Sandy Berenbaum LCSW, May Awareness LDA Guest Blog – Trauma, Loss & Lyme in Children & Adolescents

May Awareness LDA Guest Blogger

Sandra Berenbaum, LCSW, Circle

Sandy is a Licensed Clinical Social Worker, in private practice in Middletown, CT.  She has worked with adolescents and families since 1987, gradually realizing that many of the young people she saw had Lyme disease underlying their mental illness diagnoses.

As she referred clients for evaluation by medical practitioners who were Lyme knowledgeable, she became increasingly perplexed that mental health practitioners were not learning about tick-borne diseases.  Finding few who understood the type of psychotherapy Lyme patients needed, she decided that she would focus solely on kids and families with tick-borne and associated diseases in her practice. Sandy found that by understanding their complex illnesses, she could more effectively help them problem-solve, empowering them to move forward.

Sandy is a member of ILADS and an LDAnet Supporter of the Lyme Disease Association (LDA) and author of a section of  LDA’s LymerPrimer written for parents and educators.  She has been co-organizer of several Lyme disease conferences, is a member of, and was the Children’s and Mental Health Editor of the Lyme Times for many years.  Sandy has written many articles, given many community talks and conference presentations on Lyme, including six annual trainings for mental health practitioners with Vice President Dorothy Leland and Sandy co-authored the book:  When Your Child Has Lyme Disease: A Parent’s Survival Guide.   

Trauma, Loss, and Lyme Disease in Children and Adolescents

What is “Trauma”:
The Oxford Dictionary defines trauma as:
“A medical condition caused by severe shock, stress or fear, especially if the harmful effects last for a long time.”
The Oxford Reference Dictionary definition is:
“A physical injury or wound or a powerful psychological shock that has damaging effects.”

Lyme disease is, indeed, a very real trauma, physically, psychologically, and for many, spiritually.  I show some of the traumatic events children experience in the examples below:

Trauma #1:

Children with tick-borne disease symptoms have often seen multiple medical practitioners and received a variety of diagnoses.  When parents ask the pediatrician to evaluate their child for Lyme disease, the parents are often berated, and told that it could not be Lyme because:

  1. the child doesn’t have a swollen knee, rash or a positive test. Often their parents are told that their child has an “anxiety disorder,” “depression”, “oppositional defiant disorder (ODD)”, “conduct disorder (CD)”, or a slew of other mental illnesses. They are then referred to a psychiatrist, who fails to look for an underlying medical illness prior to prescribing a variety of psychiatric medications that are not at all helpful or have a paradoxical effect.
  2. there is no Lyme in their state. There are, in fact, Lyme and other tick-borne diseases in all 50 states. And those doctors that deny that fact haven’t even begun to understand these illnesses.
  3. the child is making it up to get attention, so the doc won’t “buy into the behaviors” by testing for tick-borne diseases, not even knowing that Lyme is a clinical diagnosis. Some pediatricians/other primary care doctors even tell parents they are no longer willing to provide medical care for the child they have been seeing since birth!  This form of “medical abandonment” can be particularly traumatic for the whole family.

Trauma #2:

Going to school and succeeding academically becomes an issue.  School “teams” push back against the child getting supports for school (Section 504 plans or IEPs), even after the school receives appropriate documentation from the child’s Lyme doctor. Teachers, school nurses and academic teams doubt that the child is ill – accusing them of malingering and parents of indulging their child.  The team may even be more dismissive to children who need a modified school day or homebound instruction due to sleep disturbance, profound fatigue, and other disabling symptoms caused by their illness.  Teachers, coaches, and even counselors who had been trusted adults in the life of the child turn on the child, no longer believing anything the child or parent/s say about the many facets of the disabling illness the child is suffering from.

Trauma #3:

The child is isolated from peers, family and friends.  If they are excused from gym, have a motor tic, or need to stay out of the noisy cafeteria, kids with tick-borne diseases are often bullied.  All too frequently, the school does nothing to stop the bullying.  Neighbors, extended family members and friends cross boundaries and interfere, further isolating the child as well as the parents.  Grandma and grandpa, who the child loves dearly, think it’s okay to tell the parents that their Lyme specialist is a “quack”, and that they should go to another doctor.   And they do this even when the child is in the room!  Extended family members are shocked that the parents aren’t “making” the child go to bed “on time” (as if kids with a brain infection can be legislated to fall asleep at a particular hour).

Being ill with a chronic infection, actually multiple chronic infections, is of course traumatic.  When I speak with parents, they often recite multiple diagnoses:  Lyme (sometimes more than one strain), babesiosis, bartonellosis (often several strains), PANS/PANDAS, neurotoxic mold (CIRS), and many others.  In itself, these illnesses are overwhelming for the child, as well as the family.  There are  multiple symptoms that vary from day to day – pain, difficulty sleeping, difficulty focusing and concentrating, sensory issues, eating disturbances, anxiety/depression, to name a few.  But that is only the beginning.

Trauma #4

Reports may be made to Child Protective Services. Adults, who the child and family trusted, decide that there is something wrong when parents leave no stone unturned to find answers for their children’s array of disabling symptoms.  Just the fear of being reported to CPS is ever present in the minds of many parents with kids with complex tick-borne diseases.  This trauma becomes a part of the child’s trauma as well, as parents take steps to avoid CPS referrals, or have to defend their parenting against a system that has little or no Lyme knowledge.  Even the home doesn’t feel safe to the parent, child, siblings.

Where are the losses the child experiences?

  • Loss of health and functioning of course comes first. Life becomes far less predictable day to day, as symptoms wax and wane.  There is also no known predictable end to the nightmare of chronic tick-borne diseases.  The doctors can’t tell the child and parents how long it will take for these children to return to healthy functioning.
  • Loss of control over their own schedule. Trips to doctors, as well as other Lyme literate practitioners: psychotherapist, neuropsychologist, physical therapist, other medical specialists.  Each day focuses on medications need to be taken, and probiotics, as well as other supplements. 
  • Loss of connections with school staff that made school a safe place to be. When teachers, administrators and counselors do not believe that the child is really ill, these kids do not feel safe reporting incidents of bullying, sexual harassment, or even physical abuse that happens to them in school or on the bus.
  • Loss of sports, music, clubs, and other activities the child loved. Without those activities, the child loses friends – the kids on the soccer team, in school orchestra, or their friends in other school clubs.

Children grieve these losses.  They also grieve those things that are more difficult to identify – the loss of the self-confidence they once had, loss of resilience.

What do these kids need from the adults in their lives?

  • It’s important for the adults to take a step back and look at the life the child has. They could then ask themselves the question “what does this child need from me?”
    • Compassion – whether the adults are parents, aunts and uncles, medical practitioners, teachers, coaches, the child’s friends’ parents, there is a role for all of them to play in helping the child with chronic Lyme, PANS/PANDAS, neuro-toxic mold, simply get through these tough times. For teachers, it is certainly challenging to have kids with Lyme in their classrooms, but if a teacher realizes how much more difficult it is to be  the child they are teaching, how can the teacher help but be compassionate?  If grandma puts herself in the child’s shoes, she will realize how tough it is for a child to be living with this illness.  What relief they can give to their grandchild and parents if they can spend time alone with their grandchild, a playdate for the kid, and a break for their parents! 
    • Understanding – Adults need to educate themselves about these illnesses. Understanding, in fact, leads to compassion!

When I first started my work with Lyme patients, in 1991, one year after I was diagnosed with Lyme, there were very few resources available for patients, and none that I knew of for parents.  Now there are many places to learn about Lyme – books, websites, newsletters, webinars, and even blogs!  Learn from the child’s parents what the manifestations of the illness are, not just in general, but with that particular child.

  • Support – Adults need to look at their particular role in the child’s life to determine the nature of the support they can give. At school, all members of the IEP or 504 team needs to examine what academic help the child needs, in order to provide them with an education.  Be creative.  One school principal allowed a student with Lyme to use her private bathroom since the child’s OCD symptoms included an aversion to the kids’ bathroom, not up to the level of cleanliness that the child could tolerate. This was not a preference, but a manifestation of OCD. Some school nurses have provided brief stays in their office, for children with debilitating headaches, or sensory issues, to get a break from the noise of the classroom or cafeteria. 

Extended family members can spend private time with the child. The adult and child can play fun games kept at the home of the grandma or others. By doing that, it gives parents and even siblings a much-needed break, while the child feels more connected with other adults that love them!

In my 30 years’ experience working with children with tick-borne diseases and their families, I have heard the stories of what they are going through, not only with the illness, but with the lack of understanding of the very people these parents and children counted on, prior to the child becoming ill.  The child’s symptoms, particularly neuropsychiatric symptoms, affect their functioning, leading to their becoming pariahs within the extended families and communities.  By giving these kids our compassion, understanding and support, we can make the dark and bumpy road a bit smoother and a lot brighter! 

[Note:  My thanks to Maggie Schaefer, RN, BSN, for your contributions to this blog!]

Sandy Berenbaum, LCSW
Middletown, CT

Co-author:  When Your Child Has Lyme Disease: A Parent’s Survival Guide