Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi Emma Tips on Disny 1- previous message very good idea, but also do the same for everyone else, fill bottles with water for each of you and freeze then as it melts and you drink it, fill it up again from the water fountains around the park (drinks exensive and the water from the fountains tastes better chilled) 2- plan - its like a military operation, plan what your going on and a route, there is an awful lot of walking (wear two pair of socks and good walking shoes, and take some blister plasters called Compeed) 3- I don't know if heat effects , it did my daughter so we used one of the park wheelchairs (it does cost but worth it) and we attached one of those parasol things you can get for pushchairs. 4 - we also cheated and took rain macs for the water rides and just in case. Also for water rides take a spare pair of knickers as the outer cloths dry but the knickers don't. 5 - Buy loads of shorts and t-shirts from one of those cheap shops so it doesn't matter what happens to them and if you buy too much, its not as upsetting leaving them behind. If I think of anymore I'll let you know, othewise have fun (mum of le age 16 MCT diet 2004) > Hi everyone, > I,m sorry I've disappeared for months. You were all so helpful when > I started the diet last October. It's been 7 months since starting > the diet. We almost quit last month because continued to have > generalized convulsive seizures, but suddenly on March 6th he had his > last one (knock on wood). He still has myoclonics about 3 times a > day. Sometimes they are very strong and he has a hard time keeping > his balance. They got stronger after we lowered his phenobarb dose > which we had to do because of behavior side affect. Anyway, we had > appts this month for surgical evaluation, but cancelled because we > hadn't seen a " bad " seizure in a record long time :-)We're " going > with it " a little longer. > > I'm posting because we're headed to Disney for a week. I read on a > site that they don't allow coolers even for special diets. how the > heck do I feed him?? > > Has anyone been to Disney on the diet? We will be staying at a villa > that has a full kitchen so I can prepare his meals. i also heard that > you can have chefs prepare a meal for him at a restaurant ahead of > time. has anyone done this?? > > We are very excited about the trip. It's a granted wish from Make-a- > Wish Foundation. loves Mickey. I'm nervous :-/ , but we all > need this. He has 2 brothers that are also affected by all this. Last > year was a particular difficult year with . 6 years of dealing > with this #@! and I still get sooooo down sometimes. Well enough > about that.. you all have your own problems . I guess I just needed > to vent a bit. > > Please send me tips on Disney and the diet. Thanks! > Emma > mom to 6-yr-old (infantile spasms at 3 months, -dev delayed and > intractible seizures now)beautiful boy > www.geocities.com/thecats5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi Emma Tips on Disny 1- previous message very good idea, but also do the same for everyone else, fill bottles with water for each of you and freeze then as it melts and you drink it, fill it up again from the water fountains around the park (drinks exensive and the water from the fountains tastes better chilled) 2- plan - its like a military operation, plan what your going on and a route, there is an awful lot of walking (wear two pair of socks and good walking shoes, and take some blister plasters called Compeed) 3- I don't know if heat effects , it did my daughter so we used one of the park wheelchairs (it does cost but worth it) and we attached one of those parasol things you can get for pushchairs. 4 - we also cheated and took rain macs for the water rides and just in case. Also for water rides take a spare pair of knickers as the outer cloths dry but the knickers don't. 5 - Buy loads of shorts and t-shirts from one of those cheap shops so it doesn't matter what happens to them and if you buy too much, its not as upsetting leaving them behind. If I think of anymore I'll let you know, othewise have fun (mum of le age 16 MCT diet 2004) > Hi everyone, > I,m sorry I've disappeared for months. You were all so helpful when > I started the diet last October. It's been 7 months since starting > the diet. We almost quit last month because continued to have > generalized convulsive seizures, but suddenly on March 6th he had his > last one (knock on wood). He still has myoclonics about 3 times a > day. Sometimes they are very strong and he has a hard time keeping > his balance. They got stronger after we lowered his phenobarb dose > which we had to do because of behavior side affect. Anyway, we had > appts this month for surgical evaluation, but cancelled because we > hadn't seen a " bad " seizure in a record long time :-)We're " going > with it " a little longer. > > I'm posting because we're headed to Disney for a week. I read on a > site that they don't allow coolers even for special diets. how the > heck do I feed him?? > > Has anyone been to Disney on the diet? We will be staying at a villa > that has a full kitchen so I can prepare his meals. i also heard that > you can have chefs prepare a meal for him at a restaurant ahead of > time. has anyone done this?? > > We are very excited about the trip. It's a granted wish from Make-a- > Wish Foundation. loves Mickey. I'm nervous :-/ , but we all > need this. He has 2 brothers that are also affected by all this. Last > year was a particular difficult year with . 6 years of dealing > with this #@! and I still get sooooo down sometimes. Well enough > about that.. you all have your own problems . I guess I just needed > to vent a bit. > > Please send me tips on Disney and the diet. Thanks! > Emma > mom to 6-yr-old (infantile spasms at 3 months, -dev delayed and > intractible seizures now)beautiful boy > www.geocities.com/thecats5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi Emma, We had no trouble either. We ate at Cinderella's castle and when I began explaining what I wanted, they brought the chef out. He was SO nice and prepared exactly what I asked him to. Lynden gave him a huge hug after dinner and he said that made his whole day. Kathy is correct. You can bring in your own stuff. Anyone with a bag has to have it searched but it goes quickly. Have a terrific time. Ann Disney trip on keto diet Hi everyone, I,m sorry I've disappeared for months. You were all so helpful when I started the diet last October. It's been 7 months since starting the diet. We almost quit last month because continued to have generalized convulsive seizures, but suddenly on March 6th he had his last one (knock on wood). He still has myoclonics about 3 times a day. Sometimes they are very strong and he has a hard time keeping his balance. They got stronger after we lowered his phenobarb dose which we had to do because of behavior side affect. Anyway, we had appts this month for surgical evaluation, but cancelled because we hadn't seen a " bad " seizure in a record long time :-)We're " going with it " a little longer. I'm posting because we're headed to Disney for a week. I read on a site that they don't allow coolers even for special diets. how the heck do I feed him?? Has anyone been to Disney on the diet? We will be staying at a villa that has a full kitchen so I can prepare his meals. i also heard that you can have chefs prepare a meal for him at a restaurant ahead of time. has anyone done this?? We are very excited about the trip. It's a granted wish from Make-a- Wish Foundation. loves Mickey. I'm nervous :-/ , but we all need this. He has 2 brothers that are also affected by all this. Last year was a particular difficult year with . 6 years of dealing with this #@! and I still get sooooo down sometimes. Well enough about that.. you all have your own problems . I guess I just needed to vent a bit. Please send me tips on Disney and the diet. Thanks! Emma mom to 6-yr-old (infantile spasms at 3 months, -dev delayed and intractible seizures now)beautiful boy www.geocities.com/thecats5 " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi Emma, We had no trouble either. We ate at Cinderella's castle and when I began explaining what I wanted, they brought the chef out. He was SO nice and prepared exactly what I asked him to. Lynden gave him a huge hug after dinner and he said that made his whole day. Kathy is correct. You can bring in your own stuff. Anyone with a bag has to have it searched but it goes quickly. Have a terrific time. Ann Disney trip on keto diet Hi everyone, I,m sorry I've disappeared for months. You were all so helpful when I started the diet last October. It's been 7 months since starting the diet. We almost quit last month because continued to have generalized convulsive seizures, but suddenly on March 6th he had his last one (knock on wood). He still has myoclonics about 3 times a day. Sometimes they are very strong and he has a hard time keeping his balance. They got stronger after we lowered his phenobarb dose which we had to do because of behavior side affect. Anyway, we had appts this month for surgical evaluation, but cancelled because we hadn't seen a " bad " seizure in a record long time :-)We're " going with it " a little longer. I'm posting because we're headed to Disney for a week. I read on a site that they don't allow coolers even for special diets. how the heck do I feed him?? Has anyone been to Disney on the diet? We will be staying at a villa that has a full kitchen so I can prepare his meals. i also heard that you can have chefs prepare a meal for him at a restaurant ahead of time. has anyone done this?? We are very excited about the trip. It's a granted wish from Make-a- Wish Foundation. loves Mickey. I'm nervous :-/ , but we all need this. He has 2 brothers that are also affected by all this. Last year was a particular difficult year with . 6 years of dealing with this #@! and I still get sooooo down sometimes. Well enough about that.. you all have your own problems . I guess I just needed to vent a bit. Please send me tips on Disney and the diet. Thanks! Emma mom to 6-yr-old (infantile spasms at 3 months, -dev delayed and intractible seizures now)beautiful boy www.geocities.com/thecats5 " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 For the person asking about the trip to Disney, I asked a friend whose husband works there, this was her response Hi Moe, A couple of things. 1st) if she has a small colapsable type cooler, one that is about the size of a diaper bag she can bring it in the park. I have done this many many times. They have lockers inside she could leave it or carry along with her. Also, outside the front entrance they have locker especially for coolers with food in them. she could always store it there. THey have a picnic area outside the park. When we have gone in the past. I have made all the meals for the day. And I would just put them in our backpack, since the meals are so small and I would just put them in a plastic grocery bag and several blue ice things to keep them cold. ANd that was it.. ANd I have never had a problem. Recently we went to Disneyland and had no money to spend on food. ANd I brought all of our meals for our entire family ( 7 people) and I left some in a locker outside..too heavy to carry and the rest I had in my pack back. Sandwiches, chips, capri suns and JR's meals, they checked my bag upon entry and let us in with no questions asked. She should have no problem what so ever taking her food through. Quote Link to comment Share on other sites More sharing options...
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