Introduction to Parenting Children with Chronic Infection

Introduction to Parenting Children with Chronic Infection

In the past several years in practice, I am finding that young children with Lyme disease, PANDAS, etc are very much misunderstood as are their parents. In this section, I will be introducing the different aspects of parenting a child with chronic infection. Lyme disease and other infections can create neurological, behavioral and mental health related symptoms. This blog will provide discussions about many of these issues.

I know it is difficult for one to imagine what it is like to parent a child who is experiencing chronic pain and fatigue which limits their activities, from having to be carried often to being unable to play outside. Maybe they stop riding their bikes, dismiss playing at the park, want to watch a ton of tv or spend their time playing video games...a parent with a chronically ill child often parents differently than they ever thought they would. It can be a difficult balance.

School and social situations often become a significant challenge. A child with Lyme disease can struggle with executive functioning deficits. Some find it hard to do simple chores, complete homework on their own and keep a clean room. This is more pronounced than one might expect developmentally. Sometimes relatives or friends don't really understand and verbalize an expectation of chores and tasks that you know are not really doable. They fail to recognize the significance of specific behaviors which you realize indicate pending trouble. Getting them to understand these behaviors, stop judging your neurotic vigilance and avoid applying pressure on your child to meet their own expectations can be a challenge. 

Emotional outbursts and lability are common in young children with infection. Their senses are often overloaded, making eating out or visiting other noisy environments difficult to manage. Social situations may become troublesome when your child might do something dreadful to another child. Your child, when in an infection spiral, may actually scare you. If children would react to over stimulus gently and easily that would make it easier, but they often don't. Overstimulation, unbalanced blood sugar, over fatigue can all cause meltdowns. Brain inflammation can create heightened anxiety, poor impulsive control, lack of judgement and OCD type symptoms. Emotional regulation becomes an impossible task. Many parents feel at a loss as to what they can do. 

For several years I worked closely with a physician who treated Lyme disease, PANDAS and other infections impacting the brain. She taught me a great deal on the medical side of these infections and I studied tirelessly to understand the clinical implications for my clients as well as my family . This strengthened my abilities as a clinician, as well as guiding me through something very painful. Parenting my own children and watching their little brains being invaded by Lyme, Bartonella, Strep and Babesia. I know how hard life with infection can be because I not only see it often in my practice, but have also lived it as a parent at home.

I hope this section of the blog and the way each of these topics are explored helps you feel that you are not alone. Providing a place to feel understood and validated is the goal..maybe it allows you to understand someone you love a little better or helps you feel compassion where you didn't before. Lyme, PANDAS and others are complicated diseases and impact every area of our lives. Although you will not be able to identify with all symptoms, you will probably feel that many are familiar. Each entry will be packed with informative ideas and tools to help you and your PANDAS/Lyme literate team navigate a difficult disease with more confidence and a sense of hopefulness. Please browse the available topics now and bookmark and come back later for more!