Writing a Gastroparesis Book - And Need Your Help

So, I have been debating on whether or not to write a GP book for years, now. The reason I haven't done so yet is that I remember what it's like not to have health insurance and having to choose between the doctor and medications for the month or rent. However, I have put most of the pertinent information online for free, in my blog. I am working on my outline at present, before I start writing. I want to make sure I cover a lot of ground, and I do not want to lose focus on that.


I don't believe in profiting off of sick people. If this book does sell well, and that's a shot in the dark, I don't need the money so I could send it to a foundation I trust. That's if it sells well. If it does, maybe I can start a 501(c)3 in Atlanta, and expand across GA to help people to get to doctor's appts, fight with their ins companies for them, help them get assistance or something like that. But, if it went to a great cause, like helping others in the community find rides cheaply or at no cost to them, people who could help with insurance hangups, someone to fight for you with your doctor, I mean, I've got a lot of ideas. Please fill out the form below if you are interested in helping me. I will be glad to give credit where credit is due. I really do appreciate this, because I am so tired of losing friends. We need some help and I'm not saying I'm that person, but I'm going to try my best to write something helpful, and maybe it will be published. I hope if it is, that even if they just sell one, I hope it goes to the doctor/scientist who will do research for us. That's my fantasy. I try to remain optimistic. But, the form is below. Just fill that out and again, thank you.
















If you would like to contact me about the questions above, what I should include, and/or if you want to send me your personal stories with photos (I already have photos people have sent me of them before and after GP, which you can do too - or I'm working on a project on my page Gastroparesis - Emily's Stomach, "A Day in the Life of a GPer" which is an event that shows GPers without make up, hair done, no airbrushing or anything, just how we look daily with GP, if you want to send a picture like that. It's up to you).


You can email it to me at: emilysstomach@gmail.com


I know that this research is NOT scientifically accurate because I do not have access to your medical records or anything, but I still have A LOT of your Progressional Timelines that I wanted to graph and insert into the book. I would like you to email your timelines to me, but please let me know it's OK to for me to use your timeline results in my book, let me know how you want me to use your name, or if you would like me to change your name. I need a valid email address you're mailing it from, just in case I have any follow up questions. Your personal information will be respected because I respect privacy.

If this sounds like something you would be interested in (I was trying to find a correlation in us all), you can find out more information about it here:


http://www.emilysstomach.com/2018/10/request-for-gastroparesis-progressional.html


http://www.emilysstomach.com/2013/05/progressional-timeline-of-gastroparesis.html


I'm hoping, that even though my research is thorough, but not scientifically accurate, that someone will read the book who has the power to make this scientifically accurate and start up a research project.




I'm sure I may think of other questions and things later, but I REALLY appreciate any help you guys can spare. I'm going to include a very special thank you page to each person who emails me to help me with this. I believe in giving credit where credit is due. You guys are amazing and I really hope once I sit down to write this, that somehow, it will get to the right person who can do research for better treatments for us. It's not enough to survive, we need to LIVE too!












Follow me:


www.facebook.com/emilysstomach
www.instagram.com/emilysstomach
www.twitter.com/emilysstomach
www.emilysstomach.com
www.emilysstomach.org
www.slack.com/emilysstomach
www.amino.com/emilysstomach
www.pinterest.com/chikensrule

Information About The Different Kinds of Feeding Tubes Part 1

There are many kinds of feeding tubes out there that can help with Gastroparesis/DTP. I have approached this article a bit different because I do not have feeding tube experience, yet. For the first time for one of my blog articles, I asked warriors with feeding tubes answer a survey of frequently asked questions I have gotten regarding feeding tubes.

I will be splitting this up into two parts because I have received so many replies with personal stories and pictures. I am really impressed with the responses to the surveys I sent out for people with feeding tubes to answer to help those whom may have just had one placed, or whom may be on the fence regarding this decision. I will be expanding on the personal stories, survey answers, and pictures in the second part of this article. Thank you to everyone who were brave enough to help me out on this subject, and for helping people out there who might need extra guidance and reassurance.

I do not have any personal experience with feeding tubes, as I have stated above, so part one of my article will mostly be research.


***WARNING***

THIS ARTICLE DOES CONTAIN PHOTOS THAT MAY INCLUDE, BUT NOT LIMITED TO, FEEDING TUBE SITES, INFECTED FEEDING TUBE SITES, AND MAY CONTAIN GRAPHIC IMAGES IN RELATION TO FEEDING TUBES. I WANT TO WARN ANYONE WHO HAS A SQUEAMISH DISPOSITION, THAT THIS ARTICLE DOES IN FACT, CONTAIN PHOTOS.



I have been fortunate enough to encounter some wonderful people who have feeding tubes. They have shared their pictures with me, which you can find on my website (and some below this article),

https://emily-scherer.squarespace.com/feedingtube/

Source: Located on Image




According to The Feeding Tube Awareness Foundation (https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/), these are the different kinds of feeding tubes,

Source: On Website Listed Above

Nasal Tubes (NG, ND, NJ)

Nasal tubes are non-surgical and temporary tubes placed through the nose and into the stomach or intestine. The choice between nasogastric (NG), nasoduodenal (ND), and nasojejunal (NJ) tubes depends on whether your child can tolerate feeding into the stomach or not.



NG-Tubes

NG-tubes enter the body through the nose and run down the esophagus into the stomach.




ND- or NJ-Tubes

ND-tubes are similar to NG-tubes, but they go through the stomach and end in the first portion of the small intestine (duodenum). NJ-tubes extend even further to the second portion of the small intestine (jejunum). Bypassing the stomach can be beneficial for those whose stomachs don’t empty well, who have chronic vomiting, or who inhale or aspirate stomach contents into the lungs.

My friend, Alley, was kind enough to share her NJ Tube story with me. You can read it here: http://www.emilysstomach.com/2014/03/an-nj-tube-story-by-alley-samms.html

All of the different nasal feeding tubes and placements.
Source:https://tinyurl.com/ychryage




Tips for Little Hands and Nasal Tubes

Babies and small children will often try to pull their nasal tubes out. At night, try putting mittens or socks on your child’s hands to keep him/her from pulling the tube out. You can tape the nasal tube (or feeding bag tubing) down the back of the shirt during the day to keep it out of the child’s way. At night, you may want to tape it further down the pajamas. If the pajamas are two-piece, you can run tubing inside the pajama leg to keep children from tangling.






Nasal Tube Considerations

They are non-surgical and temporary.
They are a good way to quickly get infants and children the nutritional benefits of tube feeding.
They can be helpful in determining if longer-term tube feeding will be beneficial.
Nasal tubes need to be taped to the cheek, which can be irritating to some children.
Little hands often succeed in pulling nasal tubes out. Make sure you discuss accidental removal with your doctor and have a replacement plan, because it will happen.
You may see increased nasal congestion, especially in infants.
Nasal tubes can make reflux, gagging, and oral aversions worse.
Nasal tubes can clog easily because they are very narrow. This is unlikely to happen with regular feeding, but may happen with medications that aren’t in liquid form. If your child has any medications that need to be crushed, discuss with your doctors if there is a liquid, compounded, or dissolvable form that can be used.
Some hospitals do not let infants or children go home with nasal tubes. Discuss this with your doctor in advance (if possible).
Nasal tubes are intended for short-term use. They need to be changed every 3 days to 4 weeks, depending on the type of tube. If longer-term tube feeding is needed, it may be time to discuss a G-tube (gastrostomy tube) that is placed directly into the stomach.
Nasal tubes are highly visible since they are taped to the face. They may draw unwanted attention because few people know what they are. They may also be confused with oxygen, since that is the reference point most people have when they see a tube near the nose.



Life at Home with a Nasal Tube

Parents and caregivers can learn how to place, or 'drop,' an NG-tube at home. You will need to be taught by a medical professional, because the correct placement is very important. Learning to replace the tube yourself makes it a lot easier to do routine changes and replace a tube that gets pulled out at home. You will need to check the placement of the nasal tube after you insert it. It is a good idea to confirm placement before the start of each feed and if your child vomits forcefully. You can get more information on NG tube placement, including videos, on our NG Tube Placement and Verification page.

Taping the tube properly to the face can also make a world of difference. Learn how on our Taping Nasal Tubes page.

NJ-tubes, and some ND-tubes, need to be placed by a radiologist with X-ray guidance to ensure correct placement. They cannot be changed at home.



Questions to Ask

Will it be an NG-, ND-, or NJ-tube?
Will we leave the hospital with this tube?
What should I do if the tube is pulled out?
How long will this tube be in place?
How often do we need to replace it?
How do we replace it?
At what point do we need to consider a more permanent tube, such as a G-tube?
Do I need to check placement before feeding or giving medication?
How do I check the placement?





Gastrostomy (G) Tubes

The most common type of feeding tube is the gastrostomy (G) tube. G-tubes are placed through the abdominal wall into the stomach. This sounds scarier than it is. The G-tube surgery can be performed in three ways: surgically through small incisions using a laparoscope, surgically using a larger open incision, or endoscopically using a scope into the stomach to create the stoma from the inside. The endoscopic method has become the method of choice at many hospitals; however, some institutions still place tubes surgically, and children with anatomic abnormalities or who need other procedures may require a surgical placement. For more information on surgical placement, see our page on G-Tube Surgery.

There are a number of types of G-tubes. Any kind of G-tube can be placed initially. Often it is the surgeon or the gastroenterologist who determines the first type of G-tube placed.




PEG and Long Tubes

These are one-piece tubes held in place either by a retention balloon or by a bumper. They are often used as the initial G-tube for the first 8-12 weeks post-surgery. PEG specifically describes a long G-tube placed by endoscopy, and stands for percutaneous endoscopic gastrostomy. Sometimes the term PEG is used to describe all G-tubes. Surgeons may place other styles of long tubes.

Source: https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/g-tube/

Source: In the Image





Low Profile Tubes or Buttons

Source: https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/g-tube/



These tubes do not have a long tube permanently attached outside the stomach. Instead, they have a tube called an extension set that is attached for feeding or medication administration and then disconnected when not in use. When an extension set is not attached to the button, it lies fairly flat against the body. There are two types: balloon and non-balloon.




Balloon Buttons

Balloon buttons are held in place by a water-filled balloon. Balloon buttons are the most common G-tube for children once the stoma (G-tube site) is fully healed, usually in 2-3 months. The use of balloon buttons as a first G-tube is increasing among medical professionals. Balloon buttons can be replaced at home after caregiver training.




Non-Stop Balloon Buttons

Some surgeons and gastroenterologists prefer the first G-tube to be a non-balloon button. Non-balloon buttons are harder to pull out than balloon buttons. Non-balloon buttons cannot be replaced at home. They are placed in the doctor’s office or at the hospital, sometimes with sedation or a topical pain reliever.




Gastric Tube Considerations

G-tubes can be more comfortable than nasal tubes and are a safer option for longer-term tube feeding.
There are low profile, button-style G-tubes that aren’t as noticeable under clothing.
The balloon button G-tubes can be replaced at home by a trained parent or caregiver.
Balloon buttons and tubes typically need to be replaced every 3 months, while non-balloon buttons need to changed less often, between every 6 months to a year.
G-tubes need to be placed surgically or endoscopically, and there is a recovery period after.
Little hands may also pull out G-tubes.
A common complication of G-tubes is the formation of granulation tissue (which looks like red, overgrown tissue around the tube site) during the healing process. It isn’t dangerous but it can be painful and irritating. It may also bleed easily. For more information, see the Granulation Tissue page (NOTE: The link can be reached if you click on "Granulation Tissue" but I have also included the article below).





Granulation Tissue

Source: https://www.feedingtubeawareness.org/troubleshooting/tube-sites/granulation-tissue/



Granulation tissue is typically red or pink soft tissue that appears bumpy or almost bubbly in nature. It is the body’s attempt to heal the tube site. It can bleed very easily and may grow quite rapidly. However, while granulation tissue may be bothersome, it is not dangerous.

Your doctor can use Silver Nitrate to cauterize (or remove) the tissue, or may prescribe steroid creams, such as Triamcinolone (Kenalog) ointment. There are several different strengths of Triamcinolone cream, so ask for a stronger version if the low strength does not work. Silver Nitrate chemically “burns” off the granulation tissue already there, but does not prevent it from growing back. Make sure to cover the unaffected tissue around the stoma with petroleum jelly or a barrier cream to prevent damaging the healthy skin. It is normal for the granulation tissue to look brown and quite awful after having Silver Nitrate applied.

Another option for treatment is GranuLotion, an over-the-counter product that many parents use to help treat granulation tissue. Home remedies that may help include Tea Tree Oil, Maalox or another antacid, Calmoseptine Ointment, or aloe vera (fresh or gel form).

Stabilizing tubes and extensions can help by reducing friction at the tube site. You can tape them to the stomach or create a tab that can be pinned to a diaper or clothing by folding the tape back onto itself.

Keeping the area dry is extremely important to prevent granulation tissue. At first the site may leak. But within 4-6 weeks, the leakage should diminish. Some families prefer to keep the tube site open to air, some use gauze under the button, and some use cloth tube pads. Using G-tube pads can also help reduce friction and absorb leaks to keep the area dry. Certain types of dressings, such as Mepilex, may also be helpful.

Have your doctor check the sizing of the feeding tube, as an incorrectly sized tube can make granulation tissue worse.



Additional Resources:

Site Care Tips for Feeding Tube Stomas from Complex Child. This has wonderful information in it, It has tips on how to deal with yeast around the button/tube site, how to secure it, clean it, and dress it. This site has a lot of useful information in it, including how to handle a bacterial infection.

Granulation Tissue 101 from Feeding Raya. This blog contains pictures of Raya and how the mother deals with issues like granulation, and contains pictures. It is a wonderful resource for those new to feeding tubes or for seasoned veterans with questions.




Sizing for G-tubes

All G-tubes are sized by the width of the tube, which is measured using the French scale, across the diameter of the tube. G-tube buttons require a second measurement, in centimeters, based on the length of the tube’s stem (the part of the tube that is placed in the stoma or tube site). For example, a 16Fr 1.5cm tube has a French size (diameter) of 16 and a stem length of 1.5cm. The size is listed on MIC-KEY and AMT button G-tubes. G-tubes should have enough room between the tube and the skin to allow one or two coins to slide under. If the tube is pressing tightly against the skin or has much more room, your child may need a different stem size.

For more information about feeding tubes, please visit:

https://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/



I also wanted to share some personal stories I received from people with different feeding tubes. I asked them a series of questions that I have been asked in my support groups many times, and they were kind enough to answer those questions and share their stories.


Kristin G. writes,

Stewart W. writes,

"I thought I'd let you know my experience with an NG tube.

My specialist and I decided that due to my on going weight loss (my nausea was so bad that all I was getting was a maximum of about 300 calories a day from Ensure Plus), I had to be admitted to the hospital for two weeks in order to get an NG tube.

The NG tube was fitted on that Friday after my admission, but it was not pleasant. I will say that swallowing afterwards did feel sore but nothing compared to an endoscopy. I was told by the doctor that some people do not tolerate them beforehand, and unfortunately I am one of those people.

Since being diagnosed with Gastroparesis, I have always noticed what feels like a lump in my throat. If I try to touch it, it makes my nausea worse. Furthermore, I am also being treated for polyps in my sinuses and these issues made the tube unbearable. I suffered from the worst headache I have ever had for three days straight, along with really bad nausea. I'm lucky that I'm not actually sick very much.

My stomach also had trouble with the feed itself and the pump was only set at 25ml per hour. However, even this caused stomach pain, burping, and diarrhea all night (had a fight with the nurses in the morning for not calling them. I was in a private room so had my own loo and just got on with it. I'm used to this anyway).


I saw the nutritionist on the second day and she had me sipping Ensure Plus, one 250ml every two hours, but it took an hour and a half to finish it.


On the third day, I eventually emailed my specialist and told him what was happening, all of the problems I was having with the tube. He said there was no point persevering further and to just get it removed. I'm in the UK but am lucky enough to have private health care, so you get answers to emails even at eight pm on a Sunday night. Otherwise, the nurses wouldn't be able to do anything without the doctor's approval, in which case I would have done it myself.

I honestly think I could have gotten used to the throat part if it wasn't for the blinding headache. I couldn't even lift my head off the pillow.

It even affected my state of mind and I felt really down. I was actually quite tearful. I even texted my wife and kids and told them I didn't want any visitors at first, but as soon as the tube came out, I was fine. It was weird.

Only 10 minutes after the removal my headache was almost completely gone I'm assuming it was irritating my sinuses and the nausea calmed back down to it's usual which seemed nothing in comparison.

We agreed that if I could get 1800 calories a day minimum, then I could go home within the week. I need 2400 but 1800 should stop me loosing weight, it's pretty much a 12 hour a day job as I need to take it so slowly.

My GI wants to see me in a week to discuss what we are going to do going forward as all I am having is Ensure plus , scandishake and coffee of course.

He has talked about a PEJ tube to bypass my stomach but we will see what happens.

Since coming home I have managed to keep my calorie intake up even just making my latte with fortified milk (unflavored scandishake)
650 calories per cup (go me 😁 ).

Unfortunately today the nausea is real bad so not much going in.

I don't want anybody to take my negative experience as the only outcome as the guy in the room next to me had no issues outside of slight discomfort for a day or two, which he said was helped by letting strepsils throat sweets dissolve in his mouth."

The people below were brave enough to share their pictures for Tubie Awareness Month. They gave me permission to post their pictures and I want to commend them for it. They are true warriors, really, anyone with a chronic illness is."

Treatment Options for Gastroparesis & Traveling with a Feeding Tube

Treatment Options for Gastroparesis

"Thomas L. Abell, MD

Dr. Abell will share his 35 years of experience with gastroparesis patients, and the perspective gained from 100 patient focus groups. He will discuss the published work on the NIH Gastroparesis consortium, as well as current thoughts on the pathophysiology of gastroparesis and the gastroparesis like syndrome. He will conclude his presentation with a review of therapeutic options for these disorders."

Treatment Options for Gastroparesis: Image and Information Credit: http://oley.org/?page=webinars


For the complete recorded webinar: https://www.youtube.com/watch?v=mcTb-Qzvaak&feature=youtu.be




Traveling with a Feeding Tube

According to the Feeding Tube Awareness Foundation, which can be found here: http://www.feedingtubeawareness.org/navigating-life/on-the-go/traveling/,

"Traveling these days is always a challenge, especially if you will be taking a plane or even a train. But it can be done, with a little preplanning. Here are 5 simple steps to making your trip work.

Talk to your doctor. At least a month prior to travel, talk to your doctor about your travel plans. Ask your doctor to write a letter that explains your child’s medical condition. Make sure it includes a complete list of medical equipment or supplies your child will have while traveling. Print it out, as only paper documentation will get you through security. See this sample letter from the Oley Foundation.

Create an emergency plan. You need to have a plan in place in case something happens. Research where the closest children’s hospital is to your destination. Ask your doctor for a recommendation for a hospital or doctor in case something happens. Also, make sure to plan for any possible emergencies, such as a tube that falls out, a broken pump, or a lost shipment of formula. Consider bringing your child’s medical records, or at least a summary of them, such as a copy of the AAP/ACEP Emergency Information Form for Children With Special Health Care Needs.

Talk to your homecare company. You will need to bring along medical supplies and formula, which can get quite heavy. Ask your homecare company if formula and supplies can be shipped to your destination, or if they have a local branch that can deliver supplies. Make sure you know who to contact if there is a problem with your pump or charger during the trip. In some cases, the homecare company may even provide an extra backup pump for travel.

Determine what you need to pack. More on this below.

Contact the airline, train, or transportation authority at least 72 hours in advance.



What to Pack

This is a general list of things you might need or want to pack for a trip with a child who has a feeding tube. For more detailed information, see the blog Traveling with a Tubie: What to Pack.

Feeding pump and backpack
Feeding sets (bags)
Feeding pump charger
Feeding syringes or gravity bags
Extension sets and adaptors
Syringes for flushing
Venting supplies, such as syringes, Farrell bags, or venting tubes
Water for flushing while traveling — consider bringing 60ml sterile water containers for air travel or travel abroad
Formula, breastmilk, or blenderized meals — with ice packs if necessary
All medications
Small syringes, pill crushers, or medicine cups for medications
A tube replacement kit, including at least one extra tube, lubricant, a syringe for the balloon port if applicable, and tape
Tape, gauze, and dressings as needed


Remember your Charger!


The number one forgotten item when traveling is the feeding pump charger or power cord. Always double check to make sure you have packed yours.

Parent tip: consider bringing a small cooler or insulated lunch bag to transport formula and medications with an ice pack. You can also purchase small refrigerators that plug into your car.



Airline and Train Regulations

It is critical to contact the airline, TSA, or Amtrak in advance if you will traveling with medical supplies. There are many regulations about what can be carried on, what can be checked, and what must be shipped.

For air travel, a good place to start is the TSA Cares hotline at 1-855-787-2227 or TSA-ContactCenter@dhs.gov. The following TSA-related links will help you find general information for traveling with medical supplies.



TSA Tips for Traveling with Medication

Screening for Passengers Requiring Special Assistance
Travelers with Disabilities and Medical Conditions
Screening for Passengers Requiring Special Assistance
3-1-1 Liquids Rule
Traveling with Formula, Breast Milk, and Juice
Disability Notification Card
Traveling with Children
Screening for Passengers Who Require Medically Necessary Liquids
Screening for Passengers with Medical Devices
For train travel, see Amtrak’s Screening Process.



Traveling with Medical Liquids

From time to time, headlines in the news highlight stories of people who run into trouble while traveling with medical supplies and liquids. These stories can be scary for anyone who is considering flying with these items, but don’t let your fear of the TSA screening process stop you from traveling. While there are no guarantees that everything will go perfectly, ample preparation ahead of time will greatly reduce your risk of difficulty with the screening process. Here are a few things to keep in mind when preparing to travel.

1. You can and SHOULD call the TSA Cares hotline before your trip. The purpose of TSA Cares is “to assist travelers with disabilities and medical conditions.” According to the TSA’s website, it is recommended that passengers call the hotline 72 hours prior to traveling. Representatives at TSA Cares are able to give advice specific to each individual’s particular needs that will aid in the security screening process, and give the traveler a better idea of what to expect when they arrive at the security checkpoint. Moreover, the TSA Cares program can provide a TSA agent to escort the traveler through the airport and assist in the screening process. The hotline’s toll-free number is 1-855-787-2227 and the email address is TSA-ContactCenter@dhs.gov. The hotline’s hours of operation are Monday-Friday from 8am-11pm EST and weekends and holidays from 9am-8pm EST.

2. Use the TSA’s Disability Notification Card. This card can be printed from this link and handed to a TSA agent upon arriving at the security checkpoint to make screeners aware that you will need some type of additional consideration during the screening process. The card will not get you out of any part of the screening process, but it will discreetly alert them to your needs and hopefully help the process to go more smoothly.

3. You CAN carry more medical liquids through security than would be allowed through the 3-1-1 rule. Medical liquids such as formula, breast milk, baby food, and liquid medications are allowed through security checkpoints. The TSA website warns, however, that travelers carrying medical liquids MUST declare medical liquids at the beginning of the screening process due to the additional screening measures required. If you or your child require a specialized ready-to-feed formula that cannot be purchased at a retail store in the event that checked baggage were to get lost, it is a good idea to carry enough formula on board for 2 days. That would hopefully allow enough time once you’ve reached your destination to make emergency arrangements with your supply company or find someone local to the area you are visiting that could spare enough extra to hold you over until your baggage arrives. Any necessary medications should ALWAYS be brought in carry-on luggage.

4. For longer trips, ship supplies and formula to your destination ahead of time if possible. This will prevent you from having to pack all of your needed supplies in your checked luggage.

5. Check with your airline about waived baggage fees for medical supplies. Most airlines that charge fees for checked baggage will allow one bag of medical supplies to be checked without paying the usual baggage fee. You may still want to pack one or two days’ worth of supplies in a separate checked bag as well, just in case the medical supply bag arrives late.

6. Pack your liquids last. If they are the last thing you put in your carry-on bag, they will be easily accessible when it’s time to go through security. Put everything in zippered plastic bags so that when you get to the security checkpoint, it will be easy to pull them out without having to dig through your whole carry-on bag.

7. Print all of the TSA policies that pertain to what you’re carrying with you. While the TSA works to ensure proper training for all its agents, there is always a chance that you will encounter an agent who does not have experience with or a thorough understanding of the policies pertaining to medical liquids and supplies. Print any policies from their website that may apply to your situation and keep them in a zippered plastic bag inside the same bag with your medical liquids where they are easily accessible. If anything comes into question, you can quickly identify the policy that pertains to that item. It is also not a bad idea to have a letter from a physician listing the medical liquids, supplies and equipment that you will be traveling with that may affect the security screening process.

8. Don’t send your liquids through the x-ray machine in a closed carry-on bag. If you have your cans or bottles of liquid formula and medications in zippered plastic bags, it’s easy to pull them out and put them in one of the plastic tubs provided at security. (The plastic bag will also keep them from getting dirty since people put their shoes in those tubs, too.) If you have a soft cooler with medical liquids and ice packs in it, unzip and open it before putting it through the x-ray machine and set it into one of the provided plastic tubs. Before any of your medical liquids go through the x-ray machine, make sure that the TSA agents who are doing the x-ray screening see what you have and hear you say that you are sending medical liquids through the machine so they know what’s coming before it pops up on their viewing screen. Most other medical supplies, such as syringes, pump bags, extension tubes, and medical tape can go through the x-ray machine.

9. It’s okay to ask your TSA screener to put on a clean pair of gloves before handling your medical supplies. Ask nicely, and insist if you need to. Explain that because of the individual’s medical conditions, you are doing everything you can to avoid contact with germs and cross-contamination. It may be a good idea to remind them to put on fresh gloves after coming into contact with your medications as well.

10. When you travel with medical liquids, you WILL be asked to open them, or they may be opened for you. The TSA’s website states, “Liquids, gels, and aerosols are screened by X-ray and medically necessary items in excess of 3.4 ounces will receive additional screening. A passenger could be asked to open the liquid or gel for additional screening. TSA will not touch the liquid or gel during this process. If the passenger does not want a liquid, gel, or aerosol X-rayed or opened for additional screening, he or she should inform the officer before screening begins. Additional screening of the passenger and his or her property may be required, which may include a patdown.” If you are carrying ready-to-feed liquid formula in cans or tetra paks, know ahead of time that you will most likely have to open them and bring something to pour the formula into, such as a spare feeding pump bag or empty baby bottles with tight-fitting lids. Even an empty plastic water bottle will do. To avoid concerns over opened formula spoiling, travel with a small soft cooler and ice packs. Opened formula is good for 24 hours when it is kept refrigerated. Medications will need to be opened and tested as well. Even though the TSA doesn’t require it, it’s a very good idea to put bottles of liquid medications in zippered plastic bags in case of spills. It’s also a good idea to make sure the lids are on tight after they’ve been tested and before you put them back in your carry-on.

11. Frozen items do not count as liquids as long as they are frozen solid. The TSA website states that “Frozen items are permitted as long as they are solid and in a ‘frozen state’ when presented for screening.” This includes ice packs used to keep formula and medications cold. However, if they are at all thawed or slushy, they will be subject to the rules and regulations for liquids. For individuals who use a blenderized diet or breast milk for tube feeds, this would also mean that pre-blended formula or breast milk that has been frozen solid would be permitted without being subject to the additional screening for liquids as long as it is not partially thawed.

12. Allow extra time in case you run into delays at security. Of course this is advised for all travelers, but going through the security screening process with larger-than-usual quantities of medical liquids and individuals with special needs means can take extra time. Find out the recommended arrival time for the airport you will be departing from and add an extra half hour or hour to it, just in case. You may end up sitting at the gate for a longer time than you’d like, but that is much better than missing your flight. If you have allowed ample time before your flight, you will not have the added stress during the security screening process of wondering if you’ll miss your flight or not.

13. Be polite. Patience and a positive attitude can go a long way in helping the screening process go smoothly."

Traveling with IV Nutrition or Tube Feeding
Barbara Klinger (experienced traveler with IV nutrition)
Rick Davis (experienced traveler with tube feeding)
Susan Buckland, TSA (Oley Foundation)

Image and Information Credit: http://oley.org/?page=webinars


For the complete recorded Webinar: https://www.youtube.com/watch?v=3UrnyhaA-8Y&feature=youtu.be

My friend wrote an article entitled, "Tips on Surviving A Car Trip With Gastroparesis."

Image Source taken from Imgur