disability contact # @ WDW?

[starwish]

This is my first post here so please forgive any errors. I'm a long time lurker that has gained invaluable knowledge through these forums. We made our first successful family trip to WDW last December. We have 2 children with special needs - 12yo daughter with arthritis and 10yo son with Asperger, Tourette, Sensory Integration and auditory processing disorders. They are great kids.

I am seeking a telephone number or email address for a central health or disability office at WDW. I took my sister to WDW last month to celebrate her 50th birthday (her first trip!) and have had some serious neurological problems since then. One of the possible causes is ciguatera poisoning, with symptoms that started during a meal at Le Cellier. I tried to contact WDW on 11/2 - Guest Relations at Epcot took my contact info for the manager but there has been no response yet. I sent an email to WDW yesterday - no response yet. I am hoping to find out if any other guests/CMs have reported similar symptoms to aid the neurologist in making a diagnosis. I am not trying to create a problem for WDW - I simply want to prevent other people from going through the ER visits, tests and spinal tap that has filled my last 3 weeks. My doctor also would like to get a sample of the food in question.

Thank you for any information you can provide.

 

[SueM in MN]

Welcome.
I'm sorry that your first post is not a happy one, but I'll try to see what I can think of to help you out. In "one of my former lives", I was a Public Health Nurse. I never investigated ciguatera poisoning, but I do have some ideas for you.
First, here's a link to information about an investigation of ciguaterra poisoning reported by the Center for Disease Control. It's from 1991, but I don't think the investigation would have changed much and the symptoms certainly wouldn't have.

Second, I don't know of a phone number or address dealing with health issues, but since this is food related, you could try the Executive Chef's Office at (407) 824-5967. WDW is in Orange County. Here is a link to the Orange County Health Department. I'm pretty sure they would be interested in helping you.

Third, since you were there last month, it is possible that they won't have any of the same fish left. If it was frozen, they might have some form the same batch of fish, depending on how big of lots they buy it in and how much is sold. If it was fresh, I'm quite certain they won't have any left.

Good luck and let us know how it turns out.

 

[starwish]

Thanks Sue. I looked into the CDC reports on ciguatera which leads me to believe this is what I'm dealing with. The Orange County Health Department emailed me yesterday and I expect to hear from them soon. My doctor thinks this may be a reportable disease so I also contacted the Florida Department of Health. I would prefer to handle it through WDW, so I will try the Executive Chef's office. I see the neurologist today and hope to get a diagnosis.

My goal is to make our family trip to WDW in December. Our daughter had a flare last year so we are familiar with doing WDW in a wheelchair. Looks like I may be the rolling family member this year.

 

[starwish]

I saw the neurologists yesterday. They are redoing blood tests for specific Lyme bacteria to rule that out. The other possibilites are saxitoxin (a shellfish neurotoxin) and ciguatera. The expert on ciguatera works at the medical center treating me, so they brought him in yesterday. He seems to be leaning towards the saxitoxin, but said we may never know for sure. He will be doing a nerve function test next month. The difference in recovery is 2 months for saxitoxin vs few months to years for ciguatera. I'm rooting for the saxitoxin!

Sue, thank you for the Executive Chef's number. There is still no word from WDW on the phone call to Epcot and the emails, so I called that number today. Spoke to a very nice lady who is going to find out where they stand on an investigation for me. I asked for information (if possible) on the source of the scallops so I can check it against red tide reports, and if anyone has reported similar symptoms.

I do have some feeling and taste back. They removed all dietary restrictions with the exception of seafood. Tonight I will do an alcohol test. If it's ciguatera, the symptoms will intensify with alcohol consumption, so the neurologist said to try a couple of beers and see what happens. Certainly better than the other tests I've had so far!

 

[SueM in MN]

Now that is an interesting test!
I hate to tell anyone that I hope they have something, but in your case, I hope you have the saxitoxin. I certainly sounds better than some of the other options!
Anyway, good luck and I'm glad someone was helpful for you.