WDW with a Keto Kid

[Mike Bartenhagen]

Has anyone been to WDW with a Keto Kid? If so did it work ok?

Mike

 

[Mike Bartenhagen]

I posted this a few weeks ago with out a response and got to thinking that I assumed people would know what a Keto Kid was and most probably don't.

In August we are talking our son to John Hopkins to start the Ketogenic Diet (therefore a Keto Kid) which is a extremly strict high protein diet that we hope will help control his seizures. The diet requires him to eat specific foods and specific amounts. Everything must be weighed that he eats and drinks and for that reason we will need to bring all of his meals into the parks and restraunts. What will we need to have in order to be able to do this? Will a note from the doctor be good enough? Does anyone see any problems with this?

Mike

 

[wide awake]

Depends on his age. I would not want to be eating yummy thnigs in front of a child that cannot have even a little taste. We researched the Ketogenic diet at one point and while it has proven effective for many children it is extremely limiting. My DS is autistic with no history of seizures so we didn't try it, but were on gluten/casein free for 18 months which is bad enough. DH and I went on it too, and basically you just have to take the focus off food. Eating for fuel. Since your child will not be able to eat in any restaurant you and your wife may just want to grab quick snacks so you don't tempt him. Luckily the Ketogenic diet is not forever.

 

[Mike Bartenhagen]

Broc turned two in January but cognativly he is only about 9 to 12 months. It is going to be difficult but we have been through 7 medications with no success and he is still having 20 to 100 seizures per day so it is our best option. We aren't worried about him wanting to eat what we eat but are wondering if Disney will have a problem with us bringing food into the restaurants and the park.

Why did you research the diet if your son has no seizures?

Mike

 

[Talking Hands]

You can bring food into the park but I don't know about the restaurants. You can check and see if the have dealt with this diet before and see if they are willing to provide it at sit down restaurants. At the counter service ones as long as you are eating it should not be a problem. Call Disney and explain the problem. They can usually accommodate you in some way.

 

[dj2]

i have a long list of common foods that i need to avoid (wheat, dairy, soy, rice, potato, tomato, etc.) and so it is sometimes difficult for me to find food to eat when we're not in a full service restaurant.

the woman i spoke with at the chef's office for MK told me it would be fine to carry in what i needed. no entrance guard ever said a word about the small soft-sided cooler i carried in, which had carrots, applesauce, hummus, etc., nor the bag of taro chips which was outside the cooler. and i can only imagine that a 2-year-old would eat even less than a 40-year-old!

i think it might be disney's policy for people to not bring food into the parks, but i do not think it is enforced, even for people who do not have special needs. a friend of mine tells me he brings in sandwiches for his family all the time to save money.

i really don't think you're going to have any problem bringing his food in.

have a magical trip!

-dj

 

[3DisneyNUTS]

Originally posted by Mike Bartenhagen
Broc turned two in January but cognativly he is only about 9 to 12 months. It is going to be difficult but we have been through 7 medications with no success and he is still having 20 to 100 seizures per day so it is our best option. We aren't worried about him wanting to eat what we eat but are wondering if Disney will have a problem with us bringing food into the restaurants and the park.

Why did you research the diet if your son has no seizures?

Mike

Mike I am very familiar with the keto diet. Could the restaurants make something accordingly for your son that way you can all go out to eat. Like strictly protein and you carry a little scale yourselves? This way you wouldn't have to carry food everywhere.

Also another idea may be to rent DVC points and get a 1 BR with a full kitchen so that you guys can have a fridge and prepare your own meals at "home". This way you can do at least breakfast, bring lunch and then have dinner back at home. I know you guys may miss eating out but it may take the stress away from worrying how your son is goning to eat. You can get groceries delivered to the room also. Having the full kitchen would be awesome. The studios have a microwave and a small fridge but not too much control there for food prep so I would look into the 1 BR option.

My son had a stroke in utero and have researched the keto diet for his seizures. Right now he is on carbartol which is controlling them but one day when we plan to wean from the meds this may be the only alternative.

I am sorry you guys have to deal with this....seizures suck.

 

[Mike Bartenhagen]

Did your son have infantile spasms or did the seizures start later?

I am reading the Keto book right now and I think it would be a possibility that restaurants could cook what you need but with so many variables I think it would be easier to bring our own. My parents are DVC members so we will be staying in a two bedroom at SSR which will help a lot.

Your right seizure suck. I am glad you have control.

Mike

 

[Talking Hands]

Mike go to the search function and put in ketogenic diet. There is at least one thread in there about how another family dealt with this. They did bring all the child's meals.

 

[3DisneyNUTS]

Originally posted by Mike Bartenhagen
Did your son have infantile spasms or did the seizures start later?

I am reading the Keto book right now and I think it would be a possibility that restaurants could cook what you need but with so many variables I think it would be easier to bring our own. My parents are DVC members so we will be staying in a two bedroom at SSR which will help a lot.

Your right seizure suck. I am glad you have control.

Mike

Chris was diagnosed with his the week of his 3rd birthday. He started having them a few months before. His docs seems to think he was having subclinical ones prior and they weren't caught.

http://health.groups.yahoo.com/group/ketogenic/messages

Here is a support group for people doing the keto diet. I have found the groups on yahoo to be very supportive and informative. There are others on there too click on groups and in the search type in ketogenic diet. I haven't been on the Keto ones so I am not sure which have the most info but the ones I am on in yahoo are great.

 

[SueM in MN]

Your other thread didn't show up ???
Here's a link to another thread about ketogenic diets. It's from a year ago, but most of the info should still be pretty appropriate.

 

[mommie2angels]

Mike, we never have a problem bringing in food for our daughters. Sometimes they need something they can eat right then and there is not always something around.

Also did we discuss if your son has tried Vigabatrin? It helped with our daughter's infantile spasms. When she started taking chemotherapy for her cancer her infantile spasms stopped completely. The doctors think it was something in one of the chemo meds. As of yet they haven't narrowed down exactly what it might have been. She was seizure free for one year after she finished chemo. Now she is back to have anywhere from 2-10 seizures a day. No more infantile spasms though.

 

[Mike Bartenhagen]

Thanks for all of the advice. I looked at the other tread and there is a lot of helpful information.

We did try Vigabatrin about a year ago and did not have an success. Like your daughter his are no longer spasms but other siezure types.

Mike

 

[barrysprot36]

Our DS, now aged 12, was a keto kid for 9 months when he was 6 yrs old. During that time we went on holiday to Rhodes, Greece. We used to take our scales into the dining room at meals. Does your son have the 'liquigen'? Our holiday company gave us a free fridge for this.

The diet didn't work with Joshy as the medications he was still on had carbs in them & his levels didn't rise enough.

After this Joshy was fitted with a VNS and has never looked back. He still has seizures but nowhere near as many & he is much more alert too. In May he had the battery & wires replaced.

The meds Joshy is on are: Stiripentol, Keppra & Tegretol Retard. This cocktail along with the VNS are working fine for him.

We are holidaying in WDW CBR in 10 days for 14 days.

 

[amasonmom2four]

I just wanted to post and sing the praises of the Ketogenic Diet since you are considering it. My daughter has severe cerebral palsy and has had seizures since she was 3 months old. When she was 15 months old, we started the Ketogenic Diet. Before that time we had tried many meds and combinations of meds and none worked for longer than a couple of months before the seizures would return. Within days of starting the diet, she dropped from 40 seizures a day, down to only 2 or 3 a week. After 3 months on the diet and a few minor adjustments she was seizure free. For the first year on the diet she ate orally, but now she is g-button fed because she has problems managing her secretions and swallowing. We are pleased with the results of the diet, and she has now been on the diet for over two years. We are looking at getting the VNS sometime this year so we can eventually wean her off the diet. I just wanted you to hear from someone who has a child on the diet.
By the way, when we go to Disney, we take Chrissy's Ketogenic formula with us and take a container of mixed formula with us into the parks. We are able to store it in a fridge at the baby care center and we return there for her g-tube feedings. We have always found the CM's at the Baby Care Centers to be very helpful.
Angela

 

[wide awake]

I checked into the diet because I was worried about seizures that might be undetected, a Landau-Kleffner thing. This was years ago, and then in May I went to an Autism conference and there was some discussion of the Keto diet.