Having a child diagnosed with DIPG is hard.  There are many doctor’s appointments, treatments to get started, possible clinical trials to search for, and so much more. This is a lot for anyone, especially while striving to be a full-time parent while balancing your job and other responsibilities. As your child is receiving treatments for DIPG, you will notice that they require more care and they may experience certain symptoms that require additional attention. As a parent, you may assume a new role of medical caretaker. No matter what care option you choose for your child, this information can be helpful to read!

Home Care: Your time is important, and some parents choose to focus on spending quality time with their child.  A home care nurse can be the right choice for some families.  A home care nurse can assist with personal care, medications, pain management, and other general care for your child.  It is also important to know your health care support system.  Your child will likely have a case manager, social worker, nurse, and physician.  Make sure to talk with them and know when it is appropriate to call each person.  They each have their own specialties and resources to assist you at this time.  If you make the choice to support your child through personal care, it is important for them to be comfortable and for you to be confident.  Here are a few tips for general care of a child with DIPG!

Infections: Infections can be a greater risk when a child is on steroids.  Most children with DIPG are placed on steroids to help manage their symptoms.  Handwashing, specifically after playing with pets, being at the playground, or interacting with high-touch surfaces is important! Visits with other children should be monitored closely and you can reduce risk by having interactions with only one child at a time.

Medication: Depending on how many medications your child is taking, it may be beneficial to ask a nurse to make a schedule of what time each medication needs to be administered.  It could also be helpful to ask what each medication is for. Your child may only need to take them if they are having a certain symptom. Some people choose to keep a record of when their child received each medication in order to better keep track of everything and to have a better understanding of which medications may be helping or causing certain side effects.  Medications should generally be kept in cool, dry places that are out of reach of children.  Kids are known for being stubborn and not enjoying taking medications. Try crushing up pills into pudding or applesauce. You may also be able to request medication in a chewable or flavored format that would be more appealing.

Pain Management: Many children with DIPG struggle with various types of pain.  There are a few methods that seem to help with pain management. Some of these include medication or are medication-free. Pet therapy has been proven to help reduce stress and discomfort.  Warm showers or massages can help to relieve muscle tension and pain. Creating a nurturing environment with distractions, music, and other favorite items may also help to relieve or distract from the uncomfort.  Finally, cuddling, rocking, and heat or ice have all shown positive benefits.  Pain can also be managed with over-the-counter, mild medication first.  If the pain persists, a doctor can prescribe a stronger medication as needed.

By Grace Ison

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