Immune disorders?

[Cat1229]

OK, my little man is a preemie and while he was not the smallest, he may never outgrow his issues. Having spent more than half his life in the hospital due to primary immunodeficency and Cronic Lung Disease among possible CF. But he's now 18 months old, and has not been in the hospital for 2 months! This is the longest he's ever been! So its nice to finally be able to look forward to future birthdays not spent in the hospital! We decided Disney would be the best way to celebrate his life and his birth. (ok already tearing up) SO I jumped online and ordered the DVD. We got it a few days ago and it's a nasty rainy day today so I popped it in and the song got me right away. And I started the Main Show going through the overview and within seconds Parker said "whoa!" and quickly followed with a "wow!" I just lost it instantly. The child has been in speech therapy since he was born, and there was very little chance of him saying his first words (not even a babble or coo.. ever) before he was 2 or 3. The DVD continued on and he was pointing and saying the little vowel sounds and signs he knows to express happiness and "more". I've never seen him light up so much!

As I thought more and more about this and made lists of neccissary sanitizing supplies, masks, gloves, etc. I'm just like scrap it. Not going to happen... ever! P has been in quarantine since he was released from the NICU (born at 34 week after my water broke at 30 weeks). We got out for a week last summer and he got so sick following going to a community pool that he was hospitalized for a week. This is when they figured out that he has Primary Immunodeficency in addition to Cronic Lung Disease, eosinophilic gastroenteritis (think food allergies but so extreme you can only eat 5-10 foods safely and have to be "scoped" for every new food you want to try!) and possible CF (clinical diagnosis. PI is screwing with his sweat chloride numbers, genetic testing coming up!). He also has normal kiddo issues like GERD.

Anyways, this is all to be said that I am officially TERRIFIED to take my child to Disney World. I want to make this work but I'm not sure how to make it happen! I know we will definatley get our room medically cleaned and keep cases and gallons of sani and sani wipes on hand. We'll make sure to have o2 delivered and not go within 8 weeks of steroid treatments. But still... UH! Can anyone make me feel better about this??

 

[SueM in MN]

First of all, don't panic.

One of the things I would suggest is using a stroller as a wheelchair. That would allow you to keep him in his stroller while in lines, which would help to keep other guests at more of a distance from him. To do that, you need to go to Guest Relations and request it - follow the link in my signature to the disABILITIES FAQs thread (it's also near the top of this board, if you don't follow the link). Look at post #6 in that thread for information about Guest Assistance Cards, which includes information about using a stroller as a wheelchair.

I would suggest you not use gloves - I am an Infection Control Specialist RN and find that gloves give people a false sense of security. Gloves pick up just as many germs as hands - people touch things with the gloves and move the germs into their nose, mouth or eyes. People need to remember that germs need to get into the body. Most of the time, how they get there is our own hands. People wearing gloves have germs on the outside of their hands and the warm, moist environment inside the gloves helps the germs on your skin to grow. Cleaning your hands frequently is better than wearing gloves. For the adults, alcohol hand sanitizer is a good substitute for washing hands when you are not near a sink. It is not good for infants and small children because they tend to put their hands in their mouths and can absorb the alcohol that way. You can use baby wipes to clean your son's hands. Most important to clean hands before eating, drinking or touching the eyes, nose or mouth.

You can request an extra deep cleaning for your room, there is more information about resorts in the disABILITIES FAQs thread. Some people prefer to bring their own supplies and do a cleaning of frequently touched items.

Post #3 of the disABILITIES FAQs thread has information in different categories that may be helpful for you. There is information about dietary needs, including contact information.

 

[jmartinez1895]

We have a child with immuno issues as well and we have made the trip to DIsney many times and never got sick. We of course washed and washed and washed our hands, use a lot of hand sanitizer ( we found one with out alcholo at walmart that we use for him) and used our stroller as a wheelchair. If you go to guest relations at the first park you go to and tell them about your child's issues, they will be able to offer you more help along with giving you a sticker and GAC for your stroller. We also use face mask for our son when we get in tight crowds ( like the shows ). We have used them since he was a baby and have found the smaller ones here http://www.masksnmore.com/kichfama.html and the best part about these is that they have Disney character on them. Our son doesn't care for wearing them much, and if they are worn for a long time they get hot, so this is why we save them for select times. If you meet the characters you will also need to tell them ( mainly the princesses) to keep them from kissing him. The special cleaning for the room is also very good. When our son was very little, we had a sign on his stroller that read " please wash your hands before touching mine" and we found that this help some with the people who like to touch babies with out asking.

 

[gamomof2]

Ditto to what PP said. Our daughter was diagnosed at 2 with Common Variable Immune Deficiency (CVID). She has been on infusions ever since. You did not say if your son needed the IVIG or daily antibiotics. Also which PID does he have? That will matter alot to what type of precautions he needs. We go to WDW about twice a year and she is now 15. She knows to use good hand washing and does not wear a mask. She is on 8 gms of infusion each week so we make sure to infuse the day before we go. This next trip in July is our longest so she will have to infuse while we're down there.

She does have a transport chair now because of lung issues and fatigue. Also some history of joint problems. But she goes back and forth between walking and riding. Plus she only uses the chair while at WDW or another site seeing situation. She also tends to need to go back to the room now during the day to rest/nap. Plus she's one of the first ones in at night. But all in all the trip works out well.

P.S. lung issues with PID's run similar to CF and immotile cilia. Our DD has had the buccal swab twice, two sweat tests and the blood test and thankfully is negative. She has been found lately to have an Alpha 1 antitrypsin deficiency though.

 

[tinytreasures]

another PID mom here
you can read about his wish in my siggy

we really didn't do to much since we stayed at Give Kids the World and felt they knew how to deal with infections.
At your son's age I would have looked into the mask.
We did great handwashing and planned his IVIG perfectly so he was on his good week.
If your little one is not on IVIG you need to find if he should be.
Get the pass to make his stroller a wheel chair we didn't know about that pass and it was really hard on all of us. (lots of carry kids)

 

[chaoslobster]

I do not have PID thankfully, but I do have a severely compromised immune system due to aggressive treatments for RA. I'm on steroid therapy and chemo, and between that and overall poor health and weakened body, I'm one of those people who ends up with pnemonia because somebody sneezed two miles away. Okay maybe not that bad -- but I do have to be careful about crowded places, wear a mask if it can't be avoided, and carry a small army's worth of anti-bac wipes and hand sanitizer to be deployed on grocery carts, door handles and anything else lots of people touch.

My worst problem with regards to Disney isn't the parks, it's the plane travel there. Planes are a very bad place for people with compromised immune systems. The air is all recycled so if somebody up in first class has a cold, those germs get sucked into the air filtration system and dispersed throughout the entire plane. I would recommend travel by car if that's possible for your family, but if it's not, talk to your battalion of medical people about the trip ahead of time and see what they recommend regarding plane travel.

 

[Cheshire Figment]

My worst problem with regards to Disney isn't the parks, it's the plane travel there. Planes are a very bad place for people with compromised immune systems. The air is all recycled so if somebody up in first class has a cold, those germs get sucked into the air filtration system and dispersed throughout the entire plane. I would recommend travel by car if that's possible for your family, but if it's not, talk to your battalion of medical people about the trip ahead of time and see what they recommend regarding plane travel.

This information is totally incorrect.

Airlines use a zonal system of six to eight rows. They do not recirculate the air but use "bleed air" from the engine compressors to pressurize the aircraft and have relief valves which control the outflow and maintain a pressure which normally, in most airliners, does not exceed 6,000 foot equivalent.

Also, the air is filtered, and, accoring to this artile from Wikipedia

Modern airliners use HEPA filters to reduce the spread of airborne pathogens in recirculated air. Test results from a Department of Transportation (DOT) study conducted on 92 randomly selected flights showed that bacteria and fungi levels measured in the airplane cabin are similar to or lower than those found in the common home. These very low microbial contaminant levels are due to the complete exchange of inside cabin air 10 to 15 times per hour and the high filtration capability of the recirculation system. The filters used on current airliners are similar to HEPA filters used in industrial “clean rooms” and in critical wards of hospitals, such as organ transplant and burn units. By comparison, the filtration systems in typical buildings are not capable of removing microbial contaminants including bacteria and viruses.

 

[jmartinez1895]

Agreeing with PP here. We where afraid to fly our first time because so many people say they get sick after a flight. Our doctor had a print out that told about the air syatems ( very much like the info posted above) and he also told me that most people get sick from touching the surfaces at the airport, like the bathroom, the chairs, the gift shops, ect, and then eating a snack on the plane. Long story short, wash your hands and/ or use sanitizer, if you touched something there is a strong chance that a thousand other people touched it before you.

 

[gamomof2]

I will say this, when we recently took our DD on a plane trip to NIH her pediatric immunologist told us to have a mask on her once we went into the tunnel to the plane door until we exited at our destination.

 

[Cat1229]

I would recommend travel by car if that's possible for your family, but if it's not, talk to your battalion of medical people about the trip ahead of time and see what they recommend regarding plane travel.

We will be traveling by car. First off, thank you SOOO Much for your responses. Our trip has been delayed another year Parker has tested positive for Primary Ciliary Dyskenesia and now is on a ton of steroids, inhaled medications, and o2 and airway clearence vest in addition to the other army of medications he takes daily. It's a rough go the last week, but he's coping. He gets to watch Up or Lilo and stitch on a daily basis so he's ok with that!

Our disney planning has been put on hold for now. We're planning on going in December of 2013 at this point. Hopefully that's out far enough that we'll have all this under control by then.

 

[gamomof2]

Hope the vest helps. Also a device called a Flutter is good.