DAS Question re: immunosuppression

[amycakes]

My daughter is 14 and was just started on immunosuppressive drug therapy yesterday for the first time. It is sad news. Her rheumatologist advised us it would be ok for us to proceed with our vacation in August. She will be on these meds indefinitely so he wants her to live her life.... we just have to practice good hand washing and keep her hands away from her face. He suggested a mask for the airplane as a reminder. He told us that she would need to rest more often. I do worry about her standing in line for extended periods of time and, as she is more prone to infection now on this medication, it is not ideal.

According to the sticky post, it sounds like DAS is a perfect fit for us ... we don't care about the wait ...just want her to not have to wait in the crowded queue. I do realize that there are crowds everywhere but if we can avoid them in some situations I would like to do so.

Has anyone else had success with DAS for immunosuppression?

 

[camper06]

My daughter is 14 and was just started on immunosuppressive drug therapy yesterday for the first time. It is sad news. Her rheumatologist advised us it would be ok for us to proceed with our vacation in August. She will be on these meds indefinitely so he wants her to live her life.... we just have to practice good hand washing and keep her hands away from her face. He suggested a mask for the airplane as a reminder. He told us that she would need to rest more often. I do worry about her standing in line for extended periods of time and, as she is more prone to infection now on this medication, it is not ideal.

According to the sticky post, it sounds like DAS is a perfect fit for us ... we don't care about the wait ...just want her to not have to wait in the crowded cue. I do realize that there are crowds everywhere but if we can avoid them in some situations I would like to do so.

Has anyone else had success with DAS for immunosuppression?

I have a friend who had stage iv ovarian cancer. She received chemotherapy continually for 4 years (until her passing). The chemo caused a compromised immune system. She went to WDW twice during her treatment, and was able to use the DAS. She felt it was a good accommodation for her and gave her some peace of mind.

I would definitely visit guest relations and inquire about getting one for her. But nobody here can tell you definitely one way or another whether she will get one - basically up to the CM at guest relations. It never hurts to ask! Enjoy your vacation!

 

[amycakes]

Thank you camper06. That is what I was hoping. It is up to the CM... but it is nice to hear that having a compromised immune system is a consideration. The rest of the family would gladly stand in line and, if she could join us just prior to the ride, that would be fine....but that is very difficult to achieve with the lines in Disney.

Sorry about your friend.

 

[redberyl]

Bring sanitizing wipes for the plane; they do not clean in between flights. We just got back with my dd who is immunocompromized, and I wiped down the plane wall, window, seat and tray table . On one plane it turned the wipe black it was so dirty. Bring hand sanitizer and use it often. We also had problems with people touching her wheelchair and using it as their personal armrest, so be prepared for that.

 

[wilkeliza]

Just be clear about what accommodations you feel you need and know it is up to the CM. If your daughter does not have a personal wheelchair you may consider renting one, most suggest off-property rental as you can get a smaller more size appropriate chair. If you are not given a DAS then the wheelchair will provide a barrier and make sure she wears the mask as well.

 

[camper06]

Thank you camper06. That is what I was hoping. It is up to the CM... but it is nice to hear that having a compromised immune system is a consideration. The rest of the family would gladly stand in line and, if she could join us just prior to the ride, that would be fine....but that is very difficult to achieve with the lines in Disney.

Sorry about your friend.

Thank you.....

 

[gap2368]

My daughter is 14 and was just started on immunosuppressive drug therapy yesterday for the first time. It is sad news. Her rheumatologist advised us it would be ok for us to proceed with our vacation in August. She will be on these meds indefinitely so he wants her to live her life.... we just have to practice good hand washing and keep her hands away from her face. He suggested a mask for the airplane as a reminder. He told us that she would need to rest more often. I do worry about her standing in line for extended periods of time and, as she is more prone to infection now on this medication, it is not ideal.

According to the sticky post, it sounds like DAS is a perfect fit for us ... we don't care about the wait ...just want her to not have to wait in the crowded queue. I do realize that there are crowds everywhere but if we can avoid them in some situations I would like to do so.

Has anyone else had success with DAS for immunosuppression?

I have a friend with a primary amundefesions ( she has no immune system of her own and has to have weekly transfusion to give her a little immunsystom as you would guess she is very suitable) she goes to disney some all thought she has never gotten a DAS card ( her mom asked 2 or 3 times) she use a stroller as a wheel chair ( soon it will just be a wheel chair as she is getting older) a mask and a lot of wipes to clean anything around or that she touches. I would have a plane B for if they say you do not need a DAS card like plane FP for the rides you want to do most do RD then FP starting about 10;30 then a break ( this may all so help if she has any type of fatigue ) and then hit the parks after dinner but yes I would defiantly go to GR and talk to them. and remember that the ride cars are not cleaned that often so you need to think abut this. for some rides you can stay in a wheel chair for

 

[jo-jo]

I have no knowledge of the condition so this may be a really stupid idea, but are there gloves she could wear? Another barrier between her and the germs???

 

[minnie mum]

My daughter is 14 and was just started on immunosuppressive drug therapy yesterday for the first time. It is sad news. Her rheumatologist advised us it would be ok for us to proceed with our vacation in August. She will be on these meds indefinitely so he wants her to live her life.... we just have to practice good hand washing and keep her hands away from her face. He suggested a mask for the airplane as a reminder. He told us that she would need to rest more often. I do worry about her standing in line for extended periods of time and, as she is more prone to infection now on this medication, it is not ideal.

According to the sticky post, it sounds like DAS is a perfect fit for us ... we don't care about the wait ...just want her to not have to wait in the crowded queue. I do realize that there are crowds everywhere but if we can avoid them in some situations I would like to do so.

Has anyone else had success with DAS for immunosuppression?

I've been on a drug similar to what your DD is on for quite a few years ( there are several in this family of drugs that have the same effects). I'd like to point out that the degree of immunosuppression is not nearly as great as what one would see in patients undergoing cancer chemotherapy. I've never felt I required a DAS, although I do use sensible precautions such as hand washing, using hand sanitizer, avoiding touching railings, and wiping down tables with sanitizing wipes. I've had several trips to Disney parks, and travelled to many different countries while on this drug and, knock on wood, I've never gotten sick (other than a cold I caught from DH).

You have a few months before your trip. See how she does in normal day to day at home, at school, and amongst her friends, before deciding on whether extra accommodations are necessary.

A mask for the plane may be a good idea, since the air is recirculated and for that reason would expose her to more germs than elsewhere. Gloves are total overkill and unnecessary. A wheelchair will likely be a good idea because of her RA, not because of her medication.

 

[DisneyOma]

I have no knowledge of the condition so this may be a really stupid idea, but are there gloves she could wear? Another barrier between her and the germs???

The gloves would protect her hands, but she would get germs on the gloves and still get them on her face, etc, if she touched her face.

I think the idea of a mask would work well, to remind her not to touch her face, but it could get hot and uncomfortable.

The DAS would work for attractions that have a FP+ queue, but it doesn't work for buses, restaurants, or other places you need to wait in a crowd. Have a strategy for those places as well, and hopefully she'll be OK.

If she needs to rest often, get a wheelchair. WDW is a lot of walking for a healthy person, never mind a person who needs to rest. The wheelchair would also work well as a buffer, to a point, but it would put her in the direct line/height of kids, who are not the most sanitary organisms on this planet.

Avoid the wet rides - the water is not the cleanest, that's for sure, and the vehicles tend to be damp - breeding grounds for nasty stuff. Avoid splash pads and those mist sprayers too. While the water coming out should be clean, toddlers in diapers add a level of 'ew' that you should watch out for.

 

[amycakes]

We will definitely have a plan B for sure.

I am worried gloves would give her a false sense of protection. I would rather her wash her hands and use hand sanitizer I think. Not a stupid idea... I tossed it around a bit myself.

She does not have rheumatoid arthritis.... she had an abnormal biopsy I believe a wheelchair would only be necessary if she gets tired.... but at that point I think heading back to the hotel for a rest would be the best plan. But I don't know what we will be dealing with so, if she thinks she needs a wheelchair, we will get one for sure. We are now going to rent a car so we can leave when we like and avoid the whole bus situation.

I plan to be at the parks early and take advantage of lower crowds. We definitely will be getting our fastpasses. Afternoon breaks will be new to us but I will plan for them... maybe get my fastpasses for late morning/early afternoon (if I can) and then take off.

Antibacterial wipes will be our new travelling companions! I think a mask will also be necessary on a plane but wearing it in August in the Florida heat it may do more harm than good.

She has been told to avoid hot tubs and standing water so I will avoid splash pads... I did not think of the rides though... good point.

Minnie mum, I am happy to hear that you have taken similar meds and have had minimal troubles/complications. We are hoping for the same. We are in our 'wait and see' phase so we will definitely monitor how she makes out the next couple months. She also was cautioned against eating certain foods and I would think buffets are out? Her favourite restaurant is Crystal Palace .... Tusker House is her second favourite. Have you had problems with any foods/food prep?

Thanks everyone for your suggestions and comments...

 

[Pridemom]

My 16yo daughter takes immune suppressants (Methotexate and Enbrel) for Juvenile Arthritis, as do I. As a teen, she is old enough to understand how important frequent hand washing is. We go to WDW this July. On the plane we will dab a little Vaseline in our nostrils to help stop germs, but I won't make her wear a mask. She's been on these drugs for 2 years and hates to look conspicuous.

As for DAS, standing in line is exhausting, so it will help fatigue that comes with rheumatogical conditions. Use a wheelchair. My daughter enjoys her time in a theme park more if she's not worn out from walking all day. To have the energy for multiple days is invaluable.

 

[minnie mum]

She also was cautioned against eating certain foods and I would think buffets are out? Her favourite restaurant is Crystal Palace .... Tusker House is her second favourite. Have you had problems with any foods/food prep?

I was never warned about avoiding certain foods, and I've eaten at buffets at WDW and at vacation resorts with no problems. There are also no published warnings against certain foods for the drug I take ( Enbrel). You may, however want to avoid raw meat, eggs, and milk, since they can have high bacterial counts. But this holds true for the general population too.

The only thing I have to be really careful about is immunizations. I can't receive any immunizations that use live virus while on the drug, and have to avoid being around anyone who has chicken pox. Immunizations using killed virus are perfectly OK. And I had to stop the drug for a couple of months when I had surgery, because of the increased risk of a post op infection. Other than that, and needing preventive antibiotics for an invasive dental procedure, my normal daily activities haven't been impacted at all while I've been on this med.

 

[Betty Rohrer]

We will definitely have a plan B for sure.

I am worried gloves would give her a false sense of protection. I would rather her wash her hands and use hand sanitizer I think. Not a stupid idea... I tossed it around a bit myself.

She does not have rheumatoid arthritis.... she had an abnormal biopsy I believe a wheelchair would only be necessary if she gets tired.... but at that point I think heading back to the hotel for a rest would be the best plan. But I don't know what we will be dealing with so, if she thinks she needs a wheelchair, we will get one for sure. We are now going to rent a car so we can leave when we like and avoid the whole bus situation.

I plan to be at the parks early and take advantage of lower crowds. We definitely will be getting our fastpasses. Afternoon breaks will be new to us but I will plan for them... maybe get my fastpasses for late morning/early afternoon (if I can) and then take off.

Antibacterial wipes will be our new travelling companions! I think a mask will also be necessary on a plane but wearing it in August in the Florida heat it may do more harm than good.

She has been told to avoid hot tubs and standing water so I will avoid splash pads... I did not think of the rides though... good point.

Minnie mum, I am happy to hear that you have taken similar meds and have had minimal troubles/complications. We are hoping for the same. We are in our 'wait and see' phase so we will definitely monitor how she makes out the next couple months. She also was cautioned against eating certain foods and I would think buffets are out? Her favourite restaurant is Crystal Palace .... Tusker House is her second favourite. Have you had problems with any foods/food prep?

Thanks everyone for your suggestions and comments...

just remember it can be a walk from where you are in the park when you leave for you rest plus you will most likely need a tram to your car at all the parks but MK which will require a monorail or ferry ride plus tram to your car. ramp to monorail is steep very rough if you are tired or the line is long. esp MK you might want to use buses as they are right at the gate. [lus there is no tram to handicapped parking and it is a walk

 

[disfan07]

I've never gotten a DAS (or the former GAC) for immunosuppresion. I was on High dose prednisone for 3 1/2 years. After that, MTX for 4 1/2 years. On and off high dose steroids including 2 types of budesonide for 2 years. Now, I am on chemotherapy plus oral prednisone and hydrocortisone. And we also just found out that I have a mild secondary immune deficiency. Honestly, we've been to Disneyworld about 10 times, and Disneyland about 10 times as well, while on all these meds and never considered getting a DAS. For me personally, it wouldn't have helped. Wearing a mask and sometimes gloves was all I ever did and made it through all of those trips without getting sick (except a cold....but that always happens after being on a plane). And for me, wearing a mask has as much to do with my food allergies than with my immunosuppresion. The only time we used a wheelchair was when I started to suddenly retain water/3rd space and it swelled my knee to twice it's size. Otherwise, we just planned breaks at the hotel. We did get me a DAS last summer but not for the meds. I needed it for Hyperinsulinemic hypoglycemia and for eosinophilic colitis. In truth....we never used it. In addition, I never avoided buffets or any other restaurant. However, truth be told, I never eat straight from the buffet because of my long list of allergies but even so, it was never advised to me not to

 

[DisneyOma]

OP, can your daughter walk for miles, several days in a row? I think you should rent a wheelchair offsite for your trip, or at least get one in the parks. She doesn't have to sit in it all day, but it would save her energy if she had one for the long stretches of walking.

 

[SueM in MN]

If you get a wheelchair, she can use it when she wants/needs and park it when she wants to walk. Using it in lines also gives a little 'buffer' between her and other guests and makes it less likely she will touch things like handrails in line.

I am an RN, working in Infection Control and would advise against gloves. As has been mentioned, they can give a false sense of security and will get germs on the outside. When taking gloves off, those germs can be easily transferred to the hands, so she would need to clean her hands anyway. Besides that, gloves get warm and provide a good environment for the germs that are normally on the hands to multiply.
Frequent hand hygiene and avoiding touching eyes, nose and mouth are a better bet.
The mucous membranes of the eyes, nose and mouth/throat are a frequent place for germs to enter the body. And, the most frequent way for them to get in is by being carried there by hands.

Most infections people with immunosuppressive get are from germs that are already colonized in their bodies (living in the body without harm). The human body has about 10,000 germs per square inch! Most of them live without causing any problem and are considered 'normal flora'. Some of the normal flora keep the number of potentially harmful germs down. Some are even important for body function (some of the germs in the GI tract actually help to break down food). Even germs that can be potentially harmful may be harmless as long as they stay in their 'usual' place.
That's the reason for taking antibiotics before dental procedures - some of the germs living in the mouth get 'disturbed' and may end up carried by the blood stream to places where they could cause harm if they grow.

As for a mask, it makes sense on the airplane where we already know the air does not get germs filtered out. It also makes sense if she does go on any rides where you are concerned about water splash. But, the outside of the mask would be considered soiled and it's hard for people to not touch it, which could spread germs/soil from the mask to the hands and then to the mucous membranes - or directly to the nose if the mask gets moved around and touches the nose (it seems like as soon as you put a mask on, your nose will itch).
Also, once the mask has been worn a while, it gets damp inside from breathing. That makes it harder to breath thru and also it doesn't filter as well.

 

[amycakes]

Maybe a wheelchair would be the best option?? I will see how her stamina is close to the trip...there is so much walking. She is an athlete (I hope she can still remain one). She plays hockey and was captain of her team this year. Hopefully that will serve her well. The thought that she may need a wheelchair breaks my heart. She looks so tired lately. She's tough though. As more symptoms arise I know she will remain strong.

All the warnings the nurse and doctor gave us were scary. She is most worried about losing her hair with jr. prom coming up. I told her that I think that would be remote. But I guess they have to present worse case scenario. It is reassuring to hear that people go to Disney while on these meds and don't get sick. A mother does nothing but worry Lol

My children don't know about this trip... it's a surprise and a very hard secret to keep. They think we are going next year Lol. I checked out this board just to see if anyone else traveled while immunosuppressed and how they coped. I want to investigate all our options just to be prepared for whatever could come up. I'm a planner and I find being on this board right now a welcome distraction. I thought the DAS would be good because she could sit out of the crowds and rest and wait for her ride but I guess I will check out the wheelchair rental options and how that all works just in case.

I'm glad I haven't booked my fastpasses yet because now I will make sure I allow for a break and I may have to juggle some ADRs. With regard to the buffets, I think I will go with her and help her chose... while avoiding the foods they told her to avoid. I don't know yet. We only have 2... tough call. We may need to try somewhere new!

Just reading this board has been so helpful and enlightening ... so may people with so many challenges still getting out there and enjoying Disney life!

Thanks for all your suggestions. I really appreciate them.

 

[jmartinez1895]

I just wanted to chime in on the buffet issue. Years ago my son had immune system issues and the doctor had warned us not to eat at buffets, but Disney was great. If you want to eat at a buffet just tell your server about the issue. Most of the time they got the chef and sometimes it was a manager, but they would take my son to the line and walk with him while he told them what he wanted . They then took the list to the back and plated his food with items that had not been brought to the buffet yet. We have had them do this at several locations over many years.
We also took disposable forks for him to use ( we would keep them in a baggie) because at some of the quick service places we didn't know if whoever stocked the dispenser had washed up first.
We took a few tubes of Clorox wipes with us. I try to use ones that don't have a strong sent and I use it quickly and then throw it away of put it in a baggie as soon as we are done in case someone near us is sensitive to the smell. We would wipe his chair and the table. We also used disposable place mats just to give that extra layer.
One thing that we did not think about until one of the doctors brought it up was napkins. Most people keep their napkins on their lap, but if you have been on rides with lap bars and walking through public brushing against things you may not want to keep your napkin there. He would keep it on the place mat.
I know some of these suggestions may be overkill, but it gave us a greater peace of mind.

 

[amycakes]

wow jmartinez1895... Thanks for all that info! half of that stuff I did not think of. The doctor was pretty stern that she avoid certain foods... I definitely would rest more at ease if the meal was plated away from the buffet...and she would still be able to enjoy the characters too! Some children that enjoy the buffet don't seem to have the best hygiene around the food area. Never really worried about it too much before as we were all healthy... but things are different now. Did you have to arrange that in advance like you would for an allergy... I think people with allergies have to call in advance?

Never even thought about the napkin thing. Great point! And picking up those little packs of plastic cutlery would be so easy. Adding this to my list!

Peace of mind is everything!