By Fred Diamond

On this week’s Love, Hope, Lyme podcast, LymeLight Foundation co-founder Phyllis Bedford shares five lessons she wishes she had known when her daughter became ill

When a child becomes mysteriously ill, parents often know something is wrong long before they know what it is.

The symptoms may not fit neatly together. Tests can come back normal. Doctors may offer different explanations. Meanwhile, a child who was once active and engaged may be dealing with pain, exhaustion, headaches, cognitive difficulties, digestive problems, or other symptoms that are difficult to explain.

For parents, the experience can be frightening, frustrating and extraordinarily isolating.

Phyllis Bedford knows that experience personally. Nearly two decades ago, her daughter was diagnosed with Lyme disease. What Phyllis and her husband, Scott Bedford, learned during their daughter’s illness ultimately led them to help create the LymeLight Foundation, an organization that provides treatment grants to children and young adults with Lyme disease.

When Phyllis recently joined me on this week’s Love, Hope, Lyme Podcast, I asked her: What do you know today that you wish you had known then?

Her answers offer an important roadmap for parents navigating one of the most confusing journeys a family can face.

Keep pressing on 

Phyllis starts off with trust your instincts as a parent.

“If you suspect something is wrong with your child, and a parent knows, keep pressing on,” she tells me. “Leave no stone unturned and do not be deterred.”

That persistence can become especially important when conventional testing and clinical evaluations do not provide an explanation for what a child is experiencing.

Phyllis recalls how families can find themselves moving from physician to physician looking for answers. When tests repeatedly come back normal, parents may eventually be told that their child’s problems are psychological or behavioral.

Her advice is to continue asking questions and looking for the underlying cause rather than focusing solely on individual symptoms. She also encourages families who suspect Lyme or another tick-borne illness to seek guidance from a Lyme-literate medical professional who can evaluate the complete clinical picture and recommend appropriate testing.

For parents, persistence does not mean believing that you already know every answer. It means refusing to stop asking reasonable questions when you know your child is not well.

Become your child’s advocate

Once Lyme disease enters the picture, parents can quickly become overwhelmed by the amount of information they need to understand. Phyllis describes the experience as essentially going to medical school without ever intending to enroll.

“You need to become your child’s advocate and become their voice,” she says.

That means educating yourself, preparing for medical appointments, doing research, asking questions and becoming comfortable speaking up when something does not make sense.

The complexity of tick-borne illness makes that particularly important. Phyllis notes that children diagnosed with Lyme may also be dealing with co-infections and that individual cases can look dramatically different.

One child may primarily experience digestive problems. Another may have significant joint pain. Another may struggle with headaches, confusion or neurological symptoms. Some children experience several of these simultaneously.

That variability is one reason parents may need to become active participants in their child’s care rather than assuming there will be one obvious path forward.

Lyme affects the entire family

“When your child is diagnosed, take a look at the siblings,” Phyllis says.

Through LymeLight’s work with families, she has seen situations where one child receives a diagnosis and attention then turns to another child with different or less severe symptoms. Sometimes a parent begins recognizing unexplained symptoms in themselves as well.

Phyllis also discusses congenital transmission and the need for greater awareness and research around Lyme disease and pregnancy. She believes obstetricians and families need more education about the possibility of transmission during pregnancy, particularly because a mother may have an underlying infection without realizing it.

For families already navigating Lyme disease, her broader message is straightforward: when one person receives a diagnosis, pay attention to what may be happening elsewhere in the family.

Find your community

Perhaps the most emotionally powerful advice Phyllis offers has nothing to do with a particular treatment or test.

It’s about isolation.

She describes entering the Lyme world as feeling like falling down the “Alice in Wonderland rabbit hole.” Suddenly, parents are dealing with terminology they have never heard before, medical questions they never expected to ask and a disease that people around them may know very little about.

That is why Phyllis believes community is essential.

“You may feel you’re fighting this battle alone, but you aren’t,” she tells me.

Today there are in-person and online support groups, social media communities, nonprofit organizations and other parents willing to share what they have learned. LymeLight itself helps connect families with resources and support groups in addition to its treatment-grant program.

No parent should have to become an expert on a complicated illness while simultaneously caring for a sick child without support.

Finding people who understand the experience may not solve the medical challenges, but it can make the journey considerably less lonely.

Give yourself permission not to have every answer

Treatment decisions can become complex. Parents may find themselves comparing different approaches and wondering constantly whether they are making the right decision for their child.

Phyllis remembers that feeling herself. Her advice now is remarkably simple: start down a path.

“You will not have all the answers, or you likely won’t have all the answers,” she says.

Make the best decision you can with the information available. Work with knowledgeable medical professionals. Pay attention to your child. Learn. Reassess. And give yourself permission to change direction when appropriate.

There is another reason Phyllis’s advice carries such weight.

The need for the LymeLight Foundation

While seeking treatment for their daughter, Phyllis and Scott encountered other parents in waiting rooms and IV lounges who were facing not only the emotional burden of a sick child, but also an enormous financial burden.

Parents talked about selling their homes, maxing out credit cards, selling possessions or moving in with relatives simply to pay for treatment.

Phyllis and Scott knew something needed to be done, so they created LymeLight and it began modestly. Its first fundraiser brought in $40,000, allowing the organization to provide four $10,000 treatment grants. Fifteen years later, Phyllis said LymeLight has helped 1,700 grant recipients across all 50 states and distributed $12 million.

On September 14, Phyllis and Scott will be honored at the Project Lyme Gala in New York City for their contributions to the Lyme community.

It is fitting recognition for two people who took one family’s painful experience and turned it into help for thousands of others.

Eighteen years after beginning this journey with her own daughter, the message she wants other parents to hear is not that she discovered all the answers. It is that you keep pressing on.

Advocate for your child. Educate yourself. Find knowledgeable professionals. Seek out community. And when the road ahead seems overwhelming, take the next step you can see.

Sometimes that is enough to get you to the step after that.

Learn more about the LymeLight Foundation and how to apply for a grant. 

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia. He doesn’t have Lyme but wrote his popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” to understand what Lyme survivors go through. The book is available on Amazon and the e-version (pdf) of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.