DS7 had another asthma attack today - leave Sunday - GAC/Wheelchair/Stroller?

[JamesMom]

Hi all,

I am being a panicking mom so bear with me as this is probably longer than it needs be. Usually I post here for my spectrum younger son.

My DS7 has a history of seasonal allegeries which triggers occassional asthma attacks (1-2 a year). Well, this 2010 has been a dozy so far. He has had three major attacks in the last 2 months, one requiring ambulance to the hosiptal for low blood oxygen and one today - Wednesday. We leave for Disney on Sunday.

The doctor has upped his regime as his asthma is now more chronic than episodic. His first grade class is going to the zoo and the doctor advised him not to go so he is staying home.

Unfortunately, Walt Disney World is not a total indoor activity.

I hope that the pollen/triggers here in north Texas are not in Orlando, but on the chance they are...

The doctor has written a note on perscription pad paper that he should have accomodations the keep him from being overheated to prevent 'exercerbations'. I have this in mind to getting a GAC card to hopefully have him queue in indoor or at least shaded locations.

He also needs to limit streneous activity - ha! in Disney where you can clock miles without batting an eye - of course, I am concerned.

He is 51" tall and seven years old. I suspect he might be too big for a stroller? The GAC card would allow him in queues with the stroller, right?

But I am considering rental a wheelchair for 2 reasons: can use outside of parks (staying at POR) and wouldn't garner too many stares in line. I would fold it up for bus transport since he is ambulatory, so I am sure I'll hear whispers anyway I am thinking of using an offsite company.

Any ideas, suggestions or am I being a paranoid mom?

 

[clanmcculloch]

Orlando Stroller Rentals rents special needs strollers that are basically larger strollers that can hold up to 100lb. It'll be cheaper than the park strollers, more comfortable than a wheelchair and as you already noted, you'll be able to use it to and from the busses at the parks and resort. He'll have to get out of it to get on the bus as it is not designed to be strapped down on the bus.

Yes, you can get a stroller as a wheelchair tag for the stroller if you're worried about him walking through the lines (some are long).

If you haven't alread done so, you should probably request a VIP cleaning for your room. This will help reduce his overall allergen exposure, at least while in the room which will hopefully help his body be able to cope when out and about.

Be prepared on hot days to either leave the parks mid-day or at least plan to do indoor shows and maybe TS meals mid-day in order to avoid the worst of the heat.

Hopefully people with more experience with severe asthma will chime in with their experience.

 

[pudge the fish]

please keep in mind that WC at WDW are adult sized, bulky and hard to push.
a 7 YO may not be too comfy in one.

if you can rent a Special needs stroller that may be better. and you can get a tag with Stroller as a WC that will allow you to use it in lines

Now onto the heat. it's hot today and muggy. it's going to be hot walking outside just not waiting in line. many places do not have waiting areas inside for a line. I suggest a sun hat and a misty fan ( get one in advance as they are $$$$$ at WDW I have asthma and so does DD 11-
I would get a good touring plan, get FP's and go early and come back late.
Just walking around World showcase is over 1 mile so it really isn't the waiting in line thats hot- it's hot all over WDW. it's hot walking form Buzz lightyear to Splash Mountian. I have issues standing in a crowded line with little air movement and little movement..- Think Jungle cruise..

There is a list someplace around here that list places that people with asthma have issues with..
I can go into pirates but can't do Ellen's energy adventure

 

[jerseygirl81]

If you use a GAC you may have less standing outdoors or in the heat. I don't know anything about the stroller/wheelchairs but forget about what people say or a look they give you, your ds and is health is your main concern some people pass judgement to quickly without knowing someones health issues. Enjoy your trip! Linda

 

[gamomof2]

You won't need the doctors note to get the GAC. They will want you to explain his needs and they will write the GAC to accomodate that. They will also give you a tag to place on the stroller that tells the CM's to treat the stroller as a wheelchair. We have a transport chair for our 15 yr old. She has lung disease and is immune deficient. She walks some and rides some. She also takes her peak flow meter with her to the hotel. She started using one of these when she was 5 and it is a great help to gage how her breathing is. Any drop of more than 20 % gets a treatment. Any 50% drop gets a nap and we stay in the room until the number comes back up. Humidity and pollen are awful right now.

The transport chairs are light (ours is ~14 lbs) and very narrow and easy to push. We take turns. She's also decorated hers. Insurance covers it but even out of pocket it's only around $150. Also a preventive neb treatment might help too. Has the doctor ever mentioned Pulmicort? It's a long term neb treatment that's used as a preventive med not a rescue. Does wonders to reduce inflammation and narrow the tubes so reactants (like pollen and smoke) don't aggravate things so much. Also we've had luck with Singulair keeping her airways less stressed.

Good luck with your trip and I hope he has a great time.

 

[JamesMom]

You won't need the doctors note to get the GAC. They will want you to explain his needs and they will write the GAC to accomodate that. They will also give you a tag to place on the stroller that tells the CM's to treat the stroller as a wheelchair. We have a transport chair for our 15 yr old. She has lung disease and is immune deficient. She walks some and rides some. She also takes her peak flow meter with her to the hotel. She started using one of these when she was 5 and it is a great help to gage how her breathing is. Any drop of more than 20 % gets a treatment. Any 50% drop gets a nap and we stay in the room until the number comes back up. Humidity and pollen are awful right now.

The transport chairs are light (ours is ~14 lbs) and very narrow and easy to push. We take turns. She's also decorated hers. Insurance covers it but even out of pocket it's only around $150. Also a preventive neb treatment might help too. Has the doctor ever mentioned Pulmicort? It's a long term neb treatment that's used as a preventive med not a rescue. Does wonders to reduce inflammation and narrow the tubes so reactants (like pollen and smoke) don't aggravate things so much. Also we've had luck with Singulair keeping her airways less stressed.

Good luck with your trip and I hope he has a great time.

OP, here

We haven't done the peak flow thing. The doctor gave him Pulimcort yesterday in the office and it opened him right up. He also got that on the ambulance ride in Feb. He was put on Advair, Allegra and Singulair for daily, seasonal management yesterday. He's taking an oral steriod for the next 4 days. He also has a Venitrol inhaler (nebulizer in a tube) which he just got yesterday, as well. We purchased a pulse ox meter after his last ER visit so we can monitor him that way. The doctor said nothing about the peak flow stuff, should she have?

This is all new to me as we have been handling his asthma with simple nebulizer treatments with abuterol and that's it except for 1 'major' incident a year requiring either a doctor visit or ER visit. All other episodes responded to the nebulizer...until now. This year has been crazy so to adjust to this new regime RIGHT BEFORE a trip is nervewracking.

Can you tell me more about the 'travel chair' you mentioned? I looked up the special needs chair at Orlando Stroller Rental (thanks for the referral, other posters!) and it'll cost 120 for the 6 nights we'll be there. Might as well buy one right?

Thanks for the responses.

 

[SueM in MN]

This part is more for other readers, since the OP has already found the rental information: Click the link in my signature to get to the disABILITIES FAQs thread which will have information to help you.

Post #2 of that thread has information and links about renting special needs strollers toward the end of that post.

You may also want to look at post #6 of the disABILITIES FAQs thread, which has information about Guest Assistance Cards.

I agree with the posters who wrote that your biggest problem is going to be out and about, not the queues.
All the attractions at AK are actually outside. The queues are covered and out of the sun for the most part, but almost all of the attractions are outside.
Most of the queues at MK which are outside also are either very short (like Peter Pan) or are outside themselves (like Aladdin's Magic carpets or Jungle Cruise), so there is no cooler place to wait. The outside waiting areas do have roofs, usually with fans and some even have air conditioning in the outside lines.
The lines are not equally long all day. For example, we were at Epcot on Sunday. When we arrived in the park, Spaceship Earth had a line that was an hour long. By the time we left the park, guests were walking right onto the ride without waiting at all.
Two years ago, during Easter, my DH, son in law and nephew wanted to hit all the roller coaster/thrill rides in one morning. By going to the early open park (for resort guests only), they were able to go on Expedition Everest, Kali River Rapids, Rock N Roller Coaster, Tower of Terror, Mission Space, Space Mountain and Big Thunder Mountain Railroad.
They rode some of them more than once (got a Fastpass and then rode) and (obviously) had to travel from park to park, but were still back after riding all of them before noon.
Tour Planning services like Tour Guide Mike or Ride Max can help you with knowing where to go for the shortest wait. Plus, if you have Verizon cell service and a plan that includes internet, you can get the official Disney Verizon app that allows you to see wait times and other helpful info.

 

[SueM in MN]

Can you tell me more about the 'travel chair' you mentioned? I looked up the special needs chair at Orlando Stroller Rental (thanks for the referral, other posters!) and it'll cost 120 for the 6 nights we'll be there. Might as well buy one right?

Thanks for the responses.

Forgot to add about this.
You can find them fairly easily - do an internet search for "Transport Chair" or "Transport wheelchair" and you can find quite a few places that have them. You would be able to find a selection at less than $100.
Some may have to be shippped, but you may have a local equipment store that sells them and has them in stock (likely to be more expensive there). I've also seen them at Sam's Club.

 

[ireland_nicole]

one thing the transport chairs don't have though is any kind of sunshade, which can really contribute to overheating; also, his feet will be dangling all the time, that can get pretty tiring; just things to keep in mind.

 

[jmartinez1895]

I have a child with asthma and rather than bore everyone here with the details I'm sending you a PM. Just wanted to let you knwo so you can look fori t.

 

[daneenm]

I am really surprised they have not given you Pulmicort for the nebulizer before this. Our son has had illness induced asthma, and now some allergen based asthma) since he was 1 and every time he wheezes, we immediately do a combo of albuterol and pulmicort in the nebulizer (pulmicort less frequently, 2X/day). This keeps him from going from bad to worse. Since you are travelling, I would recommend asking about it. We also always travel with liquid steroid just in case all else fails.

One thing I did not see mentioned was to make sure he showers every night. this will help ensure he is getting those allergens away ASAP.

We had very good luck at WDW with no allergy attacks

 

[thedisneymom]

All good advice-VIP cleaning include change blankets, bedspreads, and ac filter. Call Disney reservations with your number and they will add this. Shower off pollen whenever you go back to your room and a clean set of clothes each time you go outdoors. I never wear what I wore in the afternoon if I go out again in the evening. If your hotel has the new smart technology for the AC ask for an override so its stays on all the time even when their is no movement in the room. I also leave a huge note taped to the AC control panel "Housekeeping please leave on asthma." This always has worked. Good luck . Let us know how your child enjoyed the vacation.

 

[disfan07]

The peak flow meter is an extremely important part of an asthmatics emergency plan. Is this doctor a pediatrician or a pulmonoligist?
If his asthma has gotten this bad, he should be seeing a pediatric pulmonologist, not just a pediatrician.

The peak flow is essential because it is split up into a green zone, a yellow zone and a red zone. Normally, if you are in the green zone, you're within normal range, yellow zone means to follow the regimine for asthma attack treatment at home and/or go see the doctor, red zone usually means ER ASAP. AT least that is what it is for me.

I would suggest trying to get a peak flow meter ASAP. From what my pulmonologist told me, Normally, a persons peak flow will drop before the O2 levels drop so it is an extremely important part to preventing a severe asthma attack becasue you can treat it much earlier.

 

[christymarie]

As far as strollers go I totally recommend the Maclaren Major special needs stroller.

http://www.amazon.com/Maclaren-Major-Positioning-Push-Chair/dp/B000GHZI2C

You can rent them from area locations that Sue mentioned above that will be much cheaper than buying them since they are incredibly expensive. The best thing about it is that is folds to just slightly larger than a large umbrella stroller, weighs very little, and would fit your son perfectly. It's hard to find one with a sunshade but if you get one of those umbrellas you can clip to a wagon it works great.

You will have to carry around the foot rest as it does not stay attached, and while annoying, it's not a deal breaker for how light and compact this stroller is.

 

[SmallWorld71]

As someone whose DD has been rushed to the hospital because she couldn't breathe, I would say you are not paranoid. It is very scary!

DD7 has asthma. (She has albuterol and pulmicort inhalers and a nebulizer with the same for back-up). Anyway, on our last trip (a summer trip) she was able to still fit in a stroller so we used that. She looked a little silly, but who cares! There is no way she could have walked in the heat all day. I am not telling you not to get a GAC, but as has been mentioned, the biggest problems are often not the queues. They are waiting in line for characters (can you use a GAC for that?) and also for the outdoor shows/ parades etc.

I hope you have a great trip.

 

[SueM in MN]

As someone whose DD has been rushed to the hospital because she couldn't breathe, I would say you are not paranoid. It is very scary!

DD7 has asthma. (She has albuterol and pulmicort inhalers and a nebulizer with the same for back-up). Anyway, on our last trip (a summer trip) she was able to still fit in a stroller so we used that. She looked a little silly, but who cares! There is no way she could have walked in the heat all day. I am not telling you not to get a GAC, but as has been mentioned, the biggest problems are often not the queues. They are waiting in line for characters (can you use a GAC for that?) and also for the outdoor shows/ parades etc.

I hope you have a great trip.

GACs are not used for the outdoor character meet and greets.
The indoor ones would not be a problem for the OP since they are in air conditioned buildings.

 

[SmallWorld71]

GACs are not used for the outdoor character meet and greets.
The indoor ones would not be a problem for the OP since they are in air conditioned buildings.

Thanks!

 

[stitch'sgirl]

My son's asthma always flared up right before a Disney trip. We thought it might be the excitement, so one time we tried not telling him, and he still had issues. Just luck, I guess. Anyway, I asked his dr to write a prescription for a travel nebulizer. It is small, and can be operated with an electrical outlet, car charger, or rechargeable battery. It has saved many a Disney trip!

 

[gamomof2]

Peak flow meters are great for the house. We use hers about as much as we use a thermometer. It's also a good precursor for him for when he starts to do full Pulmonary Function tests (which should be soon).

Our daughter's transport chair has leg/foot rests so her legs don't dangle. We bought a clip on fan and a clip on umbrella. She has decorated it so it is more personal and feels homey. She also has a chair cushion for it. There were only small pockets on the back so we bought a backpack that we can put odds and ends in.

She has Pulmicort nebulizer medicine but it is not a rescue med and generally takes about 2 weeks in the system before you see any response. But used consistently it can provide alot of help to decrease inflammation and help fend off problems. She uses Xopenex (which doesn't always rescue as fast as Albuterol) and Intal if she is in distress.

Definitely get him in with a good pediatric pulmonologist. He will want to do spirometry readings in the office and the nurse will work with you both about how to use the peak flow meter and Asthma Action Plan at home.

 

[kritter47]

As a lifelong chronic asthmatic (moderate persistant), I'm not quite sure I buy some of what your doctor is selling. Overheating shouldn't have anything to do with an attack - raised heart rate would, but not simply standing outside in 100 degree heat or whatever. In fact, cold air is significantly worse for asthmatics. Getting excited tends to raise your heart rate which increases how much oxygen you need which makes you breathe faster which can start an asthmatic episode, but just being hot won't do that.

There's no way he should be staying home from a zoo trip, either. Exercise is great for asthmatics. The stronger we can make our lungs, the better they can react to the chronic inflammation issues. My father has really, really, really bad asthma (his first PFT was a 25 and he's only at 50 on all sorts of steriod treatment), and he played competitive soccer for years and years before screwing up his knees.

Pulimocort is an inhaled steriod and will not "open him right up." Physically impossible. Albuterol/atrovent/proventil/epinephrine all will open someone up. Pulmicort needs 1-2 weeks to get into your lungs to effect the chronic swelling of asthma.

Pulse-ox meters are a decent idea but a peak flow meter is a much, much better long term control because it measures him against himself and it gives you a sense of how he's doing over time. You can have a smoldering asthmatic episode that isn't serious enough to land you in an ER but your peak flow will definitely be down, but a peak flow will show definite changes.

General travel tips - Bring 2-3 rescue inhalers and make sure they're relatively new/not empty. Keep one with you, one with him and one in a redundant location (suitcase). Take it at the first hint of wheezing/tightness/coughing/whatever his symptoms are. Sit down and take a break when he feels winded, which is different than tired. Make sure the room has no hint of cigarette smoke (shouldn't be a problem, but you'll never know). Make sure they don't use air freshener/purfumed spray in the room if you can help it, or at least ask about things like that. Don't go into perfume/scented candle areas of stores.

Depending on where you are in North Texas, I can recommend some very good asthma specialists for you (raised in DFW), or they can give you info about someone closer to your area. From the information you've given me, I'm not sure you've got a great doctor for pediatric asthma.

*really late to the party but got so worked up reading bad advice from a doctor I couldn't resist