Any ideas/help for immuno suppressed visitor

[mackay_j]

Hi we arrive in just under 3 weeks . I have not been able to get over exited until now as I was awaiting final docs OK to travel from UK.

I have lupus and MS (well its actually spinal recurring Transverse Myelitis- so cant really walk) - for this issue I have hired a scooter and will have my wc with me. I also need to avoid the sun due to the lupus and the meds I am on. So I plan to go in early leave at 11ish then return after dark.

However the problem that I have not been able to work round is the fact that my immune system is suppresed by chemo type drugs (every day for a total of 5 years ). I had (well the doc did most of the work ) to get my cell count stable for 3 months in a row to get the OK to go to (we had to move our last planned trip as I was diagnosed just before we were due to go, so moved it to just under a year away -THATS NOW- so not to loose the money we had paid)- The are keeping my count just above the lukemia count mark as I have a leasion in my cervial neck area and that would be a bit of a hic up if it got worse- Has anyone any experience of gong with a very poor immune system - I know it can be done as many many very sick kids go here - but not sure what I need to do to improve my chances of staying well other than lots of bacterial hand wash/wipes.

We are staying at OKW is there any extra room cleaning I can pay for esp thinking about the aircon units and the bed throw.

 

[Piper]

I have lupus, RA, and some other challenges. I have been on those "wonderful" drugs, too. The best advice is to just wash your hands frequently and be careful about touching your mouth and/or nose. I go early, leave to rest, and come back later in the afternoon. I also cover up with sun blocking clothing and wear an spf 100+ sunscreen (Neutrogena.) I have a cooling vest which helps in the summer. I also use fastpass as much as possible, I cannot do any of the fast or jerky rides so that cuts out a bunch of the popular (and crowded) ones. There is still a lot to do and see!

 

[mom2girls1974]

My youngest has immune issues (she has Chrones and Celiac, and is 7) the biggest issue we will find with her (her issues are NO way near as complex as yours) are the flight -and I would think with you as well - allot of germs are passed on the plane, at least at WDW it is open air, and you can control if you put your hand on your face or not (KWIM?) on the plane it is circulated air (a nightmare for this mom). My biggest thought there is to wear a mask ( a good one, not a paper one) if you are comfortable with that - but not even sure that would help, and take your suppliments, whatever they are -my kiddo is on a few, but they are specific to her. Not sure if any of that helps at all, but that is my two cents...... good luck to you -have a great time -we will

 

[buffettgirl]

I would absolutely get a mask for the plane (even if you feel like Michael Jackson doing so lol).

And then try to touch as little as possible in the way of railing and handles. Think about where all the kids are touching...And purel purel purel.

 

[Amerch]

We are a make a wish family going in oct . Like every one said mask and try not to Touch rails . On rides you have to hold on you could try disposal gloves . Uva/Uvd shirts help was well to keep the sun damage lower .

If you need the link on where to buy the shirts let me know

 

[mackay_j]

Good idea about the masks, going out to look for one. Thanks for the reminder re UV shirts - I had them on my list, not just for me but water ones for my girls and had just forgotten them- Now ordered.

Hope your child has the most magical wish trip.

 

[Amerch]

Good idea about the masks, going out to look for one. Thanks for the reminder re UV shirts - I had them on my list, not just for me but water ones for my girls and had just forgotten them- Now ordered.

Hope your child has the most magical wish trip.

thank you hope your trip is every thing you wish for as well

 

[SueM in MN]

We are a make a wish family going in oct . Like every one said mask and try not to Touch rails . On rides you have to hold on you could try disposal gloves . Uva/Uvd shirts help was well to keep the sun damage lower .

If you need the link on where to buy the shirts let me know

it is a better idea just to use hand sanitizer and hand washing frequently.
Gloves pick up germs and you can pass the germs from the gloves into the body hru eyes, nose or mouth by touch.
When taking off gloves, it is really easy to contaminate your hands.
So, it's much better just to clean the hands than deal with gloves.

 

[Luv2Camp]

Hello! I also have CNS lupus & transverse myelitis. The drugs are no fun, huh?!

We've been to Disney World twice with my immune system supressed. I followed the same advice above (sanitizer, wash, sanitizer, wash, wash, wash, UV clothes, avoid touching rails, etc). I also rested through the day ALOT, which was hard with so much around me that I wanted to do. We would go to the parks in the morning, go back to Ft Wilderness at lunch, and then back to the parks shortly before dinner. I made sure I didn't cut my sleep at night short too.

I also tried to avoid buffets. I know there are plastic guards to prevent coughing, etc on the food, but my doctors told me to avoid them, so I did.

I hope you have a great time! We're hoping I will be well enough to go in 2014. That gives me something to look forward to!

 

[Luv2Camp]

Oops...Forgot one! I take a Hydroflask with me so I can stay hydrated and flush my meds through me. The Hydroflask keeps my water cold, which helps since I have to drink so much.

I think that's it!

 

[jmartinez1895]

My son has immuno issues and we have always been able to enjoy Disney.
You can call and ask for VIP cleaning and be sure to ask for a new air filter. There is no charge for this service. You can also have the carpets cleaned if you need that. We take disposable place mats ( the ones we buy have little kid characters one them, but it's going in the trash so we don;t much care). When we eat I wipe the table and chair with a sent free sani wipe and then put the plastic mat on the spot where my son will eat.
On the rides, we all use hand gel once we get off and we go to the bath room and wash our hands every few rides.
When we fly, we bring a small bed sheet to cover the chair and sani wipes for the tray. He also wears a mask when flying.
Be sure you go to guest services when you get the park and tell them about your condition. They should be able to offer some help. We also put a mask on our son if we get stuck in a tight crowd of people.

 

[crashbb]

I also tried to avoid buffets. I know there are plastic guards to prevent coughing, etc on the food, but my doctors told me to avoid them, so I did.

Would you be able to ask the chef to bring you out some food? Like a serving just before they brought the trays out? I have food allergies and the chef's at buffets often bring me out safe food (either food not on the buffet at all or fresh food so that there isn't an issue of contamination from people sticking serving spoons into the wrong dishes).

Not sure if that it is possible, but thought I'd raise it as a thought, in case there is some buffet that your family really wants to do (it seems to me that many character meals are buffets).

 

[Luv2Camp]

Would you be able to ask the chef to bring you out some food? Like a serving just before they brought the trays out? I have food allergies and the chef's at buffets often bring me out safe food (either food not on the buffet at all or fresh food so that there isn't an issue of contamination from people sticking serving spoons into the wrong dishes).

Not sure if that it is possible, but thought I'd raise it as a thought, in case there is some buffet that your family really wants to do (it seems to me that many character meals are buffets).

That's a great idea! I really wanted to go back to Chef Mickey's, but didn't want to sit and watch everyone else eat! Thanks for the tip!

 

[loadsapixiedust]

I'm glad you asked this as I am just beginning to research for my next (hopeful) trip when I will have finished 6 months of IV chemo and be back on the oral stuff.

So far I have found info on special VIP cleaning in Disney resorts. Use pleanty of hand sanitizer gel, antibac wipes and disposable cups/cutlery, tissues. Try as far as possible to avoid crowded areas and restaurants (like buffets) where food sits out in the open. If you eat at buffets you could ask for your food to be plated in the kitchen, I'm sure chefs would be happy to help. Hot food should be piping hot don't trust anything that arrives lukewarm. Follow the guidelines for pregnant women as far as food goes, nothing undercooked, wash all fruit and veg, no raw egg, unpasteurised dairy etc.

The flight is a tough one as you cannot really do anything much about the sneezy person who is always a row or 2 away unless you are happy to wear a mask but you can call special assistance and ask about the most appropriate seating, some aircraft (Virgin 747s for example) have a smaller cabin up front with just a few rows of seats which would minimise exposure to other passengers and their bugs, it can be a quieter area to sit the only drawback can be that they seat babies and kids with special needs there too.

Discuss with your medical team whether you can have shots to boost your neutrophil count or take natural immumity boosters like echinacea before you travel.

Be especially careful in the sun, factor 60 all the way for me and a big hat.

I wish you the best of luck with your plans!