Disney cruise info please!

[HQsMom]

Hello,
I have been searching the boards for information but can't seem to find exactly what I'm looking for.
We are possibly going on a Disney cruise next month thanks to the wonderful organization, Make-a-Wish. My daughter is three years old and has a rare seizure disorder that has left her severely developmentally delayed. She has hundreds of seizures everyday that are not controlled by the medication she takes, she cannot walk, talk, hold up her head, is g-tube fed, and not potty trained. I've been reading all I can about the cruise and it sounds wonderful because I know she will enjoy being around the other people and characters. She loves lights and music and being in the water. I'm just not sure how well they will be able to accomodate a kid like ours- specifically, will she be able to participate in any of the children's programming? I'm really worried about travelling with her too. Will we need to bring a car seat with us for transfers from the airport? For that matter, will we need a car seat on the airplane? She sits in one in our vehicle but we have to recline the seat back a little bit to keep her head from slumping forward- I don't know if this will work on an airplane so should we even bother bringing it with us?
Sorry this is so long but I have sooo many questions! Would love to hear from someone that's been through this if there is anyone out there!

Thanks for your help!

 

[roseprincess]

Hi HQsMom,
First of all, welcome to the DISabilities board!

Congrats also about your dd going for her MAW(Make-A-Wish) trip!
As of a Disney cruise and of accomodations for your dd's trip, I would suggest to ask your Wish granter or Wish Coordinator, whoever is helping from MAW setting up the Wish process for your dd. I don't know where you live or which MAW office your dd's wish trip is from, but a Wish granter or Wish volunteer is supposed to do a first visit at your home for your dd and your family. Any questions about accomodations for your dd should be brought up then. I would think the Wish granter would give you her/his phone number, email address so you can ask questions. That's what they are there for, to help answer any questions for your dd's trip, besides helping plan the wish.

Also, I would talk to your dd's doctor, either specialist or pediatrician, about accomodations on the plane, car seat,etc. Whichever doctor approved your dd's wish is the doc you should talk to about certain accomodations she may need. You also should see if your dd's doctor will approve for her to go out of the country, depending on her condition and her age. I'm guessing the Disney cruise is the one going to Castaway Cay?

Also, I think I read somewhere( don't remember where) that the wish child has to be at least 5 yrs. old to travel out of the country? You may need to verify this with your local MAW office. I don't know if each local office is different on this policy or if that is a standard policy for all the MAW offices.

Also,you might need to take in consideration the health of you dd in general. IMO personally, if I had a dd that had hundreds of seizures/day and the meds didn't help ( like what you posted), I would not be going on a cruise, even if it was a Disney cruise. To me, that would be very scary if something extremely major happened to her while in open water on the cruise. You won't be able to get her to a hospital right away if something should happen( unless you are at that Castaway Cay Island). Tho, I don't know what kind of hosp. and medical care they have on that island. Just something to think about for the health and safety of your dd.

Keep us posted what MAW says and your dd's doctor says for approval for the Disney cruise and accomodations. I know most of the MAW trips have been to WDW. There may be some other families that have posted on these boards that have combined the land/ sea WDW trips. I don't know if the wish kids are older or your dd's age.


Roseprincess

 

[2morrow]

If you get the Travel Channel They are airing a special on the disney cruise line
March 16 @ 10:00am
March 18 @ 9:00 pm
March 19 @ 12:00 am

 

[4fosterkids]

Congratulations on your MAW trip. That is very exciting.
My son also has a seizure disorder as well as a metabolic disorder. He is 12 and not as severely affected by his conditions, but has significant delays with speech and developement. Depending on seizure activity he can be severely impaired for any length of time. We are going on the Magic this summer for the West Coast cruise. A good friend of mine went on the Magic last December with her family of 9, which includes quads, 1 of which has a seizure disorder, CP and wheelchair bound. She talked to the ship doctor ahead of time as well as the ships cook to set up his meds, emergency protocal and food restrictions. She said they were great about everything. She had no problems on the cruise luckily, had a wonderful time, but she highly recommended contacting them ahead of time to discuss any special needs and make a plan, just in case.
Hope that helps. I plan on doing this too.

 

[dclfun]

To join in the children's programming a child must be able to participate fairly indpendently. The counsellors there wouldn't be able to be responsible for any medical needs and it sounds as though she is medically fragile. You could probably go into the clubs with her though- I know they have a "family time" also where parents or siblings can accompany children in the Club area. There is one "ear" of Mickey's pool that is for non potty trained children in swim diapers so you could probably assist her to splash and play in the water there as well as on Castaway Cay. As other posters suggested, it's a good idea to speak with your MAW coordinator who can provide more details and to her physician who can advise you best. Good luck with your plans. Kathy

 

[tiggger1]

not sure if the Disney cruise is like this but I heard on another board that you cannot use the pools on the ship unless you are trained and they wont allow swim diapers. . A bunch of people paid for their cruises and in there paperwork they recieved the week bofore they left its ted that.

also found this

A: Yes. The United States Public Health Service requires that only children who are toilet-trained be permitted to enter swimming pools and spas on board cruise ships.Young children, who are not toilet-trained, are welcome to enjoy the fountain play area near the Mickey Pool that has been designed exclusively for the enjoyment of children wearing swim diapers.

 

[SueM in MN]

not sure if the Disney cruise is like this but I heard on another board that you cannot use the pools on the ship unless you are trained and they wont allow swim diapers. . A bunch of people paid for their cruises and in there paperwork they recieved the week bofore they left its ted that.

also found this

A: Yes. The United States Public Health Service requires that only children who are toilet-trained be permitted to enter swimming pools and spas on board cruise ships.Young children, who are not toilet-trained, are welcome to enjoy the fountain play area near the Mickey Pool that has been designed exclusively for the enjoyment of children wearing swim diapers.

THat is because a bunch of ships had a very bad time with Norwalk virus the last few years. One of the main ways they figured out it was being transmitted on the ships was in the pools. Although the swim diapers will contain the "solids", they don't really contain more liquid stool very well at all.

 

[HQsMom]

Thank you everyone for your advice. We are going to try out the cruise and hope that everything goes well! Maybe when we return I will have tips and advice to share for other families in our situation.

 

[4fosterkids]

Thank you everyone for your advice. We are going to try out the cruise and hope that everything goes well! Maybe when we return I will have tips and advice to share for other families in our situation.

I would love to hear any information, ideas or suggestions you come up with on your trip. We cruise in July so it will give me time to adjust plans if we need to.
Thank you
Jill

 

[Jennay]

HQ's Mom... does your child have Angelman Syndrome?

Jen

 

[HQsMom]

Hi Jen,

No- my daughter does not have Angelman's Syndrome. Her condition is called Ohtahara Syndrome.

By the way...we cruised aboard the Disney Magic back in April thanks to Make a Wish and we had a FABULOUS time. We can't wait to do it again...someday!

Amy

 

[Jennay]

Amy,

Thanks for your reply. My daughter has Angelman Syndrome that's why I asked. She too has about 100 seizures (on a good day), cannot talk, walk, and is not potty trained. She just turned 6 last week. A lot of the symptom's you described about your daughter are VERY similar to most children with Angelman. I would like to share your daughter's syndrome with an Angelman Support group I'm a part of. I hope that it may help some parents on the board whose children continue to go undiagnosed, but share similar symptoms. Thanks for the information. I'm glad you all were able to go on a disney cruise through MAW. Our Disney cruise is in September this year. We can't wait!

Jen