Managing Breathing Problems with DIPG Patients

Some children with DIPG have difficulty breathing. This issue can be due to increased secretions (drooling) in the mouth and back of the throat, weight gain associated with use of steroid medications, infection, coughing, wheezing, low blood counts, or the tumor affecting the nerves that control breathing. It can be scary for you and your child if he/she has trouble breathing. One of the most important things you can do when your child has trouble breathing is to remain as calm as possible and help your child remain calm, as anxiety may increase breathing difficulties.

Here are some tips to counteract common causes of breathing difficulties for children with DIPG:

  • Reduce anxiety: Create a calm environment. Even though the moment may be frightening, take some deep breaths to calm yourself down so you can remain calm and in control. Ask your child’s social worker or child life specialist to teach you techniques to help calm your child down. Sometimes playing soft, quiet music, speaking in a slow calm voice, and doing some deep breathing exercises can help your child calm down and relax so he/she is not as short of breath.

  • Combat shortness of breath: Teach your child to take slow, deep breaths when he/she starts to feel short of breath. Other tips include using a small, hand held fan to blow air gently in your child’s face; keeping the room well ventilated or opening a window; changing your child’s position—such as from lying to sitting, to lying on his/her side, to elevating the head of the bed or using another pillow to raise up his/her head and shoulders.

  • Avoid smoke: Do not smoke around your child and don’t let other people smoke around your child.

  • Reduce increased secretions: Your child may have difficulty swallowing his/her saliva, or may make noisy or gurgling sounds when he/she breathes. This is usually due to saliva pooling in the back of the throat. You may also notice that your child is drooling more from his/her mouth. There are some medicines that can be used to help dry up the saliva, and an oral Yankar suction machine can also be helpful; this device is similar to the suction straw used in your mouth at the dentist office. Ask your doctor or nurse practitioner if medicines or a suction machine might help.

  • Treat infections: Sometimes antibiotic medicines can help if your child has a respiratory infection. If your child has a fever, a lot of coughing, or greenish sputum (coughing up phlegm), he/she may have an infection. A chest x-ray might be taken to help your doctor or nurse practitioner diagnose an infection.

  • Treat wheezing: If your child has wheezing due to constriction of the bronchial tubes in the lungs, which can be similar to what a child with asthma experiences, your doctor or nurse practitioner may prescribe a nebulizer or inhaler medicines to open up the tubes that go to the lungs to help your child breathe better. Elevating the head of the bed or using extra pillows can help with wheezing, as well as keeping smoke away from your child.

  • Check for low blood counts: Hemoglobin carries oxygen around our bodies. If your child has a low hemoglobin (Hgb) level, he/she may develop shortness of breath or breathing trouble. If low blood counts are found to be the cause of the breathing difficulties, a blood transfusion can be given.