Dear Families,

We all want to make our children feel better when they are sad, scared, sick, or in pain. The feelings of helplessness and guilt that often surround parents and caregivers of chronically ill children is immense and omnipresent. However, knowing how to identify the best individualized supports, interventions, and treatment team for your child in combination with validation, love, and support from you can make ALL the difference.

Some who are new “medical parents”, so to speak, may not be aware of the support groups (in-person or virtual), specialized camps, latest research, and products out there to support their children and provide some relief to their child. Not to mention relief from financial and occupational stress for parents and their other children.

It is helpful to know “what to say” and “what not to say”, who to ask for support and advocacy along your journey, and how to take care of yourselves, so you may care for your child. I hope this newsletter can provide some information, understanding, optimism, and guidance. As usual, you got this, but don’t be afraid to ask for help along the way.

Warmly,
Rebecca A. Fontanetta, PsyD, ABPdN
Board-Certified Pediatric Neuropsychologist
Founder, The Neuropsychlopedia

What Should I Keep in Mind As A Medical Parent?

Despite their (generally) good intentions, many doctors struggle to understand the experience of patients, even when well-meaning. And when doctors don’t believe your pain or properly diagnose you (or your child), you lose trust in the medical system. Some have felt as thought they are nothing but an “interesting medical case” to others and do not feel seen.

Many have actually expressed that the emotional side effects of chronic illness are worse than the physical. For example, grieving of a self/body that may never be the same and struggling with rejection from peers and feeling different. Some children experience significant differences in their physical appearance which then causes emotional distress (wheelchair, weight loss, hair loss, swollen etc). Many children will attempt to hide their illness or pretend everything is okay so they can participate socially and not feel weird/needy etc. Some children may feel they did something wrong or sinned to deserve their illness.

Many have described experiencing excessive consoling by others, which makes them feeling uncomfortable or responsible for others’ negative feelings. Some will receive “thoughts and prayers” or hear things like “you’re so strong” or “everything happens for a reason” which can be frustrating and invalidating. Being called “inspirational” does not always feel good, as there is no actual choice being made. Many children also feel invalidated by people (especially adults) who do not understand “flare-ups” because they have seen the child as “normal” much of the time so they must be okay.

What Should I Be Aware Of If My Child Is Hospitalized?

In terms of the experience of long-term or chronic hospitalization, these children have a 12% higher risk than non-hospitalized children, in terms of developing an emotional disorder. They often experience isolation and loneliness in hospital and may have to face death or fear of affecting others lives because of their illness or potential death. The areas that most affected quality of life was family discord/stress, and inability to participate in school/sports/hobbies.

Not surprisingly, any invasive or unexpected medical procedure can be especially traumatic for those with fear of needles or doctors. Up to 25% of those who experience a significant medical event experience illness-induced PTSD. In fact, placement in ICU results in 5x risk for PTSD, highest risk in adolescent females because of parental separation, disturbed sleep, day/night reversals, constant noises, painful procedures, strangers taking care of you, unable to communicate, loss of privacy and constant touching, and side effects of meds. The prevalence of post-traumatic stress following hospital admission in children ranged from 35-62% and anxiety ranged from 7-40%, which are both associated with poorer quality of life and increased health care utilization. From a physical health perspective, when children are in the hospital they are more vulnerable to other illnesses that other may never be exposed to because of hospital/rehab stay. Many experience inconsistent sleep patterns, acute or chronic pain, and fatigue, which can exacerbate cognitive and behavioral problems.

How Can I Support My Child (and myself)?

While we may not be the ones who are capable of solving for a child’s physical health, there are several things parents and providers can do to support a child’s emotional health and overall quality of life. Try to give your children choices even about tedious things so they have some semblance of control. You can decorate hospital/rehab environment with things from home: towels, sheets, laundry and other fun/positive items. Try your best to bring fun and humor into the situation whenever possible. It may be helpful to make “saying yes” a priority because you may have to say “no” to your child more than you expected in the coming years.

It may be helpful to ask your child how you can help or support them, make them feel safe, empowered, comfortable and what bothers them or causes worries. As much as is possible, try to keep things as normal as possible for other children while acknowledging seriousness of the situation. It can be helpful to assist child in answering questions about their illness to peers, teachers and family members. It is often comforting to communicate with others who have similar lived experiences and can appreciate the unique experience and nuance of little things. At the same time, it is also important for the child and family to know that just because someone has the same diagnosis or other similarities does not mean they will have the same outcome. If parents can find hope, support, and strength to give to their child, significant benefit for their child, but incredibly hard to do, especially without financial and psychological support. Strong social networks have been shown to be very protective of mental health, increased resilience, independence, and coping strategies.

More practically, there are many products recommended by medical families that can make transition to hospital easier (e.g., wagons for transport of items, collapsible items, cupholder for IV etc.). Try to support and nurture relationships between yourself, your child and the hospital staff. Try to explain all procedures and tests to your child on a developmentally appropriate level with appropriate terminology. There are never too many questions for the medical team. It is often helpful to create a list of symptoms and detailed history for any new doctors or medical professionals- make sure you request and hold onto all medical records. Keep in mind that teaching hospitals are often more equipped to deal with unusual, complex, or chronic conditions. Consider using a child life specialist (help kids to navigate illness and hospital stay), social workers and case managers for support and ideas. Some treatments or visits can be done at home, even without significant financial burden. Don’t be afraid to get second opinions but also accept when there is consistency in information. Consider requesting a patient advocate if necessary if do not agree with medical care/plan.

It may be helpful for parents, siblings and/or the child with chronic illness to join a support group for their specific illness. Illness-specific camps can be very helpful for children and/or their siblings to create deeper, meaningful connections with peers. Other helpful resources include: Angel flight, Rally foundation, Tough2gether, St. Baldrick’s foundation, B Brace, The Assistance Fund, First-hand Foundation and many others that assist with grants, support, and information.

Hope and Support