The #PainBox Program is Avalon’s original Vision. The program offers emotional and psychological support to children and their families beginning painful medical treatments for rare diseases, specifically HPP (Hypophosphatasia).
The treatment for HPP that was approved by the FDA at the end of 2015 is called Enzyme Replacement Therapy (ERT). It is an injectable enzyme formulated to replace the absence of Alpha Phosphatase in patients with Hypophosphatasia. It is usually monitored by endocrinologists. Many patients have a variety of reactions to the introduction of this enzyme to their system. Most of those reactions are painful to a varying degree and can last several weeks per injection. Some patients inject 6x/week, other 3x/week. Some have 1 injection/ session- some more. Eventually, the patient’s body will assimilate the medicine more easily; but the first 75 days are critical before seeing major results. By day 90, most patients have adapted to the injections physiologically as well as mentally and emotionally. Getting through the first few months is KEY. That is the critical time that PainBox can help!
The “#PainBox” protocol works like this: Parent/s submit a profile of the patient and family to us. Our kc4k Board selects a team leader for this patient and family and they shop for the #PainBox contents customizing it to the patient’s interests, age, gender, etc. Parent/s are given the instructions/suggestions of how to use their customized #PainBox with their child. They tell them that there are surprises inside that will be given to him/her either once/week or once/injection. These positive reinforcements are to ACKNOWLEDGE in a very real way the courage and strength the child is building with every shot- both in their mind and in their body. They learn that it is called the “PainBox” because we aren’t going to pretend it isn’t painful. It is a way to help the child move into a place of acceptance and build determination and a strong will to get through the first 90 days. After that, the benefits are so wonderful that they can reconcile the pain him/herself. By then, the initial reactions have most likely lessened in pain and severity as well.
During any time in the process, we can also network patients and their families with others for support. Our #PainBox Program Director can refer families to professional Life Specialists and other counselors for deeper support. Sometimes patients talking to other patients (especially children) have a way of lifting each other through it. Avalon has been a patient support to many others; talking with other children having problems with doing the injections. Somehow talking with someone that gives them encouragement and understands truly and deeply helps that child move forward without as much despair and fear.
ERT gives the patient the abilities to use their body like they never have been able to. Avalon was unable to run, jump, even walk without gait issues. She used a wheelchair part time. There weren’t many places we went without having her electric scooter or wheelchair with us. It replaces the fatigue that plagues these patients with energy and focus. Life goes from black and white to technicolor once Strensiq is used for a few months. The #PainBox is used to discourage any despair during the beginning of treatment. For Avalon, within 6 months she was on the volleyball court and enjoying sports for the first time at age 10!
The Avalon Foundation is funded to make the PainBox Program available for infants, toddlers, and children up to age 18 who will be starting ERT for HPP. The Box will contain rewards for 90 days along with directives for caregivers on how to continue the program if needed. We also provide extended support past 90 days when needed.
We are constantly working with mental health, wellness, and educational professionals to determine how to adapt this program in the most psychologically and emotionally supportive way.
We look forward to offering this program to other children experiencing painful medical treatments for rare disease as funding increases!