OneMoreTry
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- Joined
- May 9, 2003
- Messages
- 2,632
I am posting this in case someone else is crazy enough to consider taking a young child on this diet to WDW.
It is difficult, but then all of life is difficult when a family member is on the ketogenic diet. You've just got to keep on living in spite of it.
We left home on the 700 mile drive with 2 and 1/2 days worth of meals. Our daughter gets 4 meals of 230 calories and a 3.8 ratio daily. We left with three liquid meals and seven solid meals mostly with mayo for fat because it's more palatable cold. I should not that our daughter will eat lots of oil cold or hot so that's one typical difficulty we don't have to deal with.
In addition to these 10 meals we brought the accompanying cream already mixed with B6 and biotin which our daughter takes daily and CalMag supplement in the "Orange Julius" liquid meals which we use for breakfast every day. All were packed in a medium-size soft side cooler with lots of Blue Ice packs and ice in zip-lock bags. We keep the calmag in the cooler and the other flavorings and liquid sweeteners in the pouches in the side of the cooler along with needed plastic spoons and straws. This keeps all the food plenty cold for the trip -- I refill the zip lock bags with ice at the motel on the way down. We have a separate smaller cooler for meals and drinks we are going to use before our next stop during the drive which we keep on the floor in front of her car seat, and the larger cooler is packed in the back of our suburban that way we don't have to reach into the back for meals while we're driving.
We feed her at about 830, noon, 4 and 7 daily. (She's almost 4 and has significant developmental delay. She can say several words, etc.) Sometimes we feed her while we're eating fast food in the car. Otherwise we feed her before we eat and give her ice chips while we're eating which keeps her from screaming. Usually my older kids will feed her but if my wife or I are sitting in the bck of our Suburban we feed her.
I should note that we don't restrict her fluids and we don't believe it would make a difference but I won't get into that debate. I should also note that although this diet has not stopped all her seizures, she has had an unbelievably good response with at least 90% reduction.
We use small disposable plastic containers for her meals. I'm not sure the brand name but they sell them at walmart. The larger cups come with sippy lids, but we store them with the solid lids to prevent spillage.
We spend the night around St Aug and try to get to DW around noon. My wife does the shopping in the afternoon. Publix has the cream with NO CARBS and 50 out of 50 calories are fat. Winn Dixie did NOT have this cream so go to Publix. We stay in a "home away from home" condo at disney and I don't kinow how anyone could do a ketogenic diet in a hotel room unless the trip was short and you were bringing all the meals from home. These are GREAT facilities and are located at Old Key West, Beach Club Villas, Boardwalk Villas and Wilderness Lodsge Villas. Saratoga springs will open with villas soon. (We have five kids so need 2 BR anyway. I don't think the studios have full kitchen facilities required for making meals.) We bring a small O'Haus scale (it cost us about $90 and is battery powered and uses AAA batteries). I don't know the model number but will post it if anyone is interested.
The first day my wife makes all the meals for the trip except maybe the Orange Juliuses, which we usually use for breakfast. We use the same storage containers from walmart and keep them in small plastic baskets in the fridge.
We prepare each days cream that morning.
We only do 2 park days per week and one water park day. It would be too hard to do more.
When we go to a park we give her breakfast before we go (Orange Julius) and bring 2 meals to the park. She has never needed the second meal because she always goes back for a nap at about one pm, but we bring it anyway in case for some reason we decide not to go back. We use a small Igloo soft sided cooler that is about 10 inches cubic. with lots of Blue Ice which keeps the food plenty cool. Again we try to use mayo meals because they are more palatable without heating at the parks. They will keep the meals for you at the first aid/clinic station in a small fridge but we find it easier just to carry the meals with us.
We usually don't eat out with her at home but have eaten at numerous restaurants at DW without too many problems. We use ice to keep her happy and if she starts to get out of control my wife or I take her out, but fortunately that hasn't happened too much. We ask the waiter for ice chips, which usually keep her ahppy, but also require lots of diaper changes because she pees alot. Again we feed her before or during our restaurant meal, so we have to time meals and PS's according to her meal schedule.
The character meals worked well because the characters distracted her from the fact we were eating and she wasn't. We did chef mickeys and it worked out well.
We don't feel guilty eating goodies in front of her any more. she doesn't remember what carbs taste like -- she's been on the diet for a year-- and the diet helps her SO MUCH there's no doubt she needs to be on it. Without the diet she wouldn't know where she was. On it she can actually enjoy the rides, etc. Some days we only see a couple seizures.
I should note that she did well on the first couple days. After that she had increasingly more seizures (all myoclonic) which were probably due to STRESS, although they could have been due to unknown dietary factors. She did get some crumbs off the floor one day because our condo didn't have a vacuum like it was supposed to. We usually vacuum the kitchen twice daily at home to prevent that.
Our daughter has pretty much pure myoclonic epilepsy. She does not have other types of seizures, but her seizure activity pre-diet was so constant that she couldn't enter our world. On the diet she is a totally different person, but still has some seizures. She still has several drops daily, and on the last day of our stay she split her forehead because we had become complacent (she was doint so well) and we didn't have her helmet on her. It didn't need stitches but we used steristrips which I bought at the walgreens which is at the intersection of international blvd and 192 across from Publix.
YOU CAN DO DW on the KETOGENIC DIET. It's not easy, but then all life is difficult with a child on this diet. Get a room with a full kitchen. Bring lots of Blue Ice and portable scale. Plan lots of down time and plenty of time up front to prepare the meals. Both parents must be committed to make it work at DW -- acutally the whole family must be committed. Bring one carton of cream from home IN CASE you can't find the right kind the first day, but we found it at PUBLIX.
Cast members and restaurants at DW HAVE NO CLUE about this diet. They cannot help you at all. You've got to bring all your meals with you to the parks. Don't try to explain. Just ask for ice chips.
Please post if you have any questions or email me at neildw@charter.net. I would also be interested if you have any other suggestions or comments.
If you don't know someone on this diet I'm sure this post will be meaningless. I'm hoping it may help someone someday who wants to see Disney in spite of the ketogenic diet and is brave enough to face the challenges.
It is difficult, but then all of life is difficult when a family member is on the ketogenic diet. You've just got to keep on living in spite of it.
We left home on the 700 mile drive with 2 and 1/2 days worth of meals. Our daughter gets 4 meals of 230 calories and a 3.8 ratio daily. We left with three liquid meals and seven solid meals mostly with mayo for fat because it's more palatable cold. I should not that our daughter will eat lots of oil cold or hot so that's one typical difficulty we don't have to deal with.
In addition to these 10 meals we brought the accompanying cream already mixed with B6 and biotin which our daughter takes daily and CalMag supplement in the "Orange Julius" liquid meals which we use for breakfast every day. All were packed in a medium-size soft side cooler with lots of Blue Ice packs and ice in zip-lock bags. We keep the calmag in the cooler and the other flavorings and liquid sweeteners in the pouches in the side of the cooler along with needed plastic spoons and straws. This keeps all the food plenty cold for the trip -- I refill the zip lock bags with ice at the motel on the way down. We have a separate smaller cooler for meals and drinks we are going to use before our next stop during the drive which we keep on the floor in front of her car seat, and the larger cooler is packed in the back of our suburban that way we don't have to reach into the back for meals while we're driving.
We feed her at about 830, noon, 4 and 7 daily. (She's almost 4 and has significant developmental delay. She can say several words, etc.) Sometimes we feed her while we're eating fast food in the car. Otherwise we feed her before we eat and give her ice chips while we're eating which keeps her from screaming. Usually my older kids will feed her but if my wife or I are sitting in the bck of our Suburban we feed her.
I should note that we don't restrict her fluids and we don't believe it would make a difference but I won't get into that debate. I should also note that although this diet has not stopped all her seizures, she has had an unbelievably good response with at least 90% reduction.
We use small disposable plastic containers for her meals. I'm not sure the brand name but they sell them at walmart. The larger cups come with sippy lids, but we store them with the solid lids to prevent spillage.
We spend the night around St Aug and try to get to DW around noon. My wife does the shopping in the afternoon. Publix has the cream with NO CARBS and 50 out of 50 calories are fat. Winn Dixie did NOT have this cream so go to Publix. We stay in a "home away from home" condo at disney and I don't kinow how anyone could do a ketogenic diet in a hotel room unless the trip was short and you were bringing all the meals from home. These are GREAT facilities and are located at Old Key West, Beach Club Villas, Boardwalk Villas and Wilderness Lodsge Villas. Saratoga springs will open with villas soon. (We have five kids so need 2 BR anyway. I don't think the studios have full kitchen facilities required for making meals.) We bring a small O'Haus scale (it cost us about $90 and is battery powered and uses AAA batteries). I don't know the model number but will post it if anyone is interested.
The first day my wife makes all the meals for the trip except maybe the Orange Juliuses, which we usually use for breakfast. We use the same storage containers from walmart and keep them in small plastic baskets in the fridge.
We prepare each days cream that morning.
We only do 2 park days per week and one water park day. It would be too hard to do more.
When we go to a park we give her breakfast before we go (Orange Julius) and bring 2 meals to the park. She has never needed the second meal because she always goes back for a nap at about one pm, but we bring it anyway in case for some reason we decide not to go back. We use a small Igloo soft sided cooler that is about 10 inches cubic. with lots of Blue Ice which keeps the food plenty cool. Again we try to use mayo meals because they are more palatable without heating at the parks. They will keep the meals for you at the first aid/clinic station in a small fridge but we find it easier just to carry the meals with us.
We usually don't eat out with her at home but have eaten at numerous restaurants at DW without too many problems. We use ice to keep her happy and if she starts to get out of control my wife or I take her out, but fortunately that hasn't happened too much. We ask the waiter for ice chips, which usually keep her ahppy, but also require lots of diaper changes because she pees alot. Again we feed her before or during our restaurant meal, so we have to time meals and PS's according to her meal schedule.
The character meals worked well because the characters distracted her from the fact we were eating and she wasn't. We did chef mickeys and it worked out well.
We don't feel guilty eating goodies in front of her any more. she doesn't remember what carbs taste like -- she's been on the diet for a year-- and the diet helps her SO MUCH there's no doubt she needs to be on it. Without the diet she wouldn't know where she was. On it she can actually enjoy the rides, etc. Some days we only see a couple seizures.
I should note that she did well on the first couple days. After that she had increasingly more seizures (all myoclonic) which were probably due to STRESS, although they could have been due to unknown dietary factors. She did get some crumbs off the floor one day because our condo didn't have a vacuum like it was supposed to. We usually vacuum the kitchen twice daily at home to prevent that.
Our daughter has pretty much pure myoclonic epilepsy. She does not have other types of seizures, but her seizure activity pre-diet was so constant that she couldn't enter our world. On the diet she is a totally different person, but still has some seizures. She still has several drops daily, and on the last day of our stay she split her forehead because we had become complacent (she was doint so well) and we didn't have her helmet on her. It didn't need stitches but we used steristrips which I bought at the walgreens which is at the intersection of international blvd and 192 across from Publix.
YOU CAN DO DW on the KETOGENIC DIET. It's not easy, but then all life is difficult with a child on this diet. Get a room with a full kitchen. Bring lots of Blue Ice and portable scale. Plan lots of down time and plenty of time up front to prepare the meals. Both parents must be committed to make it work at DW -- acutally the whole family must be committed. Bring one carton of cream from home IN CASE you can't find the right kind the first day, but we found it at PUBLIX.
Cast members and restaurants at DW HAVE NO CLUE about this diet. They cannot help you at all. You've got to bring all your meals with you to the parks. Don't try to explain. Just ask for ice chips.
Please post if you have any questions or email me at neildw@charter.net. I would also be interested if you have any other suggestions or comments.
If you don't know someone on this diet I'm sure this post will be meaningless. I'm hoping it may help someone someday who wants to see Disney in spite of the ketogenic diet and is brave enough to face the challenges.
