Question 1

Car Seats

Accepted Answer

All states have laws that require babies and toddlers to be properly restrained in a car safety seat that is correct for their age and weight. Have all children age 13 or younger ride in the backseat. Always wear a seatbelt, it’s the law.

Question 2

Post-Transplant Feeding and Nutrition

Accepted Answer

Enteral feeding (feeding to the intestine either by mouth or by tube feeds) is tried with the appearance of gas and effluent (liquid, stool) from your child’s stoma. If tube feeding is initiated, the rate is usually started slowly and then increased as tolerated by your child.
 
Oral intake may be introduced as the tube feeds are being advanced. It is common for children to have oral aversions to feeding as they often have not learned to eat or when they did eat in the past, it was associated with abdominal pain, nausea and vomiting. If your child is struggling with the introduction to oral feeding, trained occupational therapists or speech therapists will be consulted to help your child learn the skills to eat.
If you would like more information about feeding therapies and learning to eat, please visit the Feeding Tube Awareness Foundation website. (https://www.feedingtubeawareness.org/feeding-therapy-oral-aversions/)
 
To read more about the definition of feeding disorder you can visit this page from the Kennedy Krieger Institute. (https://www.kennedykrieger.org/patient-care/conditions/feeding-disorders)
 
After transplant, patients are generally able to achieve linear growth, maintain adequate muscle and fat stores, and transition to an oral diet. Your child will be continuously monitored by the transplant team’s dieticians for growth and the ability to maintain body weight throughout the post-transplant period as well as periodic bloodwork measurement of serum trace elements and vitamins to ensure your child is maintaining sound nutritional status.

Question 3

Food Safety

Accepted Answer

It is important to closely monitor what your child consumes since their immune system is now compromised. Children with weakened immune systems are at increased risk for infections. The risks can be controlled by making sure your child follows simple food safety procedures.
 
First and foremost, make sure your child sanitizes his or her hands before eating any type of food. Ideally, this would be washing hands with soap and water, but in the absence, the use of a hand sanitizer will suffice. In the event that you are eating outside of the home, make sure you always carry sanitizing wipes with you so that you can wipe down tables and chairs even though the restaurant or location you are eating at may wipe down the tables themselves. It is always better to cleanse the table and chairs that you and your child will be using to ensure it is properly sanitized.
 
One of the most important causes for food borne illnesses in the home is cross-contamination. Cross-contamination occurs when juices or blood from uncooked meat, poultry, or fish comes into contact with other foods by means of cutting boards, utensils, plates, countertops, or hands. You can avoid cross contamination by making sure you use separate cutting boards, knives, and gloves when you handle meat versus produce.
 
In terms of actual food, the single most important thing to remember when you eat out is never to eat raw foods of animal origin, such as fish, beef (steak tartar), or seafood. Eating raw oysters, for example, can cause serious problems. Raw oysters can harbor a number of harmful organisms, including a particularly deadly bacterium called Vibrio vulnificus. You also should not eat undercooked foods of animal origin. This means no rare roast beef or undercooked hamburger. Avoid foods that include raw or undercooked eggs, such as Caesar salad, Hollandaise sauce, some custards, and chocolate mousse. Do not eat soft cheeses and discard moldy foods. 
 
It is best to avoid buffets, delis, and restaurants that leave food sitting out for long periods of time. If food has been sitting out longer than two hours then your child should not consume it as it can start harboring potentially harmful organisms and is no longer safe to consume.
 
When purchasing food, do not buy foods in damaged containers such as containers with cracks, dents, or bulging lids. It is also recommended to avoid roadside stands, farmers markets, deli meats, and cooked seafood. You should always check meat, raw fish, and poultry for freshness by reading the ‘sell by’ date on the packaging.
 
For more information, you can view the UPMC page on food safety. (https://www.chp.edu/our-services/transplant/intestine/patient-family-resources/intestinal-transplant-safety/food-safety)

Question 4

Stoma Closure

Accepted Answer

Your child may question why they have a piece of his or her intestine sticking out of their abdomen, this is a natural question and inquiry by a child. Luckily, it is very common that 6-12 months after transplant, the stoma has the possibility of closure.
 
Stoma closure is usually a minor procedure that allows for reinstitution of continuity of the intestine with the rest of the intestinal tract, allowing for your child to pass stool out of his or her rectum. Normally, the stoma opening will close on its own and heal without complications. Once the stoma is closed, maintenance surveillance biopsies will have to be conducted through a colonoscopy or endoscopy, since a stoma will no longer be available for ileoscopies.
 
Please note: Not every transplant center will create a stoma with transplant. Please consult your team to determine what the plan for your child.

Question 5

Activity and Exercise

Accepted Answer

In the hospital, your child may be given an exercise routine by a physical therapist. The exercise will focus on different components of exercise, including:
 • Aerobics: Works on getting the heart rate up and condition the lungs and respiratory system, helping to increase your child’s stamina.
 • Flexibility: This helps to reduce stiffness and increase muscle stretching.
 • Strengthening: This helps your child build muscle strength.
You can continue this exercise regimen once you go home to keep your child active and continue to increase their strength and stamina.
 
For the first three months after your child's transplant, heavy lifting and vigorous sports are restricted. By one-year post-transplant, your child should be able to return to most regular sports. Some sports like football, hockey, and wrestling should be avoided. They involve direct, rough contact which could cause injury or internal damage.
 
Other physical activity is encouraged, as well. Routine childhood activities like biking, swimming, t-ball and hiking should be resumed within the first year depending on your child's rate of recovery and the reccomendations of your transplant team. 
 
It is important to note that if your child experiences any pain or shortness of breath during activity to inform them to stop the activity. If the symptoms persist, call your transplant team right away.
 
It is also important to realize that your child will still tire more easily than other children his or her age. Even though they may feel better than they did before, their body is still healing from a major operation. It is normal for your child to want days of rest or ‘non-activity’ days.
 
Do not see these days as a set-back or as a day to make you worry. If your child has multiple days of rest in a row and it seems as though their energy level has taken a complete 180, then it may warrant a call to the transplant team to make sure something else isn’t going on.

Question 6

Infection Prevention

Accepted Answer

Your child is taking immunosuppressant medications which weaken his or her immune system and increase their risk for infection. Because immunosuppressed transplant recipients are constantly at risk of infection, lifestyle changes aimed at preventing infection and reducing the risk of infection are critical.
 
Immunosuppression does not mean that intestine transplant recipients must avoid contact with people. By making some changes in activity and lifestyle, patients can significantly reduce their risks of acquiring infections. To decrease the risk of infection, your child should follow these guidelines:
 • Maintain general health through nutrition, rest, exercise, and stress reduction.
 • Avoid people who are sick, especially with known viral infections like COVID-19, chicken pox, measles, mumps, mononucleosis, colds, or the flu.
 • Take your medications as prescribed, particularly prophylactic medications and immunosuppression.
 • Contact your transplant coordinators at the first signs of infection.
 • Take recommended antibiotics prior to any dental work. Contact your transplant coordinator for your child’s particular recommendations.
 • Always wash your hands before you eat or drink or take any medications.
 • When in the public restroom, turn the water off and open the door with a paper towel after drying your hands.
 • Avoid gardening, or if you and your child chose to garden, wear a mask and gloves.
 • Cover your entire body, including arms and legs, when hiking.
 • Do not receive any live vaccinations.
 • Receive the flu vaccine every year.
 • Help your child remember to avoid touching their eyes, mouth, nose, and face when their hands are not clean.
 • Get tetanus shots when needed and in the event of a ‘dirty cut.’
 • Do not share razors, toothbrushes, eating, or drinking utensils.

Question 7

Sun Safety

Accepted Answer

Sun exposure happens all year, not just during the summer. The best way to prevent skin damage is to limit the time spent in the sun. Because of side effects with your child’s medicine, he or she must use sunscreen. Choose one with an SPF of 30 or higher. Use it often, even if your child will only be in the sun a short time.
 
To prevent sunburn, your child should:
 • Wear clothing that protects his or her skin, such as a hat, long pants and long sleeves.
 • Put sunscreen on exposed skin 30 minutes before going outdoors and put it on again as the package directs—this usually means you need to put it on every two hours and after playing every two hours and after playing in the water.

Question 8

Returning to School and Daycare

Accepted Answer

Talk to your transplant coordinator about when your child will be ready to return to school, preschool or day care. The transplant coordinator can also advise you of any special plans that may be needed. The goal for all transplant children is to attend school full time. This helps your child keep up with learning, socializing and physical activities.
 
Your transplant center may offer a hospital school program to help with studies when your child is in the hospital. Your transplant coordinator, social worker or hospital school program coordinator usually can help you with plans for your child’s return to school. 
 
This may include letters, guidelines, and options to help explain why your child may:
 • Need to return to school part time.
 • Not be able to receive certain vaccines that are needed to enroll in school.
 • Have limits on contact sports.
 • Need home-care school options for when your child is ill or unable to attend school full time.
Special Education Accommodations:
When your child is facing severe health problems, other challenges may arise when it comes to his or her education. Public schools can offer services and accommodations to students who qualify in order to help them reach their fullest potential while experiencing medical situations. It is best to reach out to the school counselor at your school or refer to the county website for information specific to your child's school and school system.
 
504 Plan:
Students can receive a 504 plan for a medical reason or for a learning process issue. The curriculum or material does not have to be modified or changed. Students can receive accommodations inside and outside of the classroom. 
 
For example, they can receive breaks when in the classroom setting. Students can have extended time in completing assignments, and the amount of assignments can be cut down if the students are showing mastery of the content. Doctors can also help the school in providing accommodations for the students.
 
IEP (Individualized Education Program):
Students need to be referred and go through an evaluation with a Child Study Team. Students who are experiencing challenges such as learning disabilities, ADHD, and emotional disorders may qualify for an IEP. If found eligible, students who are struggling to be successful in the classroom due to their disability or other health impairment can receive services through an IEP. The schoolwork must be modified, as these students cannot process the information like a general education student.
 
These accommodations can be the same as the accommodations for the 504 plans, such as extended time on completing assignments, breaks during classroom instruction, and cutting down the workload to show mastery. Other accommodations include small group testing and read-aloud services.
 
Homebound Services:
Students who are going to be out for an extended period of time due to matters of illness, injury, or surgery may qualify for homebound services, which means that they can receive school instruction at home by a certified teacher provided by the public school system. The timing may differ from county to county, so please contact your school’s counselor for more information.

Pediatric Post-Transplant Life and Responsibilities

Pediatric Post-Transplant
Life and Responsibilities