General Physical Care of a Child with DIPG
Every child is unique in the symptoms and care needs they will have at home. Your child may have none of the needs mentioned here, some of them, or all of them at any given time during the DIPG journey. At times, it may feel as if you have to be your child's at-home nurse. It is important to know what to expect and how to provide care for your child so he/she can stay at home and out of the hospital as often as possible.
This caretaking can be overwhelming at times, but the goal is for your child to live as normal a life as possible, doing the things that he/she enjoys, such as playing with friends, going to school, and being with family. Knowing how to care for your child may help prevent some of the most common problems or help resolve them sooner. This section covers such issues as prevention, medications, breathing problems, nutrition/feeding issues, constipation, skin breakdown, nausea/vomiting, pain, mobility issues, sleeping, caring for central lines, and some common symptoms children with DIPG experience.
Discuss with your health care team any potential problems your child might have. Ask about what you may need at home to care for your child. Be sure that you understand what complications the health care team thinks your child may experience, what medications they are sending home, and the possible side effects of these medications. Also, ask your health care team what signs of medical problems to look for if your child's condition changes.
Infection can be a serious risk for your child, especially if he/she is receiving steroids, such as dexamethasone or certain chemotherapy agents. Being on certain other medications can also make your child more susceptible to infections. Having an infection can cause serious complications for your child, so ask your doctor or nurse/nurse practitioner if your child is at increased risk of developing infections. Infections can be bacterial, viral, or fungal.
You don’t need to keep your child away from other people unless someone is ill. You can let your child go to school or play with other children. But if another child is obviously ill, it is best not to be around that child until he/she is well. If other family members are ill, it is often difficult to keep your child separated from them, and it is not recommended that you keep your child in another room or house. Just try to be as careful as possible about close contact.
The most important way to prevent infection is to have good hand washing practices. You may use regular soap, wash for at least 30 seconds and have several bottles of alcohol-based hand sanitizers available in your home and small ones to keep in your purse, car, and your child's backpack or diaper bag. Teach your child to wash his/her hands well (including under the fingernails) after using the bathroom, before and after eating, after playing with pets, after touching other people, or anytime his/her hands are dirty. Also ask other people including other children who are in contact with your child to wash their hands well before they interact with him/her.
Ask the nurse how to give your child his/her medications and at what times each one should be given. The nurse can make a schedule of all medications with a place for you to record the day and time you give the medications; this type of form is helpful when your child takes several medications. Having a schedule and a record of when you gave each medication will help you remember when to give them to your child.
Ask your doctor or nurse practitioner the following questions about each medication your child has been prescribed.
- Why has this medication been prescribed (why it is needed)?
- When should I give this medication to my child (what schedule)?
- How should I give this medication to my child (with or without food)?
- If pills are prescribed, can they be split or crushed for easier swallowing? Do not crush pills or dissolve pills or capsules in liquid without talking to your pharmacist or nurse/nurse practitioner first. Some medications cannot be safely crushed or dissolved.
- What are the side effects of this medication and what can I do to manage or prevent them?
- Are there any other medications, including over-the-counter medications, that I should avoid giving my child?
- Are there any foods that I should avoid giving my child that might interact with the medications?
- What should I do if I forget to give a dose of a medication or if my child vomits up the dose/pill?
If your child has any difficulty taking the medications or experiences side effects, let your doctor or nurse practitioner know as soon as possible so they can advise you about what to do. Not all medicines have unpleasant side effects or interactions with other medicines. Hopefully, your child will have no side effects with the medications he/she is taking, but it is best to be prepared for what to expect, possible side effects, and how to deal with any that may occur.
Additional tips for medications:
- Keep all medications in a safe place, out of reach of children.
- Record the time you give each medication on the daily schedule and keep track of any side effects your child experiences. Keep this list up to date and bring it with you to every doctor’s appointment or emergency room visit so everyone knows exactly what medications your child is taking and the last time he had each one. This information can be documented in the iCANcer app if you own an iPhone, iPod Touch or iPad.
- Keep medications in a cool, dry, place, especially if the weather is hot and humid. Do not refrigerate medications that are not supposed to be refrigerated, but do not leave medicines in direct sunlight or in a hot car.
- If your child has trouble swallowing pills or liquid medications, ask your nurse for help in finding the best way to give them. For example, some medications can be mixed with special flavors at the pharmacy to make them taste better or can be crushed and put into pudding, ice cream, chocolate syrup, or applesauce.
- For older children and teenagers, consider getting a pillbox to organize medications to be given at certain times of the day. Most drug stores and large grocery store chains sell pillboxes in one day/time or multiple day/time versions.
- Measure all liquid medications with a syringe, if possible, rather than a teaspoon. Regular kitchen spoons can be different sizes and you want to make sure you give the right amount of medicine each time.
- Make sure you understand each medication and why it is being prescribed. In addition to your doctor or nurse/nurse practitioner, your pharmacist can provide you with information about each medication. If you use the Internet to find information, please double check that information with your pharmacist, doctor, or nurse/nurse practitioner to ensure you get accurate information.
- Do not use medications that have not been specifically prescribed for your child. And do not share your child’s medicines with anyone else, even if that person takes the same prescription.
- Do not give your child any herbal or vitamin medications without checking with your doctor or nurse/nurse practitioner. Some common herbs and vitamins can interfere with chemotherapy and radiation treatments, as well as possibly interact with other medications your child is taking.
Pain can occur in children of any age and at any time. There are different types of pain depending upon the cause, the location, your child's special characteristics, the treatments your child is receiving, and your child's past experiences with pain. Not every child with DIPG will experience pain. Some children feel no pain at all. If your child does experience pain, the goal is to relieve that pain as quickly as possible, with the least amount of side effects. This section will describe some ways you can help your child manage pain.
It is important to be able to recognize when your child is in pain. Your child will experience the normal aches and pains of childhood, but sometimes it can be difficult to figure out whether a complaint of pain is a normal childhood experience, such as bumps and bruises from play, or something more serious. Depending on the age of your child, it can be difficult to figure out whether your child is even experiencing pain. For example, infants normally cry, so it can be hard to determine if a cry is from pain or something else. Older children and adolescents may not admit to feeling pain because they may associate pain with having to go to the hospital or taking more medications, which may make them sleepy or nauseated. If you think your child might be in pain, please talk with your doctor or nurse/nurse practitioner about ways to manage your child's pain. Remember that while pain is physical, it can also have an emotional component. Each child reacts differently to pain, so it is important to understand how your child expresses pain. Indications that your child may be in pain include:
- A high-pitched cry or change in an infant's normal cry;
- Changes in facial expressions;
- Rubbing particular areas on the body that may indicate pain;
- Irritability or restlessness;
- Being inconsolable;
- Being less active or mobile than usual and playing less;
- Loss of appetite or changes in eating patterns;
- Changes in sleep patterns.
If your child can talk, ask him/her if he/she has pain and ask him/her to show you where the pain is, what it feels like (e.g., sharp, stabbing, shooting, burning, cramping), what he/she thinks is causing it, and what he/she thinks will help it feel better. You may also choose to show your child pictures of faces that represent no pain to severe pain and ask him/her to point to the picture that best represents how he/she is feeling. The answers to these questions can help you decide how to help your child.
Ways to treat pain without using medications include:
- Reassure your child that pain does not always mean the DIPG is getting worse; explain that all children experience pains during childhood.
- Create a calm and nurturing environment by turning down any bright lights, minimizing noise, and creating a comfortable room temperature. Experiment to find out what works the best to calm your child.
- Use distraction (e.g., singing, reading books, blowing bubbles, telling stories, watching a favorite movie DVD, etc.), relaxation techniques, visual imagery, or play to get your child's mind off his/her pain. Ask your child life specialist, social worker, or psychologist for other strategies to help your child.
- Apply a heat pad or ice pack, whichever your child prefers, to areas of pain.
- Run a warm bath or shower to help your child relax.
- Use massage or gentle touch, but only if your child wants to be touched, because sometimes touch is not comforting. Massaging your child’s hands, feet, and shoulders can help your child relax and give you a way to connect with your child. Many hospitals offer massage classes to teach you how to perform massage techniques effectively.
- Play music—soothing music is best but use music that your child enjoys; or try a sound machine with sounds such as running water or ocean waves.
- Have your child's favorite blankets or stuffed animals or other favorite toys readily available.
- Hold your child to cuddle or rock him/her, or lie in bed next to him/her (if he/she wants you to, as older children may like to be left alone to sleep).
- Let your child cuddle up with the family pet.
- Ways to manage pain with medications include:
- In general, start with milder medicines such as acetaminophen or ibuprofen. However, these medicines cannot be given with certain chemotherapy medications or when blood counts are low, so always check with your child’s doctor or nurse practitioner before giving your child any over-the-counter pain medications.
- With prescription pain medications, read the directions carefully. These medications are prescribed based on your child's age and weight. Do not give more than the recommended dose unless you are told to do so by your child's doctor or nurse practitioner.
- If your child has more moderate to severe pain, your doctor or nurse practitioner may prescribe stronger medicines, such as opiates (morphine, codeine, methadone, etc.). Many types of opioids can be safely used for children. Your doctor or nurse practitioner will explain the directions for giving opioid medications and the expected side effects.
- In general, it is best to give pain medications throughout the day on a regular schedule, or when your child’s doctor or nurse practitioner tells you to give them. Giving medicines on a regular schedule avoids the peaks and valleys that occur when they are only given when your child experiences pain. Just be sure not to give your child more medication than recommended by the doctor or nurse practitioner, or more than is recommended on the bottle for over-the-counter medications.
- If your child is experiencing increasing pain, even though he/she is on strong pain medication, other medicines can be added to help the pain medicines work better.
- Every child is unique, so the plan for managing your child's pain should be the one that works best for him/her.
Common concerns about pain medicines include:
- Addiction and tolerance: Children who are in pain may need strong medications to help relieve it. If your child needs pain medications for a long period of time, he/she may need increasing doses of pain medicines to help relieve the pain. This need for higher dose is known as tolerance, meaning your child needs a higher dose to get the same effect. Tolerance is NOT the same thing as addiction. Addiction is a physical and psychological craving for medication, usually to achieve a "high." Children in pain do not become addicted to pain medications if they are used appropriately and only as your doctor or nurse practitioner tells you to give them.
- Medicine is too strong: Parents may worry that if a strong pain medication, such as morphine, is prescribed it means their child is getting worse. However, morphine is a very good pain medicine and works well for children of all ages, from infants to adolescents. Morphine has been used for many years and doctors and nurse practitioners know a lot about this medication. There are other pain medications that can be used, but morphine is frequently used because it relieves pain so well. If the doctor or nurse practitioner prescribes morphine, or a similar opioid medicine, it does not necessarily mean your child's condition is getting worse. Don't be afraid to ask your doctor or nurse practitioner why a particular pain medication is being prescribed.
- Multiple pain medications: Sometimes medicines may not work too well by themselves, but in combination with other medicines work very well. You may even be able to use smaller doses of each medication when they are combined. Sometimes pain has several different causes, so one pain medication does not treat all the causes. Talk with your doctor or nurse practitioner about why your child is taking each medication and ask them if you can eliminate any of the medicines.
Side effects: If your child is taking opioid medications, be sure to start him on a stool softener to prevent constipation. Opioid medicines slow down the intestines, which can cause constipation. Itching, nausea, and/or increased sleepiness may also be caused by certain medicines. Be sure to tell your doctor or nurse practitioner if your child has any of these symptoms so you can get advice about how to handle the side effects. Generally these types of symptoms happen in the first few days that your child is taking opioid medicines. Talk to your doctor about any other side effects that you think your child might be experiencing from other pain medications as well.