Other Helpful Tips

Other challenges may arise that are not anticipated. Every child and every family is special and may have special needs. Ask your health care team about any issues that have not been mentioned here. In addition, here are a few things to consider:

  • Clothing: Your child may gain weight or lose weight as a result of treatments. Some children develop sensitive skin, where some fabrics are irritating. Have a supply of loose-fitting clothing that is easy to get on and easy to remove. If your child has muscle weakness or is not able to stand, he/she may not be able to dress himself/herself like he/she used to. Clothing with elastic around the neck and leg openings is particularly helpful. You may also need to have several sizes of clothing available for times when your child gains or loses weight. Buying new clothing can be expensive, especially when your child may not be the same size for any length of time. Consider visiting second-hand or discount clothing stores to get basic items and save more expensive clothing purchases for special occasions. If family and friends ask how they can help, consider asking them to provide gift cards for clothing stores that your child might like.

  • Financial worries: The costs of treatment and medical equipment can be substantial, even if you have great insurance coverage. Most insurance companies do not pay for everything your child will need. Anticipate out-of-pocket costs and try to budget for them, if possible. Ask your social worker if your child might qualify for Supplemental Social Security Income (SSI) or other possible sources of additional funding to help with some of the costs. Consider letting family and friends who are asking what they can do for you, to help with fundraising events to raise money for these unanticipated medical and personal expenses. In addition, many hospitals charge for parking and meals in the hospital’s cafeteria and these can add up after a while. Extra funds can come in handy for these types of expenses, which are usually not covered by insurance.

  • Durable medical equipment: Equipment that your child needs is called durable medical equipment (DME). It is important to know this term, because this is how benefits for payment of equipment are determined by your insurance company. Your nurse should review any equipment that your child might need at home, but most equipment is provided by an outside company that your insurance company recommends. The equipment that is used in the hospital may differ slightly from what is delivered to your home. Make sure you are given instructions about how to use the equipment, how to troubleshoot common problems, who to call 24 hours a day in an emergency, and who to call when you have routine questions. You should also ask to have a home care nurse come for a few visits to help you learn how to use any DME. If the equipment company does not provide a set of written instructions for each piece of equipment, ask for them. Keep this information in a binder or notebook in a place that is easily accessible to anyone who might be caring for your child. Be sure to put the emergency phone numbers for each company that provides DME in the beginning of the notebook or in a place that can be found quickly, if needed.