• After transplant, your child may be on a variety of other medications depending upon his or her individual needs.

• Often times a large surgery like transplant may affect blood pressure, so the transplant team may need to use medications to either help raise or lower their blood pressure.

• Medications may also be used to help with acid reflux if your child complains of heart burn post-transplant.

• As your child transitions from parenteral nutrition to enteral feeds, supplements with vitamins and minerals may be required and will be determined by your transplant team and dieticians.

• It is not uncommon for children to need to take a multivitamin or supplements of calcium, magnesium, iron, potassium, or other vitamins and minerals.

This is a common medication that your child may have been on before transplant. The function of this medication is to treat acid reflux by reducing the amount of acid the stomach produces and is known as a proton-pump inhibitor (PPI). It usually comes in tablet form.

Common Side Effects:

• Headache

• Dizziness

• Abdominal pain

• Nausea and/or vomiting

The purpose of this medication is to speed up the emptying of the stomach and the movement of the upper portion of the small intestines. Your child's transplant team may prescribe this to your child if he or she is having trouble with slow motility or nausea after transplant. It usually comes in the form of a tablet.

Common Side Effects:

• Tiredness

• Trouble sleeping

• Agitation

• Headache

• Diarrhea

• Dizziness

This medication functions to treat diarrhea by slowing down the movement of the gut. It comes in the form of tablets. Your child's transplant team might suggest this medication if they are having high output from their ostomy and frequent bouts of dehydration.

Common Side Effects:

• Dizziness

• Tiredness

• Constipation

This medication functions to prevent and treat blood clots by lowering the activity of clotting proteins in your child's blood. It comes in the form of a tablet. This medication requires close monitoring and usually will require your child to have his or her blood drawn on a regular basis. You also need to be aware that your child can bleed easily on this medication, so you should be careful if your child becomes injured.

Common Side Effects:

• Nausea, vomiting, stomach pain.

• Bloating, gas.

• Altered sense of taste.

• Easy bruising, purple or red pinpoint spots on skin.

Important Tips and Special Instructions:

• Interacts with many drugs, should check to see if any of your child's medications will interact.

This medication functions to prevent and treat blood clots by lowering the activity of clotting proteins in your child's blood. It comes in the form of a subcutaneous (under the skin) injection. This medication requires close monitoring and usually will require your child to have his or her blood drawn on a regular basis. You also need to be aware that your child can bleed easily on this medication, so you should be careful if your child becomes injured.

Common Side Effects:

• Pain, bruising, swelling at the injection site

• Nausea

• Diarrhea

• Swelling in hands or feet

• Fever

Important Tips and Special Instructions:

• Use extra caution with sharp objects to avoid getting cut, bruised, or injured.

• Avoid contact sports.

This is a common medication that you may have been on before transplant. The function of this medication is to treat acid reflux by reducing the amount of acid the stomach produces and is known as a proton-pump inhibitor (PPI). It usually comes in tablet form.

Common Side Effects:

• Headache

• Dizziness

• Abdominal pain

• Nausea and/or vomiting

The purpose of this medication is to speed up the emptying of the stomach and the movement of the upper portion of the small intestines. Your transplant team may prescribe this to you if you are having trouble with slow motility or nausea after your transplant. It usually comes in the form of a tablet.

Common Side Effects:

• Tiredness

• Trouble sleeping

• Agitation

• Headache

• Diarrhea

• Dizziness

This medication functions to treat diarrhea by slowing down the movement of the gut. It comes in the form of tablets. Your transplant team might suggest this medication if you are having high output from your ostomy and frequent bouts of dehydration.

Common Side Effects:

• Dizziness

• Tiredness

• Constipation

This medication functions to prevent and treat blood clots by lowering the activity of clotting proteins in your blood. It comes in the form of a tablet. This medication requires close monitoring and usually will require you to have your blood drawn on a regular basis. You also need to be aware that you can bleed easily on this medication, so you should be careful if you become injured.

Common Side Effects:

• Nausea, vomiting, stomach pain.

• Bloating, gas.

• Altered sense of taste.

• Easy bruising, purple or red pinpoint spots on skin.

Important Tips and Special Instructions:

• Interacts with many drugs, should check to see if any of your medications will interact.

This medication functions to prevent and treat blood clots by lowering the activity of clotting proteins in your blood. It comes in the form of a subcutaneous (under the skin) injection. This medication requires close monitoring and usually will require you to have your blood drawn on a regular basis. You also need to be aware that you can bleed easily on this medication, so you should be careful if you become injured.

Common Side Effects:

• Pain, bruising, swelling at the injection site

• Nausea

• Diarrhea

• Swelling in hands or feet

• Fever

Important Tips and Special Instructions:

• Use extra caution with sharp objects to avoid getting cut, bruised or injured.

• Avoid contact sports.

1. Anti-diarheal medications or medications that help decrease ostomy output.

2. Anti-secretory/ anti-acid medications

3. Bile acid binders

4. Antimicrobials

5. Growth Hormone

6. Glucagon-Like Peptide 2 (GLP-2) Analog

Anti-diarrheal medications slow down the movement of contents through the intestine. This increases the time contents spend in contact with the intestinal wall, thus, increasing absorption.

Examples include:

• Loperamide (Imodium®)

• Diphenoxylate/atropine (Lomotil®)

• Codeine

• Tincture of opium

• Octreotide: This is the man-made form of a hormone called somatostatin. It functions to slow down the action of the small intestine, decrease small bowel secretions, and enhances the absorption of water and salts. It helps to decrease your child's ostomy output and diarrhea if extremely high.

These medications decrease the amount of stomach acid the stomach produces. In children with a short bowel, it is common for the stomach to secrete excess acid, known as gastric hypersecretion. This can lead to increased diarrhea, heartburn, ulcers, poor digestion, and other issues. Your child's team may recommend taking one of these medications to help with these signs and symptoms.

Examples include:

• H2 blockers: famotidine (Pepcid®), ranitidine (Zantac®)

• Proton-pump inhibitors: omeprazole (Prilosec,® Losec®)

• Octreotide

• Clonidine

These function to bind excess bile salts, which can worsen short bowel syndrome malabsorption. They can help with bile salt diarrhea, but must be taken carefully because they can also affect your child's ability to absorb fat-soluble vitamins and nutrients.

An example is cholestyramine.

It is common for children with short bowel syndrome to get small intestinal bacterial overgrowth. This is treated with an antimicrobial agent or regimen. Your child's team will recommend the best antimicrobial treatment. Probiotics may also be suggested to help with SIBO.

Growth hormone, known as somatropin, is made by the pituitary gland in the brain. When released into the body, it promotes the growth and maintenance of organs and tissues. It has been made into a synthetic form. When injected into an individual's with short bowel, it has been shown to enhance intestinal adaptation and increase absorption of fluids and nutrients.

Glucagon-Like Peptide-2 (GLP-2) (Teduglutide, Gattex®): GLP-2 is a substance usually produced naturally by the human body. Gattex® is an injectable analog that is FDA approved for children >1 year of age with short bowel syndrome and dependent on PN.

Function: Improves absorption of fluids and electrolytes by increasing the absorptive surface of the small intestine.

The goal of starting the medication is to help your child have the ability to wean completely from PN.

• When you receive an organ transplant, your body senses the new organ as foreign and your body's immune system attacks it.

• Immunosuppressive medication helps reduce the risk of your body rejecting the new organ by lowering your immune response.

• Since you have a lowered immune response, this also means that you are more susceptible to all types of infections.

• You will have to take these medications for the rest of your life, and it is very important for the survival and longevity of your transplant.

Tacrolimus (aka Prograf or FK506) is an anti-rejection or immunosuppressive medication that the majority of intestinal transplant patients take post-transplant that functions to prevent rejection of the graft by suppressing the immune system.

It usually comes in the form of a capsule that is swallowed and its absorption can be affected by changes in your diet and other medications that you take, so it is important that you follow any instructions that your transplant team or pharmacist gives you in regard to taking this medication.

Common Side Effects:

• Increased risk of infection

• High potassium

• Low magnesium

• High cholesterol

• High blood pressure

• Kidney problems

• High glucose level (diabetes)

• Abnormal dreams

• Tremors/ tingling

• Hair thinning/ loss

• Headaches

Important Tips and Special Instructions:

• Take around the same time each day to keep a constant level in the bloodstream.

• Do not eat raw shellfish or oysters.

• Avoid grapefruit or grapefruit juice (e.g. Sunny Delight, Ruby Red juice).

• Do not have immunizations without doctor’s approval.

• Avoid people with colds and other infections: Your immune system is not as strong as it once was because of this medication, be sure to be aware of this and wash your hands and stay away from those who are ill.

• Always have enough supply of medicine on hand: Skipping this medicine means that you could be putting yourself at risk of going into rejection and losing your graft.

• Missed Dose: If missed by less than 3 hours, take the dose; if close to the next dose do not take a double dose.

Prednisone is known as a corticosteroid and is an immunosuppressive medication. It works to prevent organ rejection by suppressing the immune system. Prednisone comes in tablet form. Dosing will be unique to each patient.

Common Side Effects- Both Short Term and Long Term

• High blood pressure

• Increase in appetite and weight gain

• Steroid-induced diabetes

• Vision changes

• Skin changes (acne, thinning of skin, stretch marks)

• Increased sensitivity to the sun

• Thrush

• Swelling of hands, ankles, face

• Osteonecrosis

Important Tips and Special Instructions:

• Have enough medicine on hand: Skipping this medicine means that you could be putting yourself at risk of going into rejection and losing your graft.

• Do not have immunizations without checking with doctor.

• Avoid infection: Your immune system is not as strong as it once was because of this medication, be sure to be aware of this and wash your hands and stay away from those who are ill.

• Follow dosage schedule carefully.

• Missed Dose: If missed take as soon as possible; if close to the next dose do not take a double dose.

Mycophenolate Mofetil is an anti-rejection or immunosuppressive medication that intestinal transplant patients may take post-transplant that functions to prevent rejection of the graft by suppressing the immune system. It comes as a capsule, tablet, or liquid suspension. Take with water on an empty stomach or with food. Do not crush or break before swallowing.

Common Side Effects:

• Loss of appetite

• Stomach pain

• Nausea, vomiting

• Diarrhea

• Weakness

• Shakiness

• Muscle or leg pain

• Dizziness, drowsiness, headache

• Tremors, sweating, flushing

• Decreased white blood cell or platelet counts

Important Tips and Special Instructions:

• Do not store in direct heat or light.

• Do not store medicine in a bathroom or near kitchen sink as moisture can cause it to breakdown.

• Always have enough supply on hand: Skipping this medicine means that you could be putting yourself at risk of going into rejection and losing your graft.

• Inform provider if you are taking antacids with aluminum or magnesium or acyclovir, they interfere with CellCept.

Get doctor’s approval for vaccinations.

Sirolimus is an anti-rejection or immunosuppressive medication that intestinal transplant patients may take post-transplant that functions to prevent rejection of the graft by suppressing the immune system. It comes as a tablet or oral solution.

Common Side Effects:

• Acne

• High cholesterol, high triglycerides

• Constipation

• Rash

• Low potassium

• Headache

• Loss of energy

• Muscle or joint pain

• Mouth ulcers

• Slow wound healing

Important Tips and Special Instructions:

• Take around the same time each day to keep a constant level in the bloodstream.

• Do not eat raw shellfish or oysters.

• Avoid grapefruit or grapefruit juice.

• Do not have immunizations without doctor’s approval.

• Avoid people with colds and other infections: Your immune system is not as strong as it once was because of this medication, be sure to be aware of this and wash your hands and stay away from those who are ill.

• Always have enough supply of medicine on hand: Skipping this medicine means that you could be putting yourself at risk of going into rejection and losing your graft.

• Store at room temperature, away from moisture, direct sunlight, and excess heat.

• Missed Dose: If missed take as soon as possible; if close to the next dose do not take a double dose.

Thymoglobulin is an anti-human thymocyte immunoglobulin that is derived from rabbits and functions in the immunosuppression of a particular type of immune cell in the body called T cells. If you are in acute rejection, your transplant team may choose to use thymoglobulin as an addition to your maintenance immunosuppression to help save your graft. Thymoglobulin is given intravenously.

Common Side Effects:

• High blood pressure (hypertension)

• Joint or muscle pain

• Abdominal pain

• Increased levels of potassium in the blood

• Low counts of platelets and white blood cells

• Headache

• Fever and/or chills

• Shortness of breath

For all immunosuppressive medications, be aware of the signs of infection, and notify your transplant team right away:

• Pain, tenderness, redness, or swelling

• Sweats or chills

• Wound or cut that won’t heal

• Red, warm, or draining sore

• Sore throat, scratchy throat

• Sinus drainage, nasal congestion

• Persistent dry or moist cough lasting more than two days

• Nausea, vomiting, diarrhea

• Flu-like symptoms (chills, aches, fatigue)

• Trouble urinating

• Bloody, cloudy or foul-smelling urine

• Black, tarry stools

Your child’s transplant team may place your child on a variety of other medications after transplant depending on his or her specific needs. Many medications, called prophylactic medications, are medications that are given in order to prevent infection from occurring.

There are a number of anti-fungal, antiviral, and antibacterial prophylactic medications that transplant patients are often given post-transplant. Each treatment plan will be individualized based on your child’s immune status.

Examples of Prophylactic Medications Include:

• Acyclovir (antiviral)

• Nystatin (antifungal)

• Clotrimazole (antifungal)

• Sulfamethoxazole/ Trimethoprim (Bactrim) (antibiotic)

• Pentamidine (alternative to Bactrim)

• Valganciclovir (antiviral)

Antiviral used to treat or prevent cytomegalovirus (CMV). It comes in tablet form and should be taken with food or on a full stomach for full absorption.

Common Side Effects:

• Headache

• Diarrhea

• Nausea

• Vomiting

• Upset stomach

• Low white blood cells

• Low platelets

Important Tips and Special Instructions:

• Store at room temperature, away from excess heat, moisture, and direct sunlight.

• Missed Dose: If missed take as soon as possible; if close to the next dose do not take a double dose.

Prophylactically used as an antiviral to prevent and treat infections caused by viruses, particularly herpes virus; also used to treat chicken pox and shingles. It comes in the form of tablets, capsules, or liquid suspension.

Common Side Effects:

• Tiredness

• Lightheadedness

• Headache

• Nausea or vomiting

• Abdominal pain

• Skin reactions

• Kidney problems

Important Tips and Special Instructions:

• Most effective when taken as soon as possible after you notice symptoms of herpes infection (i.e. pain, burning, blisters).

• Does not prevent the spread of herpes virus.

Prophylactic antibiotic used to prevent a type of pneumonia caused by Pneumocystis jiroveci and comes in the form of a tablet.

Common Side Effects:

• Anemia

• Sensitivity to sunlight

• Dizziness

• Diarrhea

• Headache

• Loss of appetite

• Nausea, vomiting

• Skin rash

Important Tips and Special Instructions:

• Take exactly as prescribed with a full glass of water.

• Drink enough fluids throughout the day.

• Missed Dose: If missed take as soon as possible; if close to the next dose do not take a double dose.

Antibiotic used to prevent a type of pneumonia caused by Pneumocystis jiroveci used for patients with a sulfa allergy or who cannot tolerate oral Bactrim. It is inhaled into the body via a breathing treatment.

Common Side Effects:

• Dizziness

• Metallic taste

• Fatigue

• Loss of appetite

• Diarrhea

• Cough

• Upset stomach

• Congestion

Important Tips and Special Instructions:

• Store in room temperature, away from excess heat, moisture, and direct sunlight.

• Missed Dose: If missed take as soon as possible; if close to the next dose do not take a double dose.