• Work with your doctor or infusion clinicians to make sure the location of the infusion will meet your child’s needs. Some children, for instance, will feel more comfortable in a private room. Others may benefit from the normalization that comes from seeing others undergoing similar treatment. Arrange for whatever you think will work best for your child ahead of time.
  • Not all infusion nurses are skilled with pediatric IV starts. You may have to inquire with several infusion companies in order to find a nurse who can easily start your child’s IV. Finding a skilled pediatric nurse will be well worth your time and effort.
  • Hydrate, hydrate, hydrate. For one to two days prior to the infusion as well as the morning of the infusion, increase your child’s fluid intake. This will lessen the side effects of the IVIG and make it easier for the nurse to start the IV without multiple sticks. Continuing to focus on hydration in the days following your child’s infusion will help prevent headaches. Increased salt intake can also make starting the IV easier.
  • If your child is extremely fearful and anxious to the point of preventing administration of IVIG, some physicians will prescribe an anti-anxiety medication.
  • Fear is relieved for some children by explaining that the IV is more like a “straw” rather than a needle. The Internet is full of images and videos of children and pets receiving IVs. You can also share a video of a child explaining IVIG for PANS. Some infusion companies provide stuffed animals with IV supplies so children can become familiar with the process ahead of time.
  • Wrapping the hand or arm in a warm, wet towel about 10 minutes prior to the infusion will make it easier for the nurse to successfully start the IV.
  • Numbing cream can make the child more comfortable and less fearful, however, it can also make it more difficult for the nurse to successfully start the IV which can lead to greater fear and anxiety later on.
  • Infusions are long. Be prepared with meals, snacks, games, videos, and media to keep your child busy. While children can get up and walk around during their infusions, some are tired and prefer to lay low. Let your child take the lead based on how he or she is feeling.
  • Especially in an infusion clinic or with a home health nurse, observe to be certain your child is getting his or her full dose of IVIG. From personal experience, some nurses will leave too much product in the bottles. There will be bubbles left in the bottles but should not be liquid left over beyond that. Know how long the infusion should take based on the flow rate.
  • Be on the look out for headaches. Have a treatment plan in place with your doctor for addressing pain post infusion.