“Problems that remain insoluble should be suspected as questions asked in the wrong way” —Watts

A Systems Approach to Pediatric Lyme Disease

Physicians treating a child with a tick-borne disease should consider the child’s family and environment as an integral part of treatment planning.

An illness like Lyme disease can have negative effects on both a child and their family. Disturbingly, aspects of family life that support the heath and well-being of all family members – including family cohesion, parental availability, social and financial resources, and maternal mental health – can be adversely affected by the presence of a child with chronic illness such as systemic Lyme disease.

The confusion surrounding diagnosis and treatment of tick-borne infections adds to the stress of parents trying to find adequate and effective care for their child while defending a Lyme diagnosis to family and community members who are misinformed about tick-borne disease. Many medical and education professionals underestimate (or are ignorant of) the multi-faceted impact of tick-borne infections. Emotional and cognitive problems and difficulty with academic performance may not be addressed in medical appointments, and these symptoms can have long-term consequences for a child and their family.

Parents may require support making dietary changes, organizing medications, and following treatment protocols. The financial and logistical implications of Lyme disease on families can be significant. Many families need help understanding this, and planning for their child’s care and convalescence.

Physicians focusing on the medical treatment of Lyme disease may not be able to directly support these aspects of care, but they can establish collaborative relationships with mental health providers, nutritionists, family coaches, school professionals, financial planners, and non-profit organizations who can help create a multi-dimensional approach to treating a child’s Lyme disease.

Considering a child’s environment, family, resources, and circumstances in treatment planning can tremendously improve the outcome for a child with Lyme disease, as well as reduce collateral damage on their family. Amidst the vibrant discussions about scientific research, medication, and testing, must also address the critical need for collaborative and comprehensive treatment.

10 Things to Know About People with Lyme Disease

The information below can help you better understand the unique challenges and difficulties for people who are living with Lyme disease and tick-borne illness, and their families.

1. Symptoms can change frequently. Because Lyme symptoms are related to inflammation, they can vary from day to day. Someone with Lyme disease may feel up for hiking or playing sports one day, and be genuinely bedridden the next. Not being able to predict how you will feel, or knowing what you will be able to accomplish each day, can be incredibly frustrating.

What you can do: Be flexible and compassionate. Don’t accuse someone of ‘faking it’, or say, “they didn’t seem sick yesterday”. Try to understand when plans must be altered to accommodate changing symptoms.

2. People with Lyme disease have to be very careful about what foods they eat. They should not eat sugar, and maintaining a high protein, gluten and dairy free diet is important to their health. Their bodies may have difficulty processing alcohol or caffeine, and certain foods or beverages can lower their immune system. This makes dining at restaurants, or celebrating special occasions, difficult – especially for children.

What you can do: Avoid making fun of someone who needs to make food choices that are atypical for our culture. Even better – provide a gluten free, dairy free, and low sugar (or sugar free) alternative for guests in your home. Choose restaurants that can accommodate the dietary needs of someone healing from Lyme disease.

3. They have to rest. ‘Overdoing it’ can have a major negative impact on someone healing from Lyme disease. For parents with young children, and people who had vital, vibrant lives before becoming sick, slowing down and doing less can be emotionally challenging. In addition, severe insomnia is common in people with Lyme disease, so they may not be getting enough rest at night (a problem when proper sleep is essential for a healthy immune system).

What you can do: Be patient. Be flexible. Cook them a meal, mow their lawn, babysit their children, drive them to a doctor appointment, help them any way you can. Recognize that people who used to be able to ‘do it all’ will not be able to – until they take time to heal. For children, remember that what looks like ‘behavior problems’ or ‘tantrums’ may be their only way of letting you know they need a break.

4. Supplements, herbal medicine, acupuncture, naturopathy, and non-Western medical interventions can really help some people with tick-borne illness. Lyme bacteria can deplete essential minerals, and the immune system may benefit from detoxification and herbal support. Probiotics help repopulate the ‘good bacteria’ often destroyed by antibiotics used to treat Lyme. While these interventions may not be ‘mainstream’ they have been shown to help people with tick-borne illnesses heal.

What you can do: Protect your loved ones from people who claim they can ‘quickly cure’ chronic Lyme disease, and who offer expensive treatments (people sick with Lyme are often desperate to feel better!). Respect that plant based medicines, professional advice, and activities such as yoga practice and meditation, have been shown to promote healing and well-being.

5. Depression, Rage, and Cognitive Difficulties are all symptoms of tick-borne illness. According to Sandy Berenbaum, LCSW, “Children and adolescents with chronic Lyme often meet the DSM criteria for one or more “mental illnesses”–anxiety disorder, depression, anorexia nervosa, AD/HD, as well as disorders in which behavioral problems manifest”. A survey by the National Lyme Disease Association revealed 59% of people diagnosed with Lyme disease were initially diagnosed with a mood disorder. Depression, memory loss, changes in behavior, and cognitive problems may be the only noticeable symptoms of an active infection.

What you can do: Recognize the psychological and cognitive symptoms of tick-borne disease. Notice when someone’s behavior is unusual or atypical and inquire, rather than judge. Help others learn how Lyme disease in children may appear as ADHD, learning disabilities, or behavior problems.

6. People with Lyme disease can be very uncomfortable in the heat. They may feel sicker in hot weather. If they are taking antibiotics, they may need to avoid sun exposure entirely. (Also, heightened sensitivity to bright light can be a symptom of infection).

What you can do: Plan activities for cooler times of day (or stay indoors with air conditioning). Be respectful when someone says they are uncomfortable, and make sure that cool, shady areas are accessible.

7. It may take a long time to heal from Lyme disease and tick-borne infections. In a culture used to “quick-fixes” it can be hard to comprehend that healing from a tick-borne disease may take several years. Some people find treatment works quickly and effectively. Others may go into remission, but will have a lifetime of dietary restrictions, vulnerable immune systems, and fears about relapse.

What you can do: Be supportive. Let your loved ones know that you are with them for the ‘long haul’. Remember that, although Lyme disease is a medical diagnosis, the psychological and emotional impact of the disease is vast, especially when someone’s lifestyle and productivity is radically altered.

8. Lyme disease is expensive. Health care costs for people with chronic Lyme are significantly higher than the general population, and effective treatments may not be covered by insurance. This can increase stress (especially for someone who is too sick to work!) and reduce opportunities to participate in social activities – at a time when social support and interaction is critical to emotional health and well-being. A family’s resources may be skewed toward a sick child, leaving others’ needs unmet.

What you can do: Plan social activities that are low cost, such as watching a DVD, attending a free lecture, or sharing a picnic. If the financial impact of Lyme disease on a family is significant, help organize a fundraiser. Assistance with yard work, tax preparation, simple car repairs, and similar tasks can help to reduce a family’s overall expenses.

9. People with Lyme disease (and their families) can become isolated. Friendships can wither during a long convalescence, plans may frequently need to be cancelled – and for children, behavior changes can affect the development of social skills (which is then exacerbated by the resulting lack of interaction). People with Lyme disease and their families can often feel very alone.

What you can do: Check in – often. Be understanding when someone feels overwhelmed, or has to change plans at the last minute. Be a good listener. Invite a child to a playdate or birthday party – even if their behavior can be challenging (arrange for an extra helper to assist the child). Most of all – act with compassion for the person with Lyme disease, and their family.

10. It is hard to find proper treatment for Lyme disease and tick-borne illness. People with Lyme often have to travel many hours, or even out of state, to find effective treatment.

What you can do: Offer to check on pets, or pick up children from school. Make a ‘care package’ for long car trips. Gift hotel vouchers or airline miles. Join others who support expanding training for medical professionals about the diagnosis and treatment of tick-borne illness.

Lyme News and Presentations and Activities

It has been a busy time –getting ready to launch the full version of my new website, caringforandhealing.com, and share my work at the Lyme Disease Association’s Health Fair in Danbury, CT on May 12.

There were moments in graduate school when I wondered if I was on the right path. Then I would be connected with a family like mine, affected by pediatric Lyme disease, who appreciated the information and ideas I had to share. This was a reminder of the need for a better understanding of both tick-borne disease, and how one child’s illness or disability can affect a whole family.

I am grateful to be able to do this work, and have decided to make as much of it as I can available for free on the new website, which will be finished in May. I have taken a studio space at the Compass Music and Arts Center, and will continue selling my jewelry and art to help support my work with children affected by Lyme and tick-borne illness, and advocacy for families. After taking time off to work on my thesis, it is fun to get back to creating artwork – and I look forward to sharing it on this site.

Here We Go Again……

Yet another round of EM rashes. Trying not to feel discouraged, and considering the implications of treating with doxy in the summer months (no sun exposure) or trying to go the herbal route – at least until school starts again.

It is a good reminder (as I am beginning to work with Lyme patients and others with both acute and chronic diagnosis) of the intense emotions that can go along with an illness. I was saddened to see my son’s disappointment when we noticed the bulls-eye rashes – and his acceptance that this disease continues to affect his life.

I am reminded of a moment last October; I picked him up from school, and he was talking to me about how great this school year was going (he happened to have been on doxy for the past six weeks). I said to him, “Well, this is the first year you are really feeling well, right?” His response: “Mom, do you mean this is what most people feel like all the time?” I definitely had to hold back some tears at that moment.

So, even though we have hit another bump, I am grateful that we have come so far, and remain open to the lessons we have yet to learn.

Inspired

Inspired by @chrondetermined asking for some positive stories about #Lymedisease, I am thinking about the many ways our experience of Lyme and Bartonella infections made our lives better.  Our whole family is healthier and stronger because of the diet and lifestyle changes we have made together. We live more simply, and truly understand the value of a ‘good day’. We are more supportive of each other. We know what really is important. Most significantly, we have become much more compassionate people than we were before Lyme disease entered our lives.

Lyme and Bartonella

Dr. Richard Horowitz commented on a study showing tetracycline antibiotics were an effective treatment for some schizophrenia symptoms. He also addresses the connection between tick-borne diseases such as Lyme and Bartonella, and treatment resistant depression, anxiety, rage and neurological problems. Dr. Horowitz concludes, “It is therefore plausible that a certain number of cases of severe psychiatric presentations are due to underlying infections, especially since Lyme disease is the number one spreading vector borne infection in the world.”

I was perplexed when my son’s behavior problems – including hyperactivity, depression, rage and OCD – would go away with antibiotics and return within several weeks of stopping their use. Also, how inflammation (usually related to diet) would often result in behavioral and neurological symptoms. I’m grateful to see that studies are showing what many of us know through experience, and support the idea that medicating psychiatric symptoms is not enough.

http://www.psychologytoday.com/blog/why-can-t-i-get-better/201402/antibiotics-found-effective-in-schizophrenia

Speaking with VHD’s director about #MSIDS and living with #lymedisease

I would like to add to yesterday’s post that Dr. Chen also inquired about my experience with Lyme disease, and listened respectfully when I shared our story of constant relapse, severe neuropsychiatric symptoms, and the social, professional and financial challenges we faced while trying to obtain adequate treatment for our son. I am hopeful that the complexities of Tick-borne disease are beginning to be understood by the medical establishment, and I appreciated the opportunity to share our experience with someone who has the power to change how the medical community treats Lyme and MSIDS patients.

Good News!!

I was excited to get a call at home from Dr. Harry Chen, Commissioner of the Vermont Department of Health. He let me know that the VDH will be making many of the changes I advocated for to the Lyme disease section of their web page. These include adding information about chronic manifestations of the disease, reorganizing available information, and removing links to outdated and biased websites. Hopefully these will be implemented sometime soon?.

Notes

My current internship involves developing a program for pediatric illness management. I propose that any chronic pediatric illness, whether Lyme disease, diabetes or asthma, cannot be treated without addressing the health and well-being of the child’s family. Siblings are affected, marriages and finances are challenged, careers are put on hold, routines changed, and plans deferred.

The module I am developing helps parents to acknowledge these effects, and creates a system for making personal and lifestyle changes that can help a child – and their family- heal.

“Luke’s Journal”

Tonight we were at our son’s baseball game. His first year playing little league is significant because there were springs and summers he was too sick to leave the house. Playing sports was simply not an option.

The journey we have been on as a family has addressed so much more than Lyme disease – friendship, community, depression, addiction, parenthood, anxiety, dreams, family legacies.....

I am grateful for everything we have learned, but sitting here tonight, watching the game, what I appreciate is the health of our family, and the well-being we have worked so hard to achieve.

Vermont Department of Health

I have been writing to Commissioner Harry Chen, M.D. and the Vermont Department of Health to encourage them to make changes to the VDH web section for Lyme and Tick-borne Diseases. I have also requested that the VDH establish a formal interdisciplinary committee to vet information about tick-borne disease and provide Vermonters and their physicians with a source of accurate information on the debate about Lyme disease and treatment protocols.

The Burlington Free Press published my letter to the editor about this subject. If you would like a copy of my report to the Vermont Department of Health or of my letter to Dr. Chen please contact me and I will send it to you.