Child on DCL with chronic condition

[Mom24Princesses]

I have not seen this posted so far as I have been reading this site. Our youngest daughter has a chronic condition that affects her health occasionally BUT her appearance more frequently. I am concerned about our trip on the Magic.

She has von Willebrand Disease. Sounds terrible. If you know of it, great, BUT for most people who do not, it is similar to hemophilia. A Swedish doctor (Dr. von Willebrand) identified the disorder in the early 1900s. It was given his name and called a disease when it should be a disorder. There are many types of vWD. She is type 2B. She is also factor 8 deficient (a type of true hemophilia) and has a low platelet count. We treat her, as needed,with IV hemophilia medications which we carry but do not administer ourselves (yet).

Is there anyone out there who has had similar situation? We can get letters from her doctors at Egelston (Children’s Healthcare of Atlanta)(AWESOME PLACE) with orders for treatment IF IT BECOMES NECESSARY. She received one treatment in the past year! BUT ABOUT 11 the year before.

Then there is her appearance. She will be 5 in two weeks. She has had a half dozen serious black eyes. Tonight, she has over 20 bruises on her legs, some very ugly. several on other parts of her body. (Anywhere bone lies just beneath the skin, hip bone, shoulder blade, fore arm).

Her activities are not restricted in any way. I don’t want to frighten the counselors. I don’t want to be accused of beating her. Often she cannot tell us where the bruises come from. She will turn 6 the day before we sail.

SO calling any parent out there who has had anything similar to deal with while sailing. Dealing with the clinic etc. Please help me out.

THANKS
Melanie
Mom24princesses

 

[kidzmom3]

I don't have any experience with this, just wanted to make sure it stays near the top so someone can answer. You should also post on the disabilities thread, as I have read some great advice there. Hugs to your DD, I am sure everything will be fine on your cruise.

 

[zeldacruiser]

It sounds like your daughter probably not need any special care during the cruise but just some understanding by cast members who might otherwise assume foul play. If you can't get answers in advance, I would take along as much documentation as possible of her condition, perhaps including a letter from her physician specifically addressing the fact that her activities should not be restricted in the clubs. Then you could speak privately once on board to the club counselor and to the ship's physician. The health center is open from 9:30 to 11 and 4:30 to 7 each day, but medical services are always available for emergencies. Another thought - if you cannot make headway in advance, perhaps your physician could call DCL and have better luck getting answers.

 

[anlashokna]

I would contact DCL on this directly. If they know in advance I'm sure you won't have any problems with the medical facility should treatments be needed plus it gives them a heads up. Sounds like with any disorder/disease or condition they are willing to go out of there way to help. I myself have to grab a CM to check my room to make sure there are no musky/smoky smells (triggers) before I enter. Otherwise I'm likely to have a nasty asthma attack if exposed. They had no problem with doing this little thing for me and it save a potentially nasty way to start off a cruise.

I can easily see where the concern would be. Others seeing a child with bruising might question the bruising. I may have years ago but have seen programs about either this particular disorder or something similiar where children bruise at the slightest touch or can break bones. If she needs any special looking after so she doesn't injure herself more than what would be normal (not knowing a whole lot about how easily or severily she can be hurt) then DCL definately should be contacted prior to sailing. They'll do anything they can to assure she has a normal, fun and safe trip

 

[mommasita]

Sorry that I have no right answer for you. I want to add that DCL goes out of their way to help with ANY problem, certainly this one would not be any different. I agree with the previous posters, that calling directly to DCL is your best alternative.

From a mother to another: THis is a cruise your family will all love, including your dd.

From a mother who has a child born with an irreversable birth defect, I applaud you for thinking of going, my son is begging to go again (his third). I will also add your family to my prayers tonight, because I know, there are never enough prayers to be had...

 

[budwmn]

Mom24Princesses -

I too have von Willebrand's and totally understand your concern. My case is not quite as severe as your daughter's and has improved slightly with age (I'm 36). However, I bruise easily and have been questioned about it often (people have thought my husband was beating me). I would definitely bring a note from your doctor explaining the condition, just in case.

The medical center staff on board is very good. My son had a bad stomach virus on one of our cruises and they gave him IV fluids. The nurse had trouble getting a good stick because he was so dehyrated, but the doctor got it on the first try. I would feel very comfortable about going as long as you bring your own medications. If you call DCL, they can get in touch with the doctors on board to confirm whether or not they'll be able to provide treatment. I don't think it will be a problem, but check to be sure.

One side note: my parents did restrict my physical activity (especially regarding contact sports -- my mom was terrified when I started shaving my legs!). When I was diagnosed in the late 1970's, treatment consisted of receiving plasma or cryopercipitate. Just to get a tooth pulled, I had to be in the hospital for 5 days of cryo. It's so much better now. Kudos to you for not letting fear get the better of you. I wish you and your daughter the best of luck. Have a wonderful cruise!

 

[Disney Fans]

I just wanted to say that I wish you and your family well wishes and hope you all have a wonderful and safe Disney Cruise

 

[txaggie94gigem]

make sure you get trip insurance...most waive preexisting conditions if you purchase the plan within 14-21 days of your initial payment and the trip to the clinic could be pricey...i have been told that your medical insurance won't work on the ship and internationally...bring lots of documentation inc the treatment info...i am a nurse and i would be VERY hesistant to administer anything just because a parent told me to

 

[Talking Hands]

You will need to fill out a medical form which your travel agent or DCL can send to you by fax or email. Have your daughter's doctor fill it out and fax it back to DCL. I would also carry a copy from your dactor of her needs, meds needed etc. You will have a great time.

 

[CM_Mom]

As others have said...TALK TO THE CMs in the Club. Explain what, if any, restrictions they should use and show them the documentation from your doctor. They're great to work with but can help your DD have a more MAGICal time if they're informed.

Just to make you feel better, in addition to sending the documentation to DCL in advance, you may want to stop by the medical center when you get on the ship to meet the staff. Then you'll know where it is and see a familiar face if you need their help later.

Have a MAGICal time. How great that you're not letting this spoil great vacations for your family.

 

[logan1_2000]

Like another reply, want to keep this up near the top so folks will see it and can respond. Every child deserves to be happy, and DCL is a wonderful place to do so. I hope you are able to provide a wonderful time to your child and that she is able to enjoy it and just be a happy kid and meet a princess or two.

 

[budwmn]

bump