophylactically all the time but we increase his dosage when we travel. Between WDW and the recirculated air on the planes he would be doomed.

 

[ny3boys]

I wondered about the plane. My FIL gets sick every time he flies. I plan on using the chlorox wipes on the plane for surfaces, but I thought about a mask too. I doubt he would keep it on though.

He took Bactrim the first year, but that is what he is allergic to now, so he has to avoid all sulfa containing drugs. He took the azithromyacin the next year, but there were concerns of resistance to penicillins, so they didn't put him back on it this fall- they want to keep it in reserve in case he can't take the penicllin class either later.

 

[SCIrishMama]

Yay for taking your little zebra on a vacation of a lifetime! I am going for the first time since my diagnosis (low IgG, IgM) along with lupus and multiple other auto-immune diseases. My immuno is having me get my IVIG a week earlier (5 days before we go), and I am bringing along antibiotics just in case. I am renting a "scooter" so that I don't tire too easily to keep up with my children, and will be getting a GAC as well. My doctor suggested contacting the resort and having them do a full allergy cleaning and then my husband will probably wipe everything else down for me anyway. And TONS of hand sanitizer. Have a wonderful trip!

 

[ny3boys]

and will be getting a GAC as well. My doctor suggested contacting the resort and having them do a full allergy cleaning and then my husband will probably wipe everything else down for me anyway. And TONS of hand sanitizer. Have a wonderful trip!

What is a GAC? I didn't know they could do an allergy cleaning? He has some envirnomental allergies too. What is that all about? Thanks. I love all of the info I am finding here!

 

[lanejudy]

What is a GAC? I didn't know they could do an allergy cleaning? He has some envirnomental allergies too. What is that all about? Thanks. I love all of the info I am finding here!

GAC is "Guest Assistance Card" and is a communication tool to let CMs know about hidden disabilities. If you wish to use the stroller-as-wheelchair, you will need a GAC and hangtag. See the FAQ sticky near the top of this forum for more information.

You can request a cleaning before checking into your resort room. Have it noted on your reservation. One suggestion, though, is to be very specific as to what you expect -- what areas to clear, what cleaners to avoid, etc. Don't just assume that your definition of "allergy cleaning" matches the housekeeper's idea.

Enjoy your vacation!

 

[ksh1111]

I have CVID, and spent 12 days last Fall at WDW. I didn't have any issues with cleanliness there at all. My passion is travel, and my Immunologist supports me in whatever way he can. I do not mask to fly, I do wipe all my areas down with a clorox wipe, use hand sanitizer and wash my hands a lot.

I didn't ever have an issue with sick people while at WDW, though we tended to avoid the Food Court at the Resort at peak times, because there were a lot of sticky hands and small children around those times.

For me the biggest thing was pacing myself, and taking a mid day break. I still got ill and ended up on antibiotics, but only oral, not IV, so I considered that a success.

We are vigilant about wiping down our room with Clorox wipes, including inside drawers, handles, nightstands, etc. Despite our precautions, I got H1N1 on a Cruise to Mexico, and flying home with Pneumonia was a drag! Doesn't stop me from traveling, though.

Celebration Hospital is close and quite helpful, if your son needs to be seen.