Practical Care Issues of Children with DIPG
There are several other issues that may arise as you take your child home. Some children have problems with balance and walking, communicating with others, anxiety or emotional concerns, or central venous catheters or tracheostomy tubes to care for. This section will discuss how to handle these challenges and discuss other concerns for managing day-to-day life, such as traveling with your child and practical tips.
Some children with DIPG have ataxia (poor balance) or difficulty walking due to muscle weakness. Physical rehabilitation with physical and occupational therapy may be very helpful to help strengthen your child, help your child learn new ways to walk or be mobile with his/her physical challenges, and help you to learn how to safely manage your child at home. Ask your doctor or nurse practitioner to recommend a physical medicine and rehabilitation (PM&R) doctor for an evaluation to help plan the best therapy approach for your child. Inpatient rehabilitation services may be helpful, and outpatient or in home services may be available.
Younger children can be carried, but it is helpful to have a good stroller for longer distances. Remember that your child will grow, and the stroller you had when he/she was an infant or small toddler may not be safe for him/her as he/she grows. You will want to have a sturdy stroller to hold any additional equipment or supplies your child might need. There are several companies that make heavy-duty strollers for medically fragile children. Ask your nurse or social worker to help you find the most appropriate stroller for your young child. Some insurance companies will pay for this as a medical expense.
Older children may benefit from having a wheelchair. Wheelchairs come in many different sizes, so there is one that is the right size for your child. Ask your doctor or nurse/nurse practitioner if they think a wheelchair might help your child be able to move around better. Many parents feel a wheelchair is very helpful because they can take their child outside and to places they like to visit.
Mobility concerns are not just related to walking or transportation from one place to another. Your child may also have difficulty standing or sitting, which can impact daily activities such as taking a bath or shower, watching TV or playing games, or even going to the bathroom. Discuss with your nurse/nurse practitioner what strategies you can use to help your child manage his daily life. Rehabilitation with physical and occupational therapy may improve strength and balance so your child is able to do more things independently, but in the meantime you may find some assistive equipment particularly helpful. The PM&R team may have even more suggestions, but some practical items to consider are a shower or bath chair, rails on bathtubs or showers, walkers, canes (there are many different types), hospital beds at home, and bedside toilets. You may want to consider moving your child's bed to a location in your house that is easier for him/her to manage. For example, you can place the bed in a location where your child does not need to go up or down stairs, or you can place it closer to a bathroom.
Handicap parking permits
It may be possible for you to get temporary handicap parking tags or a placard for your car to help you park closer to the hospital and other places you take your child. This is particularly helpful if your child has impaired mobility. You can obtain an application for handicap parking from your state Department of Motor Vehicle Administration. Many applications are also available online. There is a section for you to fill out with the information about your car and there is a section for your doctor or nurse practitioner to fill out to verify that handicap parking permits are appropriate for you. Usually a temporary permit is valid for 6 months but can easily be renewed. A placard is a good option if you drive multiple cars, because it can be moved between cars.
Traveling with children can be challenging for any parent, but it may seem overwhelming when you have an ill child. Travel is generally quite safe and your doctor or nurse/nurse practitioner can help you find ways to make things easier. The following are some helpful tips that might help traveling go a bit smoother.
- Have the name, address, and phone number of a local hospital in the area where you will be traveling, just in case your child needs medical attention.
- Ask your doctor or nurse practitioner to write a letter that summarizes your child's history, the current treatment and medications your child is taking, and how to contact him or her in case of an emergency. This can be helpful in case you have to go to a local emergency room or visit a doctor while you are traveling. If your child requires opiate medications or injectable medications and you will need to carry syringes and needles, ask your doctor or nurse practitioner to write a letter of medical necessity for you to hand carry during air travel.
- If flying, take extra medications with you and pack at least a few days’ worth in your carry-on luggage in case your luggage gets lost. If medication needs to be refrigerated, remember to take cooler packs and notify flight attendants that you need to refrigerate medications if it is a long trip.
- Call the airline, train, or bus company in advance and let them know about your child's special needs. Ask for seats that have extra leg room. Also let them know if your child has a wheelchair, walker, or other medical equipment. When you arrive at the airport (or train or bus station), check in early and again remind the attendants of any special needs your child has.
- If your child has other medication equipment (e.g., suction machine, oxygen, feeding pump), ask your nurse or social worker if there is a way to have this equipment supplied in the location where you are traveling so you don’t have to carry all the extra equipment with you. Sometimes this is not possible, so arrangements can be made to transport your equipment with you as needed.
- Plan activities during the part of the day when your child usually feels best. If your child needs to rest frequently, remember this and build that time into your daily vacation plans.
- Plan your meals around your child's special dietary needs, if they have any.
- If possible, take an extra person with you to help with the logistics of travel.
- Keep things simple! Many family vacations create wonderful memories, but not if everyone is stressed. Build in time to relax and take things slowly so your child does not become overly tired. Cranky children are no fun to travel with.
- Consider having friends and family travel to you. If travel is being planned to visit relatives and friends it might be less cumbersome for your child and family if visitors travel to you.