First time 'dream' trip to Disney

[larsonhope]

Hi there. I found this place today and am hoping someone can help me out with some information. I've looked around on here - but still am not sure about my questions.

We will be traveling in 2 weeks to Disney World with our 14 year old son - who has chronic health issues (CVID mainly). He just got out of the hospital (hit 45 days for the year) a couple of days ago - and this opportunity for us to go to Disney came up. This will be a dream come true for him - something he has asked to do but due to his health and its related issues - we've never been able to make it happen for him.

The concerns we have are:

1. He is not able to regulate his body temperature - so we know that the heat will impact him - but have talked with his doctors on how to deal with this.

2. He tires pretty easy. Partially due to his condition and partially due to his medications. This also gives us concern because we will need to make sure we are cautious about his time in the sun (again, due to problems with the medications he takes). We wonder if we need to be more concerned about him being able to 'hear'. He has a moderate hearing loss in both ears - but we don't know if there's any reason to think that why 'normal' hearing aids and 'we know how to help him out' things won't be enough?

3. This is a 'first' for us - so we are planning the best we can - but would appreciate ANY tips from anyone who has done "Disney" with a child who has serious medical conditions.

4. We normally carry our 'bag' of medical info with us whenever we travel - but wonder if there's any need for anything 'specific' when at Disney?

There are other health issues on our radar - but those are at the front of the list!
Thanks in advance,
Hope

 

[trolleyfanma]

We have traveled to the world with our DD10 who has CVID also. In fact we just returned from the IDF National Conference in WDW- it was HOT! Some things we use to keep her cool were:
1. Get the GAC pass to avoid standing in long lines (also keeps her away from being stuck in line by sick people) and usually they are indoors

2. Use a stroller/wheelchair- she was able to sit whenever she needed

3. Those battery fans worked great to cool her also

4. I brought a lightweight sweater for if she got cool while inside with the AC.

5. If the medicine is affected by heat be sure to pack it in an insulated cool pack or you can store it at the parks' First Aid. Check with your pharmacist about how to properly store the medicine as some cannot be right near a freezer pack.

6. We found that DD (also has a problem regulating body temp) really could not tell when she was too hot so I had to really keep an eye on her- pushing fluids all day helped.

7. DD swears that the cooling neck bands work for her- I do not like them but she loves them.


She is not able to go in public pools so we just went back to the room to rest in the afternoon. Some other things we do are use Purelle or hand wipes after every ride and before eating, get free ice water from cs restaurants and mix lemonade packs into them.

HTH, Trolleyfanma

 

[Schmeck]

Do you really have to go now - July and August are the hottest, most humid months at WDW, crowds are incredible (and a GAC only works for attractions, not restaurants, bus lines, etc) and if someone has a problem regulating body temp, I'd think it would be too risky.

There's a lot of outdoor time that can't be avoided, as in, waiting in line to go through the security check to get into the park, waiting for transportation, waiting for the afternoon parade, etc.

If this is your only option, be prepared to get to the parks at rope drop, use fastpass where available (works better than a GAC sometimes, and is easier to plan around) leave the parks in the early afternoon for a break at the resort, and then head back around sunset. This is what I do to avoid the hot sun (melanoma). But I don't have a problem with heat and humidity, and boy is it brutal in July and August!

 

[larsonhope]

Thanks a bunch for the replies. My son just got out of the hospital (was in for 2 weeks) and this trip came to fruition due to a conference my husband has to attend in the area - and the fact that Disney is offering a special for the military. Otherwise - we'd never be able to afford it!

He has other health issues that are 'yet diagnosed' as his most recent hospital stay landed him in surgery for biopsies of growths they found.

We are going in with the 'we will make the most of what we can' - and he is SO excited - and I just pray we are 'health ok' during those 4 days!!!

We were told (maybe someone here can confirm) that even at the disney discount motels that refrigerators are available for the room if you need them for medications?

 

[clanmcculloch]

Thanks a bunch for the replies. My son just got out of the hospital (was in for 2 weeks) and this trip came to fruition due to a conference my husband has to attend in the area - and the fact that Disney is offering a special for the military. Otherwise - we'd never be able to afford it!

He has other health issues that are 'yet diagnosed' as his most recent hospital stay landed him in surgery for biopsies of growths they found.

We are going in with the 'we will make the most of what we can' - and he is SO excited - and I just pray we are 'health ok' during those 4 days!!!

We were told (maybe someone here can confirm) that even at the disney discount motels that refrigerators are available for the room if you need them for medications?

Yes, you will get a tiny dorm style fridge for free at a value if you have a medical need for it. Medication requiring refridgeration is a medical need. Put a note on your reservation stating your need for a medical fridge and confirm at checkin that it will be delivered to your room. When your final bill comes, make sure you haven't been charged as we've had it show up on our bill both times we stayed at Pop. They were very good about immediately reversing the charge when we phoned, but if we hadn't checked, we would have paid the $10/day.

With the severity of his health conditions, have you ever considered contacting the Make-a-Wish foundation? A friend at work recently went on a Make-a-Wish trip with his son and they couldn't say enough about it. Going through them might make it easier to go during a time of year where he's less likely to have problems with temperature. It really can get VERY hot in the summer.