Disney done differently, (BOG dining updates pages 202 and 203)

Tink,

Glad to see that his blood levels are better. Hopefully this can keep his seizures under control. So sorry that he was awake during this last one.
Does he remember any of it? I hope it isn't too frightening for him.

Hope he gets to see the Animals soon.:)

He said he thought he was choking, he didn't realize he was having a seizure. Once he became conscious, he came out of the seizure quickly.
 
Here are pics I took of recent merchandise promotions:

This was at Epcot

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This is the current promotion at Once Upon a Toy at DTD

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And this is the promotion at Pin Traders at DTD


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Recent refurbishment at MK. This pic was taken back when we did the Mickey meet and greet. It's the bridge leading into Adventurland. It use to be a hill and now it is flat.

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Recently we went to Earl of Sandwich for supper. My favorite soup there is their Wisconsin Cheddar!

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Anakin got the kids pizza sandwich. He did not like the chunks of tomato in the sauce.

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Goofy and I got tuna melts. He ate half of his sandwich, and I was completely full from the soup, so I brought my whole sandwich home and enjoyed it the next day cold, for lunch!
 
He has mostly the automatisms described in the link, as he is falling asleep. Before we knew he had Epilepsy, we thought he must have been dreaming about eating.


Okay, now I am a bit concerned... :eek: How did you find out that he had Epilepsy? How did you find out it wasn't just the 'dreaming of eating'? DD does that nearly nightly. :( Lip smacking and chewing and swallowing. She also gets night sweats too. or so I think/thought. some nights her whole body get flushed, and pooled in sweat, but we just uncover her and she doesn't even wake up. :confused3 Is this something I should bring up at her next appointment? (I have one for may 3rd to get referral for Autism Evaluation.) :confused3

Off to do more reading about this.. :surfweb:

Before that though I wanted to let you know, I AM thinking of you and your family. I really hope the med change will help soon.
 

Hi, your trip report title caught my eye and I have really enjoyed reading through it this morning! We will be "doing Disney differently" on our upcoming trip too. I have two sons with ASD, multiple anaphylactic allergies and a few other diagnoses, and a DH with seizure disorder, so I relate to your from "Schmolland" approach. :)

I hope Anakin is feeling better today, and thanks for sharing your trip(s).
 
Okay, now I am a bit concerned... :eek: How did you find out that he had Epilepsy? How did you find out it wasn't just the 'dreaming of eating'? DD does that nearly nightly. :( Lip smacking and chewing and swallowing. She also gets night sweats too. or so I think/thought. some nights her whole body get flushed, and pooled in sweat, but we just uncover her and she doesn't even wake up. :confused3 Is this something I should bring up at her next appointment? (I have one for may 3rd to get referral for Autism Evaluation.) :confused3

Off to do more reading about this.. :surfweb:

Before that though I wanted to let you know, I AM thinking of you and your family. I really hope the med change will help soon.

Luke has the same issues but he has not been dxed epileptic. He has these petit mal seizures too. I honestly did not think anything of it until he had a grand mal seizure on Christmas Eve a few years ago. This seizure got him to a neurologist and they dxed him with seizures and pointed out that some of the other behaviors we noticed, like the chewing and smacking and teeth grinding at night and the spacey moments during the day, were really seizures. Now he takes a med for the seizures and it helps greatly, also helps with some of his aggression too.
 
Okay, now I am a bit concerned... :eek: How did you find out that he had Epilepsy? How did you find out it wasn't just the 'dreaming of eating'? DD does that nearly nightly. :( Lip smacking and chewing and swallowing. She also gets night sweats too. or so I think/thought. some nights her whole body get flushed, and pooled in sweat, but we just uncover her and she doesn't even wake up. :confused3 Is this something I should bring up at her next appointment? (I have one for may 3rd to get referral for Autism Evaluation.) :confused3

Off to do more reading about this.. :surfweb:

Before that though I wanted to let you know, I AM thinking of you and your family. I really hope the med change will help soon.

I don't mind the hijack at all. In part, I did this TR because March was Epilepsy Awareness month and April is Autism Awareness Month.

Here is a link to a story on the Epilepsy foundation's website http://www.epilepsyfoundation.org/epilepsyusa/magazine/Issue6-2009/AutismandEpilepsy.cfm According to the statistics, 20 to 25% of people with ASD have seizures.

It was surely an act of God that I discovered Anakin having a Grand Mal on Father's Day 2010. We were going to go to early church and then to Epcot for Father's Day. I was at the computer checking email and facebook when I couldn't get the thought out of my head that I should go check on Anakin.

He was having a Grand Mal. Goofy rushed to his side as I rushed to the phone. By the time the 911 operator got on with me, Anakin's face was blue and he wasn't breathing. Goofy started CPR on him and I stayed on the phone with the 911 operator. It felt like an eternity for the fire and ambulance crew to get here. But it was only 2 minutes. He came to in the ambulance.

We were only in the ER for an hour and a half and they sent us home! The ER pediatrician had a CT scan done on him and it came back negative.

Once home, I was completely overwhelmed. And I couldn't believe we were home, just like that. The ER doc said that we needed to get him to a pediatric neurologist in the next week, and that most children will have a seizure in their life and never, ever have one again.

The next day I made an appointment with the pediatric neurologist, but they couldn't see him for two months, but a nurse practitioner at their office could see him in 2 weeks. So I took that appointment. However, that night he had another seizure, though not as intense, and I refused to wait 2 weeks for him to get to a neurologist.

I called my neurologist who I see for migraines, remembering that he did a rotation years ago at Boston's Children Hospital. I asked if they could see him soon, and his office called in additional staff so that he could be seen right away. He was started on Topamax Sprinkles that we had to put in pudding or applesauce. He was scheduled for a sleep deprived EEG and sent to a Children's Hospital to have an MRI.

It just so happened that I was asked to stay with him. Somehow I remembered learning about EEGs in pharmacy school, and asked the technician about the spiking I was seeing. While she wasn't allowed really tell me about it. She did say the spiking was coming from the right side of the brain.

When we went for the MRI, I mentioned to the anesthesiologist that the EEG showed seizure activity coming from the right side of the brain. The MRI was ordered without dye, but the radiologist thought he saw something on the right side that looked like a possible lesion. He suggested in his report that another MRI be performed with dye and a spectroscopy test be done to see if the lesion is cancerous.

The MRI with dye and spectroscopy showed that the lesion was not cancerous. It was a pocket of neurons. These neurons give off electrical impulses that the brain does not recognize and causes seizures. The plan of action was to give medication that would intercept the signals. He increased the Topamax.

This is when the sensory issues started. Seems it almost happened over night. His senses of hearing, sight, taste and touch became so much more heightened. Things that never bothered him suddenly sent him cowering or fleeing. Meltdowns also began. As did hurting himself and him hurting us to try to make it go away. Both the doctor and my husband and I thought it was from the Topamax so he was switched to carbamazepine which helped alot with the seizures, but not so much with the sensory issues.

He was sent for neurocognitive tests too. We learned so much more about his brain and his actions through this battery of testing of him, and the surveys that Goofy and I were given to fill out.

Till it was all set and done, Anakin was diagnosed with Cortical Dysplasia, developmental delay, ADHD, and Asperger's Syndrome. However, the psychologist said that while he tested positive for ADHD and Asperger's syndrome were directly related to the Cortical Dysplasia, so he didn't feel comfortable labeling him with those diagnosis' but said he needed to be treated as though he has both. The neurologist agreed and said that the sensory issues are definately a result of the extra neurons, and he felt the ADHD was a result of the sensory issues. He began cognitive behavioral therapy as a result of these tests.

The neurologist sent Anakin for a PT and OT evaluation. And in January he started OT, and in Feb started PT. Here is where we began to see the biggest changes for the positive in his behavior, sensory perceptions and he began to have less and less seizures!
 
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Before that though I wanted to let you know, I AM thinking of you and your family. I really hope the med change will help soon.

Thanks, appreciate the good thoughts!

Hi, your trip report title caught my eye and I have really enjoyed reading through it this morning! We will be "doing Disney differently" on our upcoming trip too. I have two sons with ASD, multiple anaphylactic allergies and a few other diagnoses, and a DH with seizure disorder, so I relate to your from "Schmolland" approach. :)

I hope Anakin is feeling better today, and thanks for sharing your trip(s).

:welcome: Welcome! Thanks! I hope you have an amazing vacation!

Luke has the same issues but he has not been dxed epileptic. He has these petit mal seizures too. I honestly did not think anything of it until he had a grand mal seizure on Christmas Eve a few years ago. This seizure got him to a neurologist and they dxed him with seizures and pointed out that some of the other behaviors we noticed, like the chewing and smacking and teeth grinding at night and the spacey moments during the day, were really seizures. Now he takes a med for the seizures and it helps greatly, also helps with some of his aggression too.

Glad Luke is on medication and that it helps greatly! Did he get new glasses yet?
 
I know what I'm having when we make our first visit to Earl of Sandwich -- Wisconsin Cheddar Soup...yummy looking. :)
 
I know what I'm having when we make our first visit to Earl of Sandwich -- Wisconsin Cheddar Soup...yummy looking. :)

KarMark, you know how often I go to EoS. Would you believe in all those times, I have only seen the Wisconsin Cheddar twice?! Had it both times, and it was incredible. Usually their tomato soup is my standard. Their tomato is just ok, nothing spectacular. But the Wisconsin cheddar is AMAZING!!!
 
KarMark, you know how often I go to EoS. Would you believe in all those times, I have only seen the Wisconsin Cheddar twice?! Had it both times, and it was incredible. Usually their tomato soup is my standard. Their tomato is just ok, nothing spectacular. But the Wisconsin cheddar is AMAZING!!!

I hope they have it when I'm there. What would you recommend sandwich wise?
 
I hope they have it when I'm there. What would you recommend sandwich wise?

My favorite is their tuna melt!! I also like their kettle cooked potato chips. Don't forget to show your AAA card, if you are a member, to get 10% off your bill!

My husband was afraid to try the tunamelt at first. He does not like most cheese and was worried about the swiss cheese on it. It is a very mild swiss and he really likes it in the sandwich!

If we get soup, we usually share a sandwich.

All sandwiches are served hot, so even the peanut butter and jelly is on a bun and heated.
 
thank you tink for that information, I bet that was pretty scary! :scared1:

I am glad you have gotten positive changed out of the OT and PT. :goodvibes

I'm going to have to keep a closer eye on DD, see if I notice anything that looks like trouble during the daytime.
 
thank you tink for that information, I bet that was pretty scary! :scared1:

I am glad you have gotten positive changed out of the OT and PT. :goodvibes

I'm going to have to keep a closer eye on DD, see if I notice anything that looks like trouble during the daytime.


The only time my son has shown any hints of Epilepsy during the daytime, has been when he is over heated. It usually starts with some kind of visual disturbance and he keeps touching his eye or complaining about seeing blinking lights in his eyes. As soon as we got him cooled down those symptoms went away. We always carry lots of frozen waters to Disney in a cooler bag in case he needs to cool down fast. He has never actually had a seizure during waking hours. All his have been either just after falling asleep or right before waking.
 
Today was a bit of a scorcher outside! It was hot and humid. We decided to go to Animal Kingdom this afternoon. Anakin wanted to practice his birthday.

What does it mean to practice a birthday? He couldn't think of the word celebrate, and practice was what came to mind. His birthday is Thursday. He wanted to go to a Disney park for his birthday and wear the birthday button. Thursday isn't going to work for a park, so we did it this afternoon since he was ahead on school work and it was Goofy's day off!

I checked mobile touring plans in the car on the way there. It listed MK as the park to avoid and Epcot and DHS as the best parks. AK was not listed, so I wasn't sure what to expect.

The parking lot was pretty full, and many cars were parked on the grass. When we arrived there was alot of people exiting the park, and very few people arriving. For Easter week, it wasn't nearly as crowded as I was expecting! But the temps were much hotter than I had anticipated.

Anakin met a boy from the UK while looking at fish.

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Grumpy has 2 pacu at home in his aquarium. They are a couple inches long. The pacu at AK was huge!! It's interesting that it says they are vegetarian. Grumpy's pacu prefer fresh water shrimp and bait fish over vegetation or flakes.


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Crowds really weren't bad.

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The water looked very nasty today!

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After looking at the fish for a long time, we headed to the train for Conservation Station. I don't think we ever had Anakin back there. He was a little reluctant to try something new.

We parked the stroller at the stroller parking. I didn't remember much walking at Conservation Station and thought he would be fine. He noticed some cm with trading pins standing nearby and went to trade pins with them.

Pin trading has become a great way for him to learn how to talk to people! We never know what will come out of his mouth. Today he did a great job. He approached them, and asked them if they would like to trade pins with him. They noticed his birthday button and wished him a happy birthday. He told them his birthday is actually on Thursday but he is practicing it today. One of them gave him a trading pin and told him it's a birthday present! When trading was finished they all gave him high fives. And we headed to the train.

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By the time the train arrived, sweat was making his hair wet. Goofy and I were not sweating at all.

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Anakin did not like the entry way into the building at Conservation Station. It was loud, dark, and there was a sign that made noises as it flipped between scenes. It took a bit of persuasion to get him to walk past that to see the animals.

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There were some really cool animals in there. Most I was very happy were in aquariums, and not out of them!

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We went out to the petting area. Anakin wanted no part of touching any animals, but he was happy to walk in there and look at them.

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Anakin was very hot and sweaty. We stopped for an icecream then headed back to the train.

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When we got off the train, we needed to find a place for him to cool down. We went into a store to cool off. He wanted to ride Kilamanjaro Sarari. So once he was cool enough we headed back out. As soon as he got out in the heat, he couldn't tolerate it, and wanted to go home. We turned back around and headed out of the park. Making stops at each of the stores on the way out to cool down.

By the time we got past the park exit, he was not acting himself. Asked if he was ok, and he said he thinks he was tired. He laid down in his stroller and was sound asleep in seconds. I don't know how he is going to handle this summer's heat?! Looks like many afternoons will be spent inside or in the pool.

Our next stop was TGI Fridays at Crossroads, where we had a really good supper!
 
When we got off the train, we needed to find a place for him to cool down. We went into a store to cool off. He wanted to ride Kilamanjaro Sarari. So once he was cool enough we headed back out. As soon as he got out in the heat, he couldn't tolerate it, and wanted to go home. We turned back around and headed out of the park. Making stops at each of the stores on the way out to cool down.

By the time we got past the park exit, he was not acting himself. Asked if he was ok, and he said he thinks he was tired. He laid down in his stroller and was sound asleep in seconds. I don't know how he is going to handle this summer's heat?! Looks like many afternoons will be spent inside or in the pool.

Our next stop was TGI Fridays at Crossroads, where we had a really good supper!

Any chance a cooling vest would help him out? Or would he not like that? :confused3

thanks for the AK photos, I've been there only once, and don't have it planned this trip. Interesting to see it.
 
Happy birthday to Anakin! I am wondering about a cooling vest myself for Luke. Would love to hear your thoughts on that one.
 
Any chance a cooling vest would help him out? Or would he not like that? :confused3

thanks for the AK photos, I've been there only once, and don't have it planned this trip. Interesting to see it.

Do they make cooling vests in children's sizes? I have a friend who has MS and she pointed me to some adaptive clothing sites, but everything I saw was for adults.
 
Happy birthday to Anakin! I am wondering about a cooling vest myself for Luke. Would love to hear your thoughts on that one.

Thanks! Hopefully Singledad can point me in the right direction to finding adaptive clothing for kids. I did find socks without seams today!
 
Thanks! Hopefully Singledad can point me in the right direction to finding adaptive clothing for kids. I did find socks without seams today!

not much clothing wise that we do... we let her go in underwear only at home, and as soon as it is remotely warm enough we move her into cotton dresses.

as for cooling vests, I've not tried one for her yet, I really really want to though.
 














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