Hello, introduction!

[Libbyt]

My name is Libby, and I'm the parent of a 19 yr. old with disabilities. Sally has had a variety of development delays and issues all her life, and just about 1 1/2 yrs. ago was diagnosed with a very rare genetic metabolic disorder called 3-methylglutaconic aciduria (3MGA). We actually found this out by accident while looking for the cause of some strange "passing out" episodes she was (and still is) having. In the next few weeks, she will be undergoing some new tests at Duke that involve doing a tilt table test while connected to EEG, heart monitors, arterial line/IV line, and several other things that my confused brain can't remember!! Also sending blood and tissue samples to a group of doctors in Spain who are currently doing research on the genetic disorder.

Sally and I are going to WDW this August (free dining -yay!) Normally I would never choose this time of year to go, but it's the only time that suits her work schedule (she works in an afterschool program with younger kids with disabilities.) Her cardiologist has given us a GAC letter, which will help her a lot. We're doing this as a "girls' trip" because my husband and son are going to hike Philmont with their Boy Scout troup earlier in the summer. I've been working on planning our ADR's to suit her dietary preferences - should be an interesting week!

I'd love to hear from anyone who has visited WDW with metabolic issues - any survival tips?? Or just from anyone who has an older teen with disabilities or experience with the type of testing we're preparing for.

Thanks - looking forward to getting to know everyone here!

Libby

 

[mechurchlady]

Welcome to the board LibbyT and big hugs to a great mom and happy mother's day.

I see that there are several types of 3-methylglutaconic aciduria (3MGA).
http://www.barthsyndrome.org/english/View.asp?x=1440
http://www.ourboogieman.com/diagnosis.html
I will use that since I am going in circles on this.

As for the cardiomyopathy you need to talk to her doctor on what if any limitations she has and what things to avoid. Ride limitations ususually is physical forces or extreme stress. A list of heart warning related rides was posted by Sue recently.

For the dystonia, muscle weakness, cardiac related issues, and motorskills I would recommend an ECV. This would help her heart and help her avoid stress. She can zoom ahead to a shady spot and rest while in line.

For hydration there are drinking fountains and all counter and table service restaurants offer cups of ice and/or water. Some people use the camelbak to stay hydrated. It is a back pack or other resevoir that holds water and usually can be carried on the back of a wheelchair or ECV.
http://www.camelbak.com/index.cfm

You are allowed to carry your own food into the parks. Bring or buy locally things she will eat that will keep her going until dinner time. Even if there is not line and you are served immediately at a counter service restaurant you are talking about 10 minutes to get the meal and sit down to eat the meal. It can be a lot longer if it is busy or table service. Diabetics have to plan for those delays. Like I picked up food for mom today and started at 5 PM for her 6 PM dinner and made it home with 5 minutes to spare.

To avoid stress and heat and other problems do a lot of reseach online and in books about WDW. If she is getting hot then you will know where to go cool off. If a ride is down then you will know of another thing to do. Magic Mornings and Evenings as well as arriving at parks at opening helps get a lot done with the fewest crowds. Fastpasses also help for mainstreamed lines.

For the GAC she would not need it if she used a wheelchair or ECV. She could get a GAC however if she was vision, sun or hearing limited. No note is needed for any Disney services including the GAC.

Check the FAQs for this board for lots of links to traveling info, bathrooms, busses and so much more.

hugs
Laurie

 

[bookwormde]

Welcome,

For the developmental delays it really depend on the nature and if there are any manifestations which they generate, but in general WDW is such a magical place that the impact of these delays seems to have less impact.

For the “passing out” issue it really comes down to a matter of safety. If they occur from the standing position and are rapid enough as to not allow your daughter to “get settled” before “going out” then I agree a mobility device of some type is probably a good idea. Also if they last for more than a few second then being able to manage her on many of the rides until she “comes back” might pose a safety issue. A lot depend on the frequency, nature and if you have been able to identify and triggers that can be avoided for her situation.

I think the tips that most of us use who have children with challenges would apply, manage fatigue and stress, it’s the summer so hydrations and general overheating is a big concern. A lot of us find getting to the parks early and returning to the resort after lunch to explore, swim and nap helps a lot (if you are staying on site this is very practical, if offsite it more difficult). Then we come back in the evenings when it is cooler.

If your daughter has special dietary preferences, I have found that most of the restaurants are very accommodating so do not be shy about asking, the worst they can say is no.

I do not know anything about 3MGA but I can see the Laurie has found a few links for you and using these and continuing your own research is always important so you and your daughter can make informed choices.

Have a great time

bookwormde

 

[pudge the fish]

to the boards

I agree with PP's -August is HOT... up early, lots to drink and take 10- 15 here and there to relax. take a break mid day as between 1 and 4 is so hot.
misty fans are my friends as are water bottles and wonderful CM's who will give me ice to add to water bottles and back to parks when it is cooler

Floppy hats and sunscreen and itsakadoozie bars before they melt

as to the GAC you have to say what her needs are- a letter from a doctor probably won't even be read-they normally aren't helpful as CM"s aren't medical people and have no idea what certain conditions are.
like a need would be can't walk up stairs, needs to be up front as person has vision issues.

if you have diet needs note them when making ADR's
Have an awesome time

 

[koolaidmoms]

Welcome!

We just got back from WDW a week ago and it was really hot for us Northerners. 90-92 and HUMID!!!! (Is there a sweating smiley face???)

Anyway toward the end we figured out that if we waited until 5:00 pm or so and went out at night to the latest parks that were open it really helped us a great deal. The sun was setting, no fear of sun burn for my fair skinned family, and the tempertures were wonderful. We were at MK until 1:30 am on a Sunday and it was one of the best days we had. By 11:00 pm waits at Splash and BTMRR were 5 and 15 minutes each. Most other rides were walk on.

Have a great time!!!!

Hope this helps some.

 

[Libbyt]

Thanks, everyone, for the greetings and the tips! Since it will just be the two of us on this trip, we are going to do LOTS of planning and research, but very little rigid scheduling.......that way, we'll know what all our options are, what we'd most like to see/do, but we can be flexible in dealing with the heat and our energy levels. That's actually the way we plan most trips and it always works out. We hope to get some new medical guidance over the next few months also, so that may affect our planning, but whatever happens, I know we'll have a great trip!

Anyone else dealing with metabolic disorders, please chime in! Thanks to Laurie for the link to Dillion's website - that was new to me, and I sent an email to get in touch with his mom.

Happy planning!!
Libby

 

[ireland_nicole]

Hi! Don't have anything helpful to add, just wanted to welcome you!