Son with CP, declining health and leave for Disney on May 24, many questions

[mcissel03]

It took me a long time to convince my husband to take our family to Disney World. We finally leave in 17 days on May 24-May 30. It will be both of us and our five children. But now, I am scared, sick to my stomach and just not sure I am ready for it.

My 10 year old son has quadriplegia spastic cerebral palsy, ADHD, vision problems, anxiety issues, and was diagnosed in July with Lyme Disease. The Lyme Disease has spread and he has Lyme encephalopathy, joint involvement and it is in his CNS. The past month he has become weaker, extremely tired (struggles to stay awake), sick, nauseous, pain in all of his joints, struggles to walk (he asked for a wheelchair last week) and each day, he is worse. He is a large quantity of medication as well. He is fair skinned, red head and the one medication he is to stay out of the sun because it will cause him to burn quickly (impossible to do while). His blood work has come back and now they are concerned he has the l* word and I don't even want to type it out because I don't want to think of it.

I know he won't be able to walk the entire time. I have looked at Orlando Stroller and saw they have a special needs stroller that holds up to 100 lbs. Is that one difficult to get on and off the shuttle? To move around the park? He is 61 lbs and I wonder if he could get away with the one that holds up to 75 lbs. Then, I fear I waited to long and they won't have one for us.

We are staying at POP. They have us in two rooms, connecting. One is with a role in shower/king bed, the other two beds. I just realized we need a fridge because he has to take so much medication. Do the king size rooms/roll in showers still come with a small fridge?

Can you take water bottles into the parks?

What else should I do, prepare, know....I have this knot in my stomach and feel that I am making a mistake.

Then, our twins have pretty bad asthma, our 5 year old has ADHD and he can't sit still and runs off, and our 11 year old has ADHD and emotional issues. I have a knee replacement and asthma. UGH!

Any helpful tips appreciated...

 

[disneyfan19712006]

The kingsize handicap rooms do have a refridgerator. I know you are overwhelmed right now.
As far as the stroller I know on the Orlando Stroller websites they have videos of the strollers closing it looked very easy you might want to check the video for the one you are intersted in. The stroller will be more comfortable than a wheelchair.
Take a deep breath, take it easy and take your cues from your son, when he is tired take a break at the hotel or even in the baby care center, I'm sure they will give you a cool spot to hide away for awhile. Sounds like the whole family will need a rest. If you need and ECV for your knee call Walker mobility at 1-800-scooter. They deliver to hotels.
Enjoy your trip, your son and the rest of the family will have a great time.

And yes you can take water bottle into the parks.

 

[Applemomma]

It took me a long time to convince my husband to take our family to Disney World. We finally leave in 17 days on May 24-May 30. It will be both of us and our five children. But now, I am scared, sick to my stomach and just not sure I am ready for it.

My 10 year old son has quadriplegia spastic cerebral palsy, ADHD, vision problems, anxiety issues, and was diagnosed in July with Lyme Disease. The Lyme Disease has spread and he has Lyme encephalopathy, joint involvement and it is in his CNS. The past month he has become weaker, extremely tired (struggles to stay awake), sick, nauseous, pain in all of his joints, struggles to walk (he asked for a wheelchair last week) and each day, he is worse. He is a large quantity of medication as well. He is fair skinned, red head and the one medication he is to stay out of the sun because it will cause him to burn quickly (impossible to do while). His blood work has come back and now they are concerned he has the l* word and I don't even want to type it out because I don't want to think of it.

I know he won't be able to walk the entire time. I have looked at Orlando Stroller and saw they have a special needs stroller that holds up to 100 lbs. Is that one difficult to get on and off the shuttle? To move around the park? He is 61 lbs and I wonder if he could get away with the one that holds up to 75 lbs. Then, I fear I waited to long and they won't have one for us.

We are staying at POP. They have us in two rooms, connecting. One is with a role in shower/king bed, the other two beds. I just realized we need a fridge because he has to take so much medication. Do the king size rooms/roll in showers still come with a small fridge?

Can you take water bottles into the parks?

What else should I do, prepare, know....I have this knot in my stomach and feel that I am making a mistake.

Then, our twins have pretty bad asthma, our 5 year old has ADHD and he can't sit still and runs off, and our 11 year old has ADHD and emotional issues. I have a knee replacement and asthma. UGH!

Any helpful tips appreciated...

First off....welcome to the DIS! You've come to the right place. This wonderful community of people from all walks of life and all ranges of abilities will answer your questions and ones you didn't think of. Like Disneyfan said, take a deep breath and know that, from everything I've read and experienced, Disney is one of the best places to go with children, or adults, of any kind of medical or physical challenges!

I don't know about fridges in the king rooms but you can always rent one for a fee ($10? a day). Water bottles are absolutly allowed in to the parks. Don't forget to take advantage of the First Aid stations for rest and such. Read up on the GAC's...they may be a good idea in your situation. I second the idea of an ECV too if you have mobility issues....you can rent them at the parks but it's pricier then having one brought in from off site (they'll bring it to your hotel) and then you'll have it for whenever you need it, not just in the parks. This is only an option for you though, not your son as I think you have to be 16 to operate one.

Above all shed any kind of expectation that you should do as much as you can to get the most out of your vacation. You will have a much better, less stressful time if you plan to take each day as it comes, and be prepared for changes in the program....if it isn't working switch gears! And don't be afraid to ask the CM's for help or advice. If it's within their power they'll do everything they can, and 90% of the time if it isn't in their power they'll find someone who's it is!

Stock up on memory cards for your camera, sunscreen and just enjoy being a family....even if you spend it by the pool or watching the Disney channel with pizza delivery! You'll be fine!

 

[christymarie]

Take the water bottles but also know that you can get ice water from any CS restaurant. It's a nice way to cool off since the water bottles don't stay as cool.

 

[kknpj]

I have a ten year old daughter with special needs. We have the Liberty stroller that is shown in the Orlando Stroller Rental. We love it! It is so easy to push and our daughter is super-comfortable in it. I would be concerned that your son would be too tall for the smaller stroller. Just a thought I wanted to share. Good Luck and have a great trip! :

 

[MagicMomentsMom]

if you need a fridge for med's then they will usually provide at no charge, we just showed DD's meds and it was taken care of and not on the bill. We were just in a regular room, so just ask at check in about the fridge or even call ahead and have them put it on the room ressie that you need a fridge for medicines--

 

[mcissel03]

Thank you everyone. I called and spoke with them today. They said that the medical fridge was a compact size. I asked what size that was. No one couldn't answer it. After a few calls, they informed me that if this fridge is not big enough or what we need since he is on a lot of medication and also because of the medicine I am on, ice packs I need and other medical needs, they will bring us a larger one. There will be no charge to us at all for any of the fridges, even if we have to get a larger one. The lady was very accomodating, understanding and said that they will work with us to make sure we have what we need for him. It was such a huge relief.

I am wondering with the all the medication I have to bring with if the airport will question me. There is about 30 different kinds. All are prescriptions, will have the pharmacy label on it still. I will also have to bring some over the counter meds.

Has anyone ever brought a nebulizer and medications? Did you take that as a carry on?

Thank you!

 

[Cheshire Figment]

I will absolutely never check any medical supplies or equipment. A piece of luggage that is completely medical does not count against any luggage limitations.

With as many medications as you indicate, you might want to get several assorted size weekly pill holders at a drug store. I carry three, one for my morning meds, one for my dinner and one for bedtime. That way I'm not carrying 14 pill bottles of various sizes. I do have a card I carry which does list all the medications I take and when I take them, giving brand and generic names as well as dose sizes.

I do have a backpack with a CPAP machine in it, as well as all of my medications, syringes, etc. During a trip I had in March to Texas, the airline was unhappy that I had three pieces of carryon luggage, but one was my small suitcase, one was my computer case and the third was the backpack. Once I explained that the backpack was all medical I had no problems.

 

[mcissel03]

Thank you

 

[kirstenb1]

It took me a long time to convince my husband to take our family to Disney World. We finally leave in 17 days on May 24-May 30. It will be both of us and our five children. But now, I am scared, sick to my stomach and just not sure I am ready for it.

My 10 year old son has quadriplegia spastic cerebral palsy, ADHD, vision problems, anxiety issues, and was diagnosed in July with Lyme Disease. The Lyme Disease has spread and he has Lyme encephalopathy, joint involvement and it is in his CNS. The past month he has become weaker, extremely tired (struggles to stay awake), sick, nauseous, pain in all of his joints, struggles to walk (he asked for a wheelchair last week) and each day, he is worse. He is a large quantity of medication as well. He is fair skinned, red head and the one medication he is to stay out of the sun because it will cause him to burn quickly (impossible to do while). His blood work has come back and now they are concerned he has the l* word and I don't even want to type it out because I don't want to think of it.

I know he won't be able to walk the entire time. I have looked at Orlando Stroller and saw they have a special needs stroller that holds up to 100 lbs. Is that one difficult to get on and off the shuttle? To move around the park? He is 61 lbs and I wonder if he could get away with the one that holds up to 75 lbs. Then, I fear I waited to long and they won't have one for us.

We are staying at POP. They have us in two rooms, connecting. One is with a role in shower/king bed, the other two beds. I just realized we need a fridge because he has to take so much medication. Do the king size rooms/roll in showers still come with a small fridge?

Can you take water bottles into the parks?

What else should I do, prepare, know....I have this knot in my stomach and feel that I am making a mistake.

Then, our twins have pretty bad asthma, our 5 year old has ADHD and he can't sit still and runs off, and our 11 year old has ADHD and emotional issues. I have a knee replacement and asthma. UGH!

Any helpful tips appreciated...

My only advice would be based on your son's medicines and exposure to sun. I'm sure you've thought of this, but I'd either wake up early and go to the parks really early, and leave before noon, or go to them later in the day after 4. Or both. The resorts have many activities, some of them indoors, that might work out well for you.

Also, some may disagree with me, but DH and I split up. We drive down, so have a car. Our younger dd has mild autism, and our older dd wants to stay in the parks til they close!! At this point, dh and I realize and trade off to make everyone happy. One of us goes back to the room with our younger dd. While not ideal it works for our family.

We take turns Taking our younger dd back to the room for a break

 

[jmartinez1895]

As already said, take a deep breath, you will make it and you and your family are goinf to have a blast. We stayed at POP and loved it. We have to get a fridge for our meds as well. Be sure to remind them that you are to have a fridge for medical needs when you check in just to be sure they know you are to have one. As for the stroller, I think that they should have one foe your to rent. Give them a call ( if you have not already and they can put a hold on it). Be sure to use the handicap line at the bus stops. they will let you board with the ramp. This will help you out very much and keep you from having to lift and carry him. Once on the bus you can help him to a seat and then fold the stroller. Be sure to go by the guest services of the first park that you go to and tell them about your child. They will be able to offer some tips and they will give you a GAC, be sure that you get the GAC to use a stroller as a wheel chair and that way you can keep it in the lines with you.
As for traveling with your meds, you will have no trouble at all. Be sure to have them all in a separate bag ( I put ours in a smaller bag inside of our larger carry on) and pull it out along with the nebulizer. Be sure to tell the TSA people that you have medications to claim. If you have a stroller at home that you can take to the air port then you can use it as a wheelchair there as well. Just tell the TSA that your child has special needs and they will help you out. Also you can take the stroller all the way to the gate and they will bring it back to thegate after you land as long as you tell them why you need it. If you don;t have a stroller, then you might want to grab on of the loaners that your air line should have. If might make things more comforatable and safer for your child.

 

[goofieslonglostsis]

Totally agree with CF about how to fly with meds, just wanted to add; don't take the 'exact' amount you're expecting he needs. Always bring along enough for a couple of days extra. If anything happens for whatever reason, you'll be stuck with too little. Airports have been known to close down, flights have been cancelled before etc. Most of the times nothing will ever happen, but if it does at least you wont have to go on a medication hunt.

Also count generously for medical supplies. Change in weather and in daily activities can mean you need more supplies at WDW than you'ld need at home.

As far as sunexposure goes; there are great suits available that will filter out UV-A and UV-B. If need be that can be combined with special cooling vests etc. You'ld be amazed at what is available nowadays. Great thing about him needing a stroller anyway; you can use fabric to shut out as much as possible sun out of his face. Combine that with sunglasses, hats and avoiding peaktimes for sunexposure and you already get a long way.

Have fun!

 

[SueM in MN]

I am wondering with the all the medication I have to bring with if the airport will question me. There is about 30 different kinds. All are prescriptions, will have the pharmacy label on it still. I will also have to bring some over the counter meds.

Has anyone ever brought a nebulizer and medications? Did you take that as a carry on?

Thank you!

I agree with the others that you want to ALWAYS carry on the medication and medical supplies. A suitcase or bag that only contains medical supplies will not count toward your carry on baggage allowance.

We don't have 30 medications, but do bring them in the original bottles. Some people don't choose to do that, but our reasons for doing it is that we have the original bottle with the original prescription number, phone number and address for the pharmacy and physician with us.

TSA does not care about pills, so you do not need to pack those in any special way or show them to the TSA agent.
They only specially screen liquid medications, injections and machines like nebulizers or CPAP. The TSA site says that CPAP machines should be treated like computers (taken out so they can be looked at). Nebulizers may be looked at the same way.
If you have only a small number of liquid medications, in bottles under 3 ounces and they fit in the bag with your other less-than-3-ounce liquids, you can put them in that bag. If they are bigger bottles or too much to fit in your bag, then put them in a separate zip lock bag and notify the TSA agent that they are medical liquids.

As for the stroller, I think that they should have one foe your to rent. Give them a call ( if you have not already and they can put a hold on it). Be sure to use the handicap line at the bus stops. they will let you board with the ramp. This will help you out very much and keep you from having to lift and carry him. Once on the bus you can help him to a seat and then fold the stroller. Be sure to go by the guest services of the first park that you go to and tell them about your child. They will be able to offer some tips and they will give you a GAC, be sure that you get the GAC to use a stroller as a wheel chair and that way you can keep it in the lines with you.

The resorts don't have strollers to rent.
They do have wheelchairs (adult size), but they can't be reserved ahead of time and there is no guarantee that they will have one or that it will be in good condition.
If you need a stroller, you will either need to bring one with you or rent from one of the off-site rental places (see post #2 of the disABILITIES FAQs thread).
Even if you have a large size special needs stroller, I would still recommend getting a Guest Assistance Card/sticker identifying the stroller as a wheelchair. In the past, only people whose children had special needs were using special needs strollers. Recently quite a few people with older children who do not have special needs have been renting the special needs strollers.
So, just having one no longer signifies special needs.

Most bus drivers will load special needs strollers thru the back door, but they may not recognize it as a special needs stroller without the sticker. Don't enter the back door unless the driver sees you and OKs it. The door may close unexpectedly because the driver can't see you.

There is more information in the disABILITIES FAQs thread about bus transportation.

Totally agree with CF about how to fly with meds, just wanted to add; don't take the 'exact' amount you're expecting he needs. Always bring along enough for a couple of days extra. If anything happens for whatever reason, you'll be stuck with too little. Airports have been known to close down, flights have been cancelled before etc. Most of the times nothing will ever happen, but if it does at least you wont have to go on a medication hunt.

Also count generously for medical supplies. Change in weather and in daily activities can mean you need more supplies at WDW than you'ld need at home.

As far as sunexposure goes; there are great suits available that will filter out UV-A and UV-B. If need be that can be combined with special cooling vests etc. You'ld be amazed at what is available nowadays. Great thing about him needing a stroller anyway; you can use fabric to shut out as much as possible sun out of his face. Combine that with sunglasses, hats and avoiding peaktimes for sunexposure and you already get a long way.

Have fun!

Very much agree. You can never count on the weather or delays. If you have a connection and are a few minutes late, that could mean a night in an airport.
We always take along at least a few extra days of medication (I'm very cautious and actually take about a week extra). I save the last medication bottle and put the medication in that bottle to carry.
For each day in the park, I carry a small medication container for just that day's medication (plus a few extras in case of dropping one or something). Even if we don't plan to stay late at the park, I do bring the evening dose of medication so we have an option of staying in the park or not.
If you have any controlled substances, you probably will want to lock them in the lock box of your room so you don't have to worry about anyone taking them while you are out of your room.

 

[chaoslobster]

We don't have 30 medications, but do bring them in the original bottles. Some people don't choose to do that, but our reasons for doing it is that we have the original bottle with the original prescription number, phone number and address for the pharmacy and physician with us.

If you have any controlled substances, you probably will want to lock them in the lock box of your room so you don't have to worry about anyone taking them while you are out of your room.

Just one thing to mention. If you do use controlled substances you really need to bring the original prescription bottle along. Let me relate a horror story to you. This didn't happen in Disney, thank the gods. I'm on several different varieties of narcotic painkiller including Vicodin and MS Oxycontin. I don't deal well with prescription bottles because my hands are clawed up with arthritis, so I always dump my meds into different packagings that are easier to open. I never thought about it until one day when I came back to my hotel to find the manager and the local police waiting there. Apparently the maid who cleaned my room that morning found my used insulin needles and thought they were drug related, so she informed management, my room was searched and they found the narcotics in the in-room safe, at which point the police were called. I told them everything was prescription but of course I didn't have any bottles to show them so that wasn't believed. It took almost 6 hours before I was able to get into contact with my doctor's office and have them fax over a record of all my medications. One of the most awful experiences of my life. These days I don't travel without having all my prescription bottles and photocopies of the scrips with the doctor's name and phone.

Edit: You know, you're getting to Disney on the 24th? As it happens so am I AND I'm staying at the Pop same as you. And I'll be there the whole time you and your family are; I'm not leaving for home til June 3rd. If you would like, send me a PM and I'll gladly give you my cell phone number. I'm heavily disabled, travel with a small army of medications and supplies, and my own personal electric scooter. So I have extensive experience with the ins and outs of doing Disney with disability. It might make you feel better to be able to get in touch with somebody who is right there at the hotel. I can come rescue you if you're having any kind of problem that you don't know how to deal with while away from home or don't know what's available at Disney to solve it. Even if you don't think you'll need the shoulder, make sure to wave hi if you see a tiny redhead on a scooter at the food court!

 

[tripdees]

I just want to say I hope you & your family have a wonderful vacation, filled with all the little magical things that disney has that no where else in the world does. The only advice I have is to 2nd a PP, take lots of memory cards, oh, and extra batteries for your camera. (disney soaks you for those). Good luck & enjoy!

 

[mcissel03]

I just want to say I hope you & your family have a wonderful vacation, filled with all the little magical things that disney has that no where else in the world does. The only advice I have is to 2nd a PP, take lots of memory cards, oh, and extra batteries for your camera. (disney soaks you for those). Good luck & enjoy!

Thank you! Memory cards are bought and all the extra stuff like that Still nervous, I think once we are there, I will feel better!