Re: OK I am starting to get worried about this trip

[Guest guest]

Crystal,

I fly w/ at least 2x a year. She is only tube fed.

1st you can ship the pediasure, or you can box it, check it and mark it

medical supplies and you are not charged if you are over the 2 suitcase pp

limit.

Otherwise, if you have room for another suitcase, you can put it in a suit

case.

2nd I always bring 2 cans w/me on the plane. As long as the seal is not

broken. Plus I have doctors orders for all her meds that are given and i take

them on board w/me in case my luggage is lost. If you do not have a doctors

order, you can write a letter, list all the meds including the pediasure and

ask your doctor to sign it.

As far as meds, erika has 3 eye drops, allergy medicine, inhalers, put them

in a clear zip lock baggie. The doctor's letter is very helpful. I also

sometimes can bring a bottle of water, still sealed on as i explain that she is

only fed through a tube.

Also, contact the airlines ahead of time, you need special assistance and

they will help you with things on board., ie: the feeding tube cannot be open

for take off and landing, something about pressure.

Relax, it will go just fine!

see you in california!

Cathie

************************************** See what's free at http://www.aol.com.

[Guest guest]

Crystal,

There are prolly a lot of moms here that have flown with their child before

that can give you more advice, but here goes mine.

Call the airlines and see what you can and can't bring onboard, let them

know that the pediasure is the only means of nutrition, so you will have

to be able to bring some on board. If need be you may have to get a

letter from your ped.

Also check with them on what they do about wheelchairs.. some want

you to check it and use theirs going to and from the plane, some will allow

you to use yours and check it at the gate.

They are gonna charge you out the kazoo for checking the pediasure

on their plane, some are charging up to $100 for extra baggage now.

There is always the option of shipping it ahead of time via UPS or the like

to the hotel where you will be staying (check with the hotel on their procedures

on that).or someone local that will bring it to you. Also check with your

supplyer

on whether or not they will ship for you or have another option for you

getting it here.

On the mom that had to dump her kids sippy cup.. she was being an a** about

the rules about not being able to bring liquids on a plane, so when told she'd

have to empty it she did so.. right there on the floor and called them names

when they told here to clean it up. So no worries for you kiddo... I just can't

picture you cussing out a security guard..

Good luck and enjoy the conf.

Casey

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[Guest guest]

Crystal and everyone,

I am working on the next issue of CHARGE Accounts. With luck, it will be

in the mail this weekend and most of you will have it by the middle of

next week. One of the things we will have in this issue is an article by

Sheryl Doolittle who has been traveling back and forth to Perkins from

Iowa this past year with her daughter, . Sheryl originally sent

this to the List when there was discussion about traveling by air a few

weeks ago. She has revised it some for the newsletter.

I am going to paste the article below so you can start preparing for

your trip. There were other tips given in that other discussion so you

might want to check the Yahoo Archives.

My thanks to Sheryl for sharing this.

n

The conference is almost here and many of you will be traveling by air.

My daughter started attending Perkins School for the Blind last

September. In traveling from Iowa to Massachusetts by air, we have run

into some difficulties getting supplies through the security check

points under the current guidelines. With the conference fast

approaching, I would like to share with you some ideas that might make

your trip less stressful as you fly based on our recent trips to Boston.

Since liquids have been limited, it can be difficult getting the

formulas through security. I insist on traveling with a two day supply

of formula in my carry on bag. The TSA says they have the right to

limit you to the quantity necessary for you to reach your destination.

That doesn't take into account those delays that always seem to happen

when you are not prepared. To avoid being limited, I carry a written

prescription written on prescription pad paper (some agents won't accept

just a letter) from the doctor to show that it is a prescription only

formula that I can't just purchase at the local store. I also have a

letter from the pharmacy stating that it is a special order formula to

reinforce that you can't just find it anywhere. I also suggest

contacting the TSA call center at to request the name of

your local TSA Screener Manager to discuss any specific requirements

that they might want you to abide by. To reduce my hassles, I now

contact the airports that I am traveling through to let them know of our

flight times, and the amount of excess liquids that I will be traveling

with. They then notify the appropriate screener supervisors that we

have been given the ok to have our quantity of formula so that we have

less hassle at the check points. I still get questioned but now all I

have to do is have the screener check with their supervisor because we

called ahead and we then get to move on through the line.

Remember, you have to declare all liquids and gels at the security check

points. You will want them all in one place so when packing your

liquids and medications; I suggest that you place all liquids in one bag

before heading to the airport. Once you are through security, then you

can place what you need in your diaper bag to have accessible during the

flight.

For those of you with feeding pumps, I suggest that if you could have it

empty and disconnected as you go through security, you will have less

hassle. I assume they will need or want to scan it to make sure it is

ok. It's more work to get it ready and to hook up your child after you

pass through security, but you might appreciate getting through security

faster in doing it this way.

I don't know for sure how they check babies, but was sleeping

very hard when we tried to go through security one day and she needed to

be in a wheelchair. She had to be given a quick pat down. I had to

make sure her coat was off (I assume blankets would need to be removed

from a baby) and once the agent said she was ready to check , I

was instructed that I could be near her to observe and assist if needed

but if I were to touch her, then I would become subject to a pat down

and private search as well. To make sure that does not get left

unattended, I always send whoever is traveling with me through security

first. Once they have been cleared, then I send , then myself.

That way I know there is someone to be with while I am dealing

with the liquids and equipment.

Speaking of equipment, medical equipment is not supposed to count

against you for your carry on bag allowance. If you are traveling on

any smaller planes, they will usually make you valet check your bag

plane side. However, when I explained to them that the bag had almost

20K in medical equipment and assistive devices, they did allow me to

keep it with me. So that I don't have to valet check the bag, I always

make sure I pack it so that I know I can get them stowed in the overhead

or under my seat properly.

Northwest, American and Delta do not count an infant diaper bag against

your carry on and 1 personal item per " ticketed " passenger allowance.

However, if your child is not a " ticketed " passenger, they do not have

an allowance and their carry on baggage will count against your allowance.

I always ask for wheelchair assistance. Jess is mobile but when you

have so much to transport from one place to another, it makes getting

from one gate to another. If you have several bags and are changing

planes, don't hesitate to ask for assistance. It is best to notify the

airline of your needs before your trip and then confirm the request at

the ticket counter. When you are leaving the airport, I have also asked

for and gotten luggage assistance. That really helps if you have a lot

of bags and are short of hands.

Planes are flying full these days. But, it does not hurt to ask when

you get to the gate if there are any seats where you could give your

child more room. Sometimes they can adjust the seating to give you that

extra seat so your child can feel less confined.

If you will need lots of supplies while at the conference, you might

think about having your supply company ship what you need directly to

the hotel. That will minimize the amount of luggage you need and make

things a little easier. If you are packing liquid formula in a checked

bag, remember to pad it well. Bags are tossed and thrown. One leaker

and your clothes are a mess.

Last but not least, remember to allow yourself plenty of time to get

through security. That way you won't feel rushed and if you do have any

trouble, you will know that you are prepared for anything they throw

your way.

I hope that everyone has safe and smooth travels. If anyone has any

other questions, I can be contacted at sdoolittle@...

sdoolittle@...>.

Sheryl Doolittle, Mom to , 20

supermama95 wrote:

> I have never been on a plane before in my life and of course my 1st

> time is after 9-11 and with a special needs child. My worries are

> delay or missed flight, getting her wheelchair on and her pediasure.

> Eva only drinks pediasure and eats baby food. I get it for free from

> WIC so I don't want to have to buy it in California. My brother said I

> could check it but I can't have it as a carry on, which is ok as long

> as he is 100% sure I can do that, I dont want to lose all that

> pediasure. I was watching the news and this security guard at an

> airport made a mom dump out her sons sippy cup!! WHAT??? I just worry

> that will be me. I hope she doesnt get hungry its is a 4 hour flight.

> I also worry I will forget something, I have made about 100 lists and

> I still worry.

> Please tell me it will all be ok!!! LOL!

> Thanks,

> Crystal

--

> n A Norbury, Executive Director

> CHARGE Syndrome Foundation, Inc.

> 2004 Parkade Blvd, Columbia MO 65202-3121 USA

> phone/fax; (families only)

> mailto:mnorbury@... or mailto:marion@...

> web site: http://www.chargesyndrome.org

[Guest guest]

Also, the rules about liquid (so far as drinks and such) only apply to what you

bring with you before you go through screening and security. Once you're in the

gated area, anything that you can buy there can be taken on board.

Jeanie

[Guest guest]

I heartily agree with the idea of contacting the airlines prior to travel.

Although did not have feeding issues, there were others - including

the need for meds in flight. I don't remember/know which airline you're

using, but both American and United have " handicapped " desks. We only

used United a very few times when we had to fly via Chicago to and from

Boston, but they were simply wonderful --- even had a waiting area for

various passengers far from the crowds. We flew many, many times each

year while was attending Perkins (our elder daughter was stunned

on several occassions when the ground and flight staff greeted us

downright lovingly), and I believe you just need to do a bit of phoning and p

lanning. If crew could handle with a major earache at 30 ft., I think

they can handle most things. Martha

Note: the direct phone # for the desk at American used to be a guarded

secret, i.e., one had to go through the general #. It's quite possible that

Andy still has the #; if you need it, let me know. It's useful for getting good

seats (even if you already have others), and it's possible that you'd be

bumped to 1st. class --- which makes things much, much easier.

[Guest guest]

Crystal,

We just flew a week and a half ago to and from Houston with Jack. We had our

doctor write a letter (actually I wrote it and he typed it on his letterhead)

explaining all of the equipment, formula, and meds that Jack needed. Since we

had a letter from the doc there were no questions asked at security. Make sure

you have all meds and other liquids in sandwich bags. We found it easiest to

put all of these things in the same carry on bag because they make you take them

out to scan them. we had things in different bags the first time and it took us

forever to get everything back. Know that medical equipment (including

pediasure) is not considered a carry on. Also, when you get to the gate tell

them that you are travelling with a special needs child. This will allow you to

pre-board even before the first class and people with children. Also ask if

there are any empty seats. They may be able to switch your seats so Eva can

have a seat to herself for free (unless you had

to buy her a ticket, i don't know what the age rules are). While waiting for

our plane and on layovers I had a blanket and i found a corner of the gate and

let Jack lay out and play. I feel this helped him because he wasn't strapped in

for too long. I hope this helps. Feel free to ask any questions! If you'd

like, i'll send you a copy of the letter.

~

Mom of Jack (9mo. CHARGEr)

Jack has a carepage! www.carepages.com Title: Jackspage

OK I am starting to get worried about this trip

I have never been on a plane before in my life and of course my 1st

time is after 9-11 and with a special needs child. My worries are

delay or missed flight, getting her wheelchair on and her pediasure.

Eva only drinks pediasure and eats baby food. I get it for free from

WIC so I don't want to have to buy it in California. My brother said I

could check it but I can't have it as a carry on, which is ok as long

as he is 100% sure I can do that, I dont want to lose all that

pediasure. I was watching the news and this security guard at an

airport made a mom dump out her sons sippy cup!! WHAT??? I just worry

that will be me. I hope she doesnt get hungry its is a 4 hour flight.

I also worry I will forget something, I have made about 100 lists and

I still worry.

Please tell me it will all be ok!!! LOL!

Thanks,

Crystal

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[Guest guest]

Hi Crystal,

I fly with regularly. It is usually a little stressful until

we are on the plane... He has a cochlear implant and so can't go

through the metal detector. THat combined with his feeding pump,

pediasure and med always raises eyebrows. I have to say that I have

gotten smart over the years. GET A DOCTORS NOTE!!! Best advice. I

travel with a note saying my son has a medical condition that

necessitates tube, meds, etc. People are usually so nice and

accomidating. THe only thing I have had taken was water and they

were nice about it saying they sold it on the other side. I always

keep 3-4 cans with me (actually I buy the bottles for travelling).

THen I check the rest through. I have never had a problem.

Good luck & have fun.

Barbara (mom to 6 1/2 & Zach)

>

> I have never been on a plane before in my life and of course my

1st

> time is after 9-11 and with a special needs child. My worries are

> delay or missed flight, getting her wheelchair on and her

pediasure.

> Eva only drinks pediasure and eats baby food. I get it for free

from

> WIC so I don't want to have to buy it in California. My brother

said I

> could check it but I can't have it as a carry on, which is ok as

long

> as he is 100% sure I can do that, I dont want to lose all that

> pediasure. I was watching the news and this security guard at an

> airport made a mom dump out her sons sippy cup!! WHAT??? I just

worry

> that will be me. I hope she doesnt get hungry its is a 4 hour

flight.

> I also worry I will forget something, I have made about 100 lists

and

> I still worry.

> Please tell me it will all be ok!!! LOL!

> Thanks,

> Crystal

>

[Guest guest]

CRYSTAL YOU WILL BE FINE!!!!

>

> Hi Crystal,

> I fly with regularly. It is usually a little stressful until

> we are on the plane... He has a cochlear implant and so can't go

> through the metal detector. THat combined with his feeding pump,

> pediasure and med always raises eyebrows. I have to say that I have

> gotten smart over the years. GET A DOCTORS NOTE!!! Best advice. I

> travel with a note saying my son has a medical condition that

> necessitates tube, meds, etc. People are usually so nice and

> accomidating. THe only thing I have had taken was water and they

> were nice about it saying they sold it on the other side. I always

> keep 3-4 cans with me (actually I buy the bottles for travelling).

> THen I check the rest through. I have never had a problem.

> Good luck & have fun.

> Barbara (mom to 6 1/2 & Zach)

>

>

> >

> > I have never been on a plane before in my life and of course my

> 1st

> > time is after 9-11 and with a special needs child. My worries are

> > delay or missed flight, getting her wheelchair on and her

> pediasure.

> > Eva only drinks pediasure and eats baby food. I get it for free

> from

> > WIC so I don't want to have to buy it in California. My brother

> said I

> > could check it but I can't have it as a carry on, which is ok as

> long

> > as he is 100% sure I can do that, I dont want to lose all that

> > pediasure. I was watching the news and this security guard at an

> > airport made a mom dump out her sons sippy cup!! WHAT??? I just

> worry

> > that will be me. I hope she doesnt get hungry its is a 4 hour

> flight.

> > I also worry I will forget something, I have made about 100 lists

> and

> > I still worry.

> > Please tell me it will all be ok!!! LOL!

> > Thanks,

> > Crystal

> >

>

>

>

[Guest guest]

Thanks Belinda!!! I knew someone would tell me that sooner or later.

HUGS,

Crystal

> > >

> > > I have never been on a plane before in my life and of course my

> > 1st

> > > time is after 9-11 and with a special needs child. My worries

are

> > > delay or missed flight, getting her wheelchair on and her

> > pediasure.

> > > Eva only drinks pediasure and eats baby food. I get it for free

> > from

> > > WIC so I don't want to have to buy it in California. My brother

> > said I

> > > could check it but I can't have it as a carry on, which is ok

as

> > long

> > > as he is 100% sure I can do that, I dont want to lose all that

> > > pediasure. I was watching the news and this security guard at

an

> > > airport made a mom dump out her sons sippy cup!! WHAT??? I just

> > worry

> > > that will be me. I hope she doesnt get hungry its is a 4 hour

> > flight.

> > > I also worry I will forget something, I have made about 100

lists

> > and

> > > I still worry.

> > > Please tell me it will all be ok!!! LOL!

> > > Thanks,

> > > Crystal

> > >

> >

> >

> >

>

>

>

[Guest guest]

I would like to add something on the formula topic. I just took back to

Boston. 's formula was discontinued by the manufacturer so I had to take

my supply from home to get it used up. I had 3 cases to pack. It took up a lot

of space and made my bags close to the 50 lb limit. I had never checked formula

before, but i packed it carefully in the clothes for protection.

When arrived in Boston, one of my bags was dripping with formula. I went to the

airline and they said they weren't liable. They felt it was the way it was

packed. Funny the other 2 bags were fine.

When I got to the hotel and looked.in the bag, it had been searched by the TSA,

all three were. The one that had the mess appeared to have had some of the

formula removed and not put back properly causing it to open when the bag was

tossed around. Luckily my coat caught most of it in the bag but the bag itself

seems to be messed up after washing it several times.

If you are going to check formula I recommend bagging it in plastic so if you

get a leaker you still have clothes to wear.

Also, remember that the TSA can't deny you a prescription formula, but they can

limit your quantity.

I hope everyone has safe and hassle free travels to the conference.

Sheryl

Mom to