I recently received a phone call from a mom whose two teen-aged sons are terribly ill with Lyme and coinfections. In addition to all the medical and emotional issues her family is dealing with, she’s also concerned about schooling, since one of her sons is too sick even for homebound instruction.

I recently received a phone call from a mom whose two teen-aged sons are terribly ill with Lyme and coinfections. In addition to all the medical and emotional issues her family is dealing with, she’s also concerned about schooling, since one of her sons is too sick even for homebound instruction.

In the conversation, I happened to mention Sandy Berenbaum, a therapist who specializes in helping the families of children and teens with Lyme disease. The voice of the mom on the phone perked right up. “Sandy Berenbaum?” she said. “I’ve never talked to her, but I’ve scoured the internet to find every article of hers I could find. They’ve been an enormous help.”

I’ve been fortunate to be familiar with Sandy’s work for several years now, and like the woman on the phone, I’ve found it tremendously helpful. So you don’t have to scour the internet, I’m pulling together links to Sandy’s articles right here.

First, some background. Sandy Berenbaum, LCSW, BCD, has devoted many years to children and adolescents with Lyme disease. In addition to seeing young patients and their families in her Connecticut and New York offices, she maintains a telephone practice, consulting with parents of Lyme children from far-flung parts of the country. She’s Mental Health Editor and Children’s Editor for the Lyme Times, a member of ILADS and CALDA, and a staunch advocate for the rights of all Lyme patients, especially children and teens. She also takes a special interest in how schools handle students with Lyme.

She knows what she’s talking about—not only because of her professional training and experience, but because she herself struggled with undiagnosed Lyme for six years before finally getting properly diagnosed and treated. She knows what family members go through when the Lyme patient herxes from antibiotics—because she’s gone through it herself. She’s familiar with Lyme’s effect on family relationships, because she’s lived it.

Some articles are available on Sandy’s own website, LymeFamilies. In her introduction to Lyme disease, she points out that although Lyme is a medical problem, it sometimes calls for non-medical strategies to help the family cope. She lists the following things a family with Lyme can gain from working with a Lyme-literate psychotherapist:

• An understanding of the nature of the illness and strategies for dealing with it.
• The ability to cope with the flair of symptoms and side effects of the medications, while functioning at the highest possible level.
• The ability to advocate on the child’s behalf in school and in the community.
• Enhanced communications and problem-solving, within and outside of the family.
• The ability to establish boundaries between the Lyme patient and those who lack an understanding of their illness.

If this is a topic that hits close to home with you, you’ll get a good overview of what Sandy is about by reading Marcus Cohen’s interview with her in the Townsend Letter for Doctors and Patients.

Families with desperately ill children often feel like they have fallen into a deep, dark hole with no way out. For many people, Sandy Berenbaum has appeared with a great big flashlight to help them find their way of the hole. What a resource she offers to the whole Lyme community.

Sandy has agreed to periodically offer guest blog posts in TOUCHED BY LYME. Her first posting immediately follows this one, and is entitled Kids Need to Feel Safe and Protected, and So Do Their Families.