Meet the Lyme Disease Experts

Sandy Berenbaum, LCSW, BCD: When Lyme Hits School-aged Kids

Sandy Berenbaum, LCSW, BCD: When Lyme Hits School-aged Kids

Sandy Berenbaum is a Licensed Clinical Social Worker, with a psychotherapy and
family therapy practice in Southbury, CT and Brewster, NY. She is a graduate of
Temple University, and received her MSW from Adelphi University. Her
professional experience working with Lyme disease patients and their families
goes back well over 20 years. Sandy has written and spoken widely on Lyme
disease. She is a member of ILADS and has given several presentations at ILADS
annual conferences. Sandy serves as the Children’s and Mental Health Editor of
the Lyme Times, a publication of lymedisease.org, and has served as consultant
on various Lyme Research Alliance and Lyme Disease Association projects. She is
on the Advisory Board of Lyme Research Alliance, and is an advisor to the
Ridgefield Lyme Disease Task Force. More information can be found on her
website: www.lymefamilies.com

In a study by the CDC that analyzed private insurance claims from 2001 to
2010, the highest rates of Lyme disease diagnoses were in children aged 5 to 9
years of age. The effects of tick-borne disease upon school-aged children can
be complex and far-reaching, with cognitive issues and social isolation. The
following interview with Lyme-literate Psychotherapist Sandy
Berenbaum illuminates some of the issues facing parents and children with
Lyme disease.

Tell me a little about your work with families that have Lyme?
My background was in working with teenagers, first in a residential center and
then in private practice. I got sick with what turned out to be Lyme disease,
and spent six years trying to figure out what was wrong with me. Once I was
diagnosed, in 1990, I called a friend who was a doctor. He also had Lyme, and
he led me to a Lyme-literate physician and to my first medical conferences on
Lyme. At that time I was struggling with how my brain had suddenly
disappeared after I got sick, so I knew personally that this disease causes
cognitive problems and affects decision-making. So I thought maybe some of
these kids I was seeing – who had school issues, behavioral problems, family
problems, and anorexia - maybe some of these kids have Lyme disease.
So I continued to go to conferences and I realized how easy it was for a
mental health practitioner to come up with a mental illness diagnosis and miss
the underlying medical cause. I developed a one-page screening protocol for
mental health practitioners to help determine whether to refer a client to a
Lyme-literate doctor for a complete evaluation. I was appalled to find that
every single kid that I thought had Lyme actually did. One girl had three
hospitalizations for anorexia before she came to me; turned out she had Lyme.
I saw kids with substance abuse issues who were self-medicating for pain who
also had Lyme. Issues related to school behavior, attendance, and ability to
successfully complete their schoolwork - Lyme disease was the cause for so
many children!
Since I moved to Connecticut nine years ago, I’ve had an all-Lyme practice. I
do telephone counseling with people in other parts of the country, although I
won’t work with kids over the phone. Primarily, I see kids, adults, and families
in one of my offices - Southbury, Connecticut or Brewster, New York.
The focus of my work is on problem solving. The focus of my work is on
helping people cope with this disease, helping people find ways out of feeling
trapped by illness. I have a strong belief in the importance of establishing
boundaries – respect for the boundaries of other people and protection of one’s
own boundaries. Anyone with a history of years of misdiagnosis can tell you
stories about doctors and in some cases extended family members that decide
what’s wrong with them even when the patient or family knows that the loving
family member or professional is leading them in the wrong direction, ignoring
the medical cause - Lyme disease. I help parents and patients and even kids as
young as eight years old understand what boundaries are – even if I don’t use
that word with little kids – and I help them protect their boundaries. That is
one of the roles I see with the mental health practitioner.

Could you give me an example of a boundary?
So a kid might say, Johnny’s been my best friend since kindergarten, but he
says I can’t be that sick because I look good - but I can’t go to school. So I’d ask
the child: “What does your friend know about Lyme disease? Look at you, you
even know what a spirochete is.” (I’ve had little kids describe to me – even
better than some adults do – what a spirochete is.) “You can just tell your
friend: I’d love to play Mindcraft with you. Can you come over and play on the
Wii together? But I don’t want to talk about Lyme, my Mom’s handling that.”
Can you see how empowering that would be to an eight-year-old? That’s an
example of establishing a boundary. That kid’s learned something that may
come in handy years later, in any number of ways.
Adults often run into problems with extended family members, even
grandparents, who say, You know, I just saw someone interviewed and he’s an
expert from a major medical center . . . Often the mom has done significant
research, talked to other people, established support networks. It’s really not
the grandparent’s place to get into areas they weren’t invited. So rather than
getting into what was said by the major medical center, you can say, “Mom I
appreciate your love and care. What I could really use - since I’m pretty
overwhelmed with managing the house and taking my child to doctors - is if you
could make meals for a while, even a couple of meals a week, or if I could give
you a grocery shopping list; that would be really helpful.” Don’t get defensive
or question the credibility of the medical center that was referred to.

What if it’s a spouse who refuses to acknowledge that it’s a disease that’s
affecting the child, or is dismissive about it. What do you say?
That’s a big problem that I see a lot. It’s usually the mother that’s in the
trenches with the child. I’m not being sexist; this is my observation. The father
is usually working really hard to pay for this expensive illness. I’ve had mothers
that had graduate degrees and Wall Street careers and they’ve had to leave it
all to care for their child. So the mother is the stay-at-home parent because of
need. That works out well if the father allows the mother to be the decision
maker. I’ve seen fathers who will say, she’s doing a great job, I really trust
what she’s doing, and I really appreciate that I don’t have to do the research.
When you don’t have that, I suggest inviting the father to come for at least
one session. Or, if I’m working with the mom over the phone, I invite him to be
involved via conference call or speakerphone with a telephone counseling
session. I pay a lot of attention to what’s going on with the parents. Then if
the father’s unwilling to come, I work with the mother towards appropriately
dealing with her husband over how to manage the child’s illness. It’s so easy to
get defensive with a spouse. If a husband says I want you to take our child to an
infectious disease doctor, I’d have the mother say, “What is the evidence that
makes you suggest going to an infectious disease doctor? Show me the
documentation that you’re looking at.” You can have a mother suggest that her
husband comes to a support group meeting. Have them come and hear what
other people have to say. If a husband keeps pushing for an IDSA doctor, I’d
have the mother say: “If you want me to take the child to another doctor, I’ll
do that but it must be somebody that understands this disease. How many
Lyme conferences has the doctor attended?” So you challenge him on the
source of the information. Those of us who are Lyme knowledgeable know that
an infectious disease doctor is usually the wrong direction.

Have you found that educating family members is the best way to go when
you have this disbelief or denial about Lyme disease?
Yes and no. If they want to be educated then I suggest - as with the schools -
you don’t overwhelm them with literature. Carefully choose what you want
them to read. They will only have so much time and interest. Pick one or two
articles that are relevant and highlight what’s important for them to read.
The primary caregiver may feel trapped. They need to have choices and they
need to have boundaries. The spouse of the primary caregiver doesn’t want to
feel trapped either, and they may feel trapped by the expense of the illness;
and there may be more than one person with Lyme. You don’t want to further
trap the spouse by forcing them to read a 20-page article.
Say you have a child or young adult with cognitive impairment and focus and
concentration issues. So you pull up Dr. Bransfield’s article on cognitive
impairment or Tager’s excellent article on her studies of Lyme and cognitive
impairment in kids, and you highlight the parts on processing speed or
whatever the issue is, and you say: “Take a look whenever you have a chance.”
Keep your tone neutral. “The processing speed issues, it’s no wonder that our
child can’t finish the test on time.” Use messages that are easy to digest.
(Links to these two articles can be found at the end of this interview.)

Let me go back for a second to what you said about how many children you
saw had Lyme. What clued you in to that? Are there certain psychosocial
symptoms?
I used the Berenbaum Lyme Disease Screening Protocol, which is a one-page list
of seven or eight symptoms. Mental health workers can use it to
determine whether to refer a client to a medical doctor when there’s a
suspicion of Lyme. I do not diagnose Lyme. I am a licensed social worker. I may
be passionate about Lyme, but I have my own professional boundaries. Now,
there are times when I think a primary care doctor is wrong, but that doesn’t
mean I’m diagnosing. I’m referring.
The most important item on that list is an onset of symptoms at a discreet
point in time. Doctors will ask: When did the headaches start? When I had
Lyme along with those headaches I was losing cognitive ability. That’s a
common thing, but the cognitive problems are more subtle. I believe that
psychotherapists have both the time and the experience to look at the distinct
point in time when the school issues or cognitive issues came up. With a child, I
will do an intake with the parent and will ask the parent: What was the child
like before the headaches or knee pain? What did teachers say about the child
before the illness? Was their work in on time? And then I get a subjective
picture. I have the time to pay attention to that whereas a doctor does not. So
during that first interview with parents, there is so much time that can be
spent on that one item about the onset at a discreet point in time – besides the
headache, the swollen knee, the stomach ache.
I believe mental health practitioners who are practicing in Lyme endemic areas
need to understand the medical stuff and the science. My colleagues in the
mental health field should be attending Lyme Disease Association (LDA)
conferences. There is a wonderful LDA conference coming up in Providence,
Rhode Island, during the weekend of May 2 and 3, 2014. One of the speakers is
Dr. Sheila Statlander, a Lyme-literate clinical psychologist with a practice in
Boston. She has a deep understanding of Lyme disease, and will address the
mental health issues.
A great opportunity for professional education is the ILADS annual
conference. This year it’s going to be in Washington D.C. I encourage mental
health practitioners to attend the ILADS conferences, to learn about the
disease, and to meet other psychotherapists who are struggling to help Lyme
patients deal with the complexities of this disease. (A link to both the LDA and
the ILADS conferences follows this interview.)
These kids are drowning because the school doesn’t know how to educate them.
When you’re working with kids with Lyme, it’s very rare that there isn’t a
significant school component. Many of these kids have undiagnosed learning
disabilities caused by Lyme. I believe that therapists should understand IDEA,
which is the umbrella law, the Federal law on special education, and Section
504, which is the civil rights law that pertains to disabled children. A
therapist should be as active as a parent needs the therapist to be in dealing
with the school. In some cases I go to school meetings. With telephone
counseling, I’ve been invited to participate via telephone conference. Some
parents don’t need me to attend meetings but they may need a certain amount
of coaching on how to deal with the school, what some of the school issues are,
and where to find books and websites that can give them direction and help in
the process of advocacy.

Does that change depending on the age of the child? Say, with a young adult
that’s college bound?
If there is sufficient documentation that indicates a disability, then colleges
must comply with disability law. Significant cognitive problems can interfere
with a student being able to succeed in school without help. Often I work with
the parent and the young adult on a few issues related to college choices.
Distance is an important issue with kids going off to college. Say a kid who lives
in Ridgefield, Connecticut is looking at schools in Chicago and L.A. If they get
sick, they have to drop out of school. If they’re looking at a school in
Washington D.C., then a parent may be able to intervene, help them find a
doctor, get on a medical treatment plan, and they may not have to drop out.
So, D.C. is a better option than L.A.
If they crash medically while living in the dorms, and they’re close enough to
home, they can move home and commute, and maybe go on a part-time basis.
So, a school like Fairfield University or Wesleyan or Sacred Heart or a state
school is close enough. In Connecticut we’re lucky, there are a number of good
schools.
Some kids, especially those that have been homebound in high school, need a
gentler transition, and a good start is a community college. Some go for one
year and transfer, some get an associates degree and then transfer to a four-
year school. Examining options with young adults for education might protect
the outcome for the kid, versus just looking at the dream that the child has.
One of the other factors that kids and parents should look for is how good the
disability office is for putting supports in place for kids with any kind of
cognitive impairment. If an incoming freshman can only get into English 101 at
8 o’clock in the morning, which is a time when most people with Lyme cannot
function, then can the disabilities office do an over-ride to get the kid into
classes later in the day? There are many functions of disability offices. I suggest
that parents and kids meet with the disabilities office and find out what they
can do for a student with Lyme, and how open they are to working with a
student given appropriate documentation. It’s only fair for schools to expect
appropriate documentation to back requests for accommodations.

What would appropriate documentation be?
One thing is the medical letter. The letter has to be comprehensive, covering
whatever those issues might be. Some colleges don’t require a student who is
ill to be full time in order to live in a dorm. That’s definitely a plus. Full time
might be more than a young person with Lyme can handle, at least as they
begin college.
Another important piece of documentation is the neuropsychological evaluation
done by a Lyme-literate neuropsychologist. That’s the document that will point
to specific cognitive impairments as well as issues with focusing and
organization. With the information on this evaluation, the disabilities office
should be able to develop a plan for educating the student with Lyme disease,
giving supports needed, as documented in the neuropsychological evaluation.

It seems a lot of young people have a tough time with the fact that they
look fine but they’re really sick - they have an invisible disease. What do
you say to them when it seems their peers are passing them by?
One of the things that I’ve been seeing with the older teenagers, particularly
girls, has been very interesting. I have counseled girls who have been on
homebound instruction and cannot participate socially because of significant
problems from Lyme, even though they look just fine. When I start working
with them, they have feelings of pain and loss, because they’ve lost their
friends. When they’re better they look at the social life of teenage girls in a
different way. They say, I would have been part of that gossipy, material-
driven social life if I hadn’t gotten sick, but you know, now that I’m better, I
don’t choose to be a part of that. When the kids are able, they choose a life
that’s different and make their friends in a different way than they would have
had they not been sick. There’s a tremendous amount of resilience in these
kids. They talk about what they can do instead of what they can’t do. What I’ve
observed is that these kids come out of it emotionally better and ethically
better. They have a different sense of morality and a real appreciation of life
that most teenagers don’t have. I see it with boys too. They realize they’re
different from the other kids and it’s not only not so bad, it’s really good.
And then you ask: "Going forward, what are some of the things you’d like to do
with your life – now, six months from now? What do you see yourself doing?
What do you have a passion for?" We start exploring where they might go.
Similarly, with adults, some of the major advocates in the Lyme world have
had professional careers where you’d expect them to return to their profession
when they or their families recover, but instead they say, hey this is a crazy
illness, there is a lot of suffering out there, and I want to make a difference.
They become advocates instead of going down the trajectory they used to be
on. They become very purposeful.
One of the best books I’ve ever read in my life is Man’s Search for Meaning, by
Viktor Frankl. He was a Holocaust survivor. Even though his wife was murdered
and his other family members were murdered in the extermination camps, he
had this idea of a book that he wanted to write. The emphasis of the book is
that having meaning in your life is how one lives and survives trauma. He’s not
saying that all the people who survived had meaning in their lives or that those
who didn’t survive lacked meaning. He’s saying that he kept his grounding
during that horrible trauma because he had meaning - in his case, the vision of
this book.
I try to find meaning starting from where the client is. I have a girl whose brain
cannot handle even homebound school instruction. So she does crafts and her
grandmother does crafts with her, while her parents are both at work. Maybe
this young lady will become an artist or a graphic designer. At the very least,
she feels safe and loved during her illness, even on her worst days.
I choose the word client instead of patient, by the way. I don’t see my people
as patients. They are Lyme patients but I see them as clients and I see us as a
team. Lyme-literate psychotherapists are in the unique position of identifying
who needs to be on a team. Mental health practitioners have the luxury of
spending a long time with our clients without talking much about the medical
aspects of the disease. The team certainly includes a doctor and
psychotherapist, but we may need to enlist a Lyme-literate psychiatrist (Dr.
Robert Bransfield) who can medicate for sleep and other issues related to Lyme
and the brain in order to improve functioning. And we may need a
neuropsychological evaluation - not just for children but for adults as well,
especially young adults who are trying to figure out what works in their brain
so they can move forward with higher education. We may need a neuro-
optometrist to deal with Lyme-driven difficulties with vision such as problems
with convergence and double vision. Then you may have speech and language
issues or audiological issues that call for other types of evaluations.

What are the biggest challenges facing a child with Lyme?
There are many, many challenges facing a child, and the biggest challenge may
be different for different children. Certainly a top challenge is staying on the
path to getting well. Children who have problems with dizziness, vertigo, and
stomach issues face the challenge of long car rides, and in some cases, plane
trips, to see their Lyme doctor. Compliance is a big issue. Most children that I
see don’t have a problem taking their medications regularly, but some balk at
taking supplements, not realizing how important the role of supplements is to
getting better. Most kids have a hard time staying on a healthy Lyme diet:
sugar-free, and for many kids, gluten- or dairy-free. The illness has taken so
much away from them; now it’s even taking away their favorite foods.
Keeping up with schoolwork is for some a huge challenge. I gave an example of
one girl who isn’t even well enough to be on homebound instruction. Kids worry
about not passing by the end of the year and having to repeat the current
school year. The older kids worry about not graduating high school with their
class. Having a social life is a huge challenge for some of these kids. Even
interacting with siblings can be a huge problem, particularly when a child is
sensitive to light and sound, and it’s something their younger siblings can't
understand.
Then comes the happy challenge - how to find their place in school and socially
when they get better. When their bodies and brains are intact, that challenge
is easier to meet, though still a challenge for someone with Lyme. One last
word - education is empowering. I encourage everyone to come to the Body,
Mind and Spirit Seminar and Health Fair that the Ridgefield Lyme Disease Task
Force is holding at WestConn in May. I look forward to meeting some of your
newsletter readers at this excellent event.

Sandy Berenbaum has offices in Southbury, CT and Brewster, NY. http://www.lymefamilies.com/

Janet Jemmott is editor of the Lyme Connection newsletter. To receive future issues online, sign up on our Home Page.

Janet Jemmott is editor of the Lyme Connection newsletter. Sign up on our home page to receive upcoming issues.