Lyme disease is a bacterial infection transmitted by the bite of an infected tick. If left untreated the infection can spread to joints, the heart and central nervous system and cause a chronic debilitating disease. Early signs include a skin rash called erythema migrans, flu-like symptoms and a headache. The early manifestations of the disease such as a characteristic skin rash can be treated effectively with a course of antibiotics. However not everybody gets that skin rash or overlooks it and when Lyme disease has been disseminated it can be more difficult to treat. For a general overview of Lyme disease read our article “What Is Lyme Disease?”
According to the CDC approximately 25% of all Lyme disease cases happen in children. Children who develop Lyme disease can’t always explain what is wrong. When the red rash and the tick bite are missed it becomes difficult to recognize that they have Lyme disease. Many of these children are not diagnosed initially because their complaints are vague and thought to be all functional. They come down with the flu in spring or summer but they recover a week later and you don’t think about it again. Over time your child becomes irritable and agitated and doesn’t feel like playing anymore and complains of a headache.
Susan is 12 years old. She has anxiety and paranoia and she has difficulty sleeping at night. Prior to a flu in the summer Susan was fine. She was a bright student but now she fails every test. She appears physically fit and healthy. Her symptoms and functional problems make no sense. Her symptoms slowly appeared after the summer flu and her anxiety and paranoia had a dramatic and sudden onset.
Because Susan lives in Lyme endemic area and is outdoors a lot she is referred to a pediatrician who does a Lyme disease test but it comes back negative. Susan’s functioning keeps declining. She can no longer go to school and has to be home schooled. Some days she is too weak to get out of bed.
A Lyme disease specialist finally sees Susan on the basis of her risk of exposure to ticks, the summer flu and the constellation of symptoms he makes a clinical diagnosis. He puts her on the antibiotic Ceftin. Within three days her anxiety and paranoia disappear. She is sleeping 12-14 hours per night while before she couldn’t sleep at all. She has joint pain and her other symptoms temporarily worsen as the result of a jarisch-herxheimer reaction.
Susan went from being a child who could no longer attend school to one of the top students in her class. She was a sick and homebound child but has become a bright teenager who is doing well. She gets good grades and likes to hang out with friends. But every time the Lyme disease specialist stops the antibiotics her symptoms return. Susan is battling late stage Lyme disease.
Signs & symptoms
Lyme disease can cause joint pains, heart problems, stomach problems and almost any kind of manifestation. It is a multi-system illness but especially children who are neurologically affected with the disease face the greatest misunderstanding. The neurological and neuropsychiatric symptoms have the greatest effect on learning and many school professionals don’t understand it. Some symptoms are subtle and teachers don’t realize they are dealing with a sick child. They might think the child is daydreaming or trying to avoid school work.
Once a child has been diagnosed and is on treatment there are problems produced by the treatment itself. The antibiotics he/she is taking may produce gastro-intestinal symptoms and the child may be complaining a lot and feel uncomfortable. It is hard for teachers to discern whether it is avoidant behavior or the result of an illness.
A teacher who doesn’t know much about Lyme disease has a difficult time realizing that with this illness, once the medication is started, the child will periodically feel worse, and have more, rather than fewer, symptoms as the result of a jarisch-herxheimer reaction. Another problem might be that your child doesn’t look sick and the extend of the problem is not reflected in what the teacher can see.
Some early signs:
- Stiff neck
- Aches and pains in muscles and joints
- Low grade fever and chills
- Poor appetite
- Sore throat
- Swollen glands
The majority of children who are seen early and given amoxicillin at the stage of the skin rash called erythema migrans do not go on to develop chronic symptoms but a small percentage do. Most of the children that go on to develop neurological manifestations are not diagnosed initially because their complaints are vague and thought to be all functional. In those cases the tick bite and the rash are overlooked or they didn’t develop a rash at the tick bite at all. Some children are sick three to four years before they are diagnosed with neurological Lyme disease. Some children develop neurological symptoms within 5 weeks after the tick bite and others will progress into the late neurological stage much later.
Children with neurological Lyme disease complain of a headache which comes on gradually, does not respond to over-the counter analgesics and becomes quite persistent. They complain of photophobia, dizziness, a stiff neck, backache, somnolence and memory and concentration problems. Some kids develop spatial disorientation, problems with verbal fluency such as word finding and dyslexia-like errors in writing or speaking. In more severe cases children can develop seizures.
Many children experience tingling and numbness or other neuropathic pains, weakness and autonomic nervous system involvement which can cause palsy of the gut or post orthostatic tachycardia syndrome (POTS). Some children develop muscle spasms, twitches and fasciculation which can be painful. Others develop motor and vocal tics and lose previously developed motor skills.
Parents may notice personality changes, irritability and mood swings in their child. It can be very difficult for children to verbally express what they are experiencing and are often overwhelmed by the disease. They may look absent and respond foggy to their environment. They can develop social withdrawal and new sudden onset anxiety, panic attacks or phobias. Some children develop anger management problems and oppositional disorders or psychosis such as delusions and paranoia.
The recommended length of treatment for neurological Lyme disease is 14-28 days of intravenous ceftriaxone in the IDSA guidelines but some children relapse (just like adults) and do better when they are treated repeatedly or for a longer duration.
Children with Lyme arthritis or acrodermatitis chronica athrophicans (a skin condition caused by Borrelia strains from Europe) should be treated with courses of oral and/or IV antibiotics for at least 30 days. Often these courses need to be repeated and treatment can be extended up to 90 days under the IDSA guidelines.
Physicians that see a lot of difficult cases follow ILADS guidelines and treat neurological Lyme disease initially intravenously for 6 weeks and repeat the treatment if the child relapses and generally follow up with oral antibiotics to treat co-infections and prevent a relapse.
- IV ceftriaxone 2 grams 1x daily. If the child weighs less than 50kg give 80mg per kilogram per day.
- Amoxicillin 1 gram 3x daily.
- Doxycycline 100mg 2x daily. (In children older than 12 y/o)
- Azithromycin 250mg 1x daily.
Because 25% of all Lyme disease infections happen in children it is very important to teach your child about Lyme disease and the need for tick checks. It is also important to teach them to stick to the middle of paths and trails and avoid tall grasses.
Six tips to prevent Lyme disease
1. Avoid wooded areas with high grass and leaf litter. Walk in the center of trials.
2. Wear long sleeved shirts.
3. Wear white or light colored clothing to make it easier to spot ticks.
4. Spray tick repellent on clothes and shoes before entering the woods.
5. Wear long pants and tuck your socks in your pants.
6. Wear closed footwear.
Tick repellents that are safe for children
Lyme disease has been on the rise for the last 20 years. Knowing that Lyme disease often strikes children is scary fact. It can be such a devastating disease. We want our children to play outside and have fun but we also want them to be safe. Especially from ticks and the diseases they carry.
It is very important to use tick repellents to prevent ticks but the products that are appropriate for adults are not all safe for children. Using a good tick repellent not only protects your child, it also gives us parents some reassurance and peace of mind. Don’t skip tick checks after a day outside because no tick repellent is 100% effective.
The CDC recommends DEET with a maximum concentration of 20-30% but Health Canada recommends a maximum concentration of 5-10%. These weaker concentrations don’t really offer much defense against ticks. So it is better to skip DEET all together and go for other effective tick repellents in your children.
When using a tick repellent on you child, apply it to your own hands and then rub them on the child. Avoid the child’s eyes and mouth. Use repellent sparingly around ears. Do not apply repellent to the child’s hands because children may put their hands in their mouths. Don’t forget to wash your own hands afterwards and keep the bottles of the tick repellent away from children.
When your children go on camp make sure the staff is aware of ticks and Lyme disease. Make sure they wear tick repellents and are checked for ticks daily and keep an eye on fevers, rashes and sudden behavioral changes for a couple of weeks afterwards.
- Choose a tick repellent of 20% picaridin, 20% IR3535 or Oil of Lemon Eucalyptus at a 30 to 40 percent concentration.
- The Oil of Lemon Eucalyptus can be used in children above 3 years old. Natural lemon eucalyptus oil is not the same as Oil of Lemon Eucalyptus.
- Consider permetherin treated clothing.
If you want to kill ticks on contact, permethrin is a great clothing and gear spray, but it should not be used on the skin. Other products repel ticks but permethrin actually kills them on contact.
The safest way to use this product is by buying permethrin treated clothing. Permethrin treated pants are particularly of interest. If you want to use a spray you can pre-treat their clothes before they go outdoors. Start by applying it to their socks, shoes and pants.
Don’t apply permethrin to the skin or to their clothes when they are wearing it. Spray their clothes in a well-ventilated area and let the items dry completely. This usually takes 2 hours. Permethrin will continue to be effective for up to 6 weeks and through 6 washings.
Global Lyme Alliance has wonderful educational programs for children of different ages. They also offer great educational material for teachers and school professionals.
Tick patrol: Lyme disease education for kids!
How to support your child
Lyme disease can lead to functional impairment in both children and adults. Adults sometimes have to quit their jobs due to disability or they have to switch to another job because they can no longer handle the stress, work pressure and certain responsibilities.
In children the functional impairment as a result of Lyme disease can make it very difficult for them to do well in school. The physical symptoms, the unpredictability of the good and bad days, and feelings of helplessness can be overwhelming and impact their school performance.
Fatigue, sleeping problems, lethargy, attention and concentration problems, depression, anxiety and obsessive or racing thoughts and behavioral problems can have profound impact on their ability to learn.
It can lead to poor school attendance, chronic lateness, incomplete assignments and tests, behavioral problems at school, withdrawal from peers (particularly when their friends don’t understand the impact of Lyme disease), weight gain or loss (sometimes dramatic), mood swings, inappropriate outbursts and increasing conflict because children and adolescents have a limited frustration tolerance and Lyme disease severely challenges the already limited resources.
Functional impairments in school are often very significant, and call on the school and teachers to develop creative plans to help the student with Lyme disease succeed. Without the support of the school, the best efforts of the parents might not be enough to keep a kid on track.
School can help by:
- Giving dispensation for unnecessary classes
- Give the possibility to come one or two hours later so they can have some more time to wake up and get sleep
- Reduce the burden of home-work assignments
- Give dispensation for physical education requirements
A child with Lyme disease needs to be both supported and encouraged. Base your expectations on how your child is able to function on a daily basis. Have expectations but keep them in line with where he/she is at in treatment as well as whether he/she is having a good or bad day.
Especially when Lyme disease affects the neurological system and their school functioning it can be valuable to consider psychotherapy and family therapy but make sure you find a therapist who is Lyme literate.
School administrators and teachers who are knowledgeable about the child’s illness can develop flexible schedules and permanently excuse him/her for a percentage of the home-work, give extra time for testing and set the distracted child close to the teacher instructing. Teachers should give support and encouragement without blaming the child for unsteady performance.
There should be no battle between school and the parents. Sometimes these informal accommodations fail because the school refuses to believe that the child who looks healthy is in fact sick. Make sure you have the documentation to inform school personal about your child’s illness including brain SPECT scans, neuropsychological evaluation and a letter from your treating physician.
Another reason why informal accommodations fail is when the child needs more support and is more severely affected by Lyme disease. The law in the United States dictates that a child with a disability has a right to accommodation to compensate for disability. It is an entitlement by law but those protecting the budgets might not be very willing to cooperate immediately.
These are some accommodations that can be made:
- Unlimited time for testing
- Separate testing location
- Test read to student – in patients who have particular verbal learning problems but in whom auditory learning is less impaired
- Excused from a percentage of homework. Children with profound fatigue who are struggling to get through a school day will especially benefit from having less work to do at home. They can use that time to recover.
More homework is not always better. It is in the benefit of nobody if the child has problems with memory and organization to push it to do homework after school and/or in the weekend. If the extra time for recovery means he/she can perform better at school it is worth it.
Remember that you as parents have the important job to advocate for your child. School professionals have formats and protocols to follow and they are used to these meetings but you are not. Go into these meetings prepared. Take your documentation with you and don’t give up. If you don’t find the support from the school the first time find a support group and network with other parents who have been dealing with their children’s schools for years. Some of these parents may even be willing to join you in a meeting with the school to support you.
Congenital Lyme disease
Not all physicians are aware that Lyme disease can be transmitted congenitally from the mother to the child. There have been multiple cases of congenital Lyme disease documented in peer-reviewed research papers. It is thought that congenital Lyme disease is not common. In most of the cases these children do improve with antibiotic treatment but some will continue to have symptoms that might affect their development despite the treatment.
Evidence of infection within the child might be seen directly or soon after birth. Adverse birth outcomes include spontaneous miscarriage and fetal death. Some physicians believe that the bacteria can lay dormant until the first signs of Lyme disease manifest much later in life. When Borrelia burgdorferi is acquired through a tick bite this is an accepted possibility but with children who acquire Lyme disease congenitally it is not really clear.
Sue Faber, a wonderful patient who has gone to great lengths to bring congenital Lyme disease under the attention of medical professionals remarks that this latency of symptoms has both been described in HIV and syphilis and that it is not a new concept. She refers to a publication by Lyme disease expert Dr. Ray Charles Jones:
“Years of research on congenital syphilis, caused by the spirochete T. pallidum, demonstrated that congenital syphilis surveillance is complicated by difficulty in establishing the diagnosis, that most infants born with congenital syphilis have no signs of disease at birth, and that it is almost entirely preventable with early prenatal screening and treatment.
A significant number of past studies conducted on Lyme disease during pregnancy have repeatedly found pregnancies resulting in adverse fetal outcomes and cases that presented with clinical findings possibly caused by transmission of Lyme disease but the lack of positive diagnostic testing using ELISA, indirect fluorescent antibody ( IFA), and Western blot has left researchers still questioning the cause of these findings as being Lyme disease.“
Health authorities recommend that pregnant women who have Lyme disease should be treated but they think the evidence of congenital transmission is not so clear. However in the World Health Organization ICD11 revision congenital Lyme disease is included as an alternate mode of transmission on the basis of the available scientific evidence.
LymeHope: Pregnancy & congenital Lyme disease
Accused of child abuse
If having a child sick with Lyme disease isn’t bad enough in itself some parents face child abuse allegations because their children don’t recover after a short course of antibiotic treatment. This can be a very stressful experience.
There is no consensus regarding the treatment of persistent symptoms after an initial short course of antibiotics. There are two international treatment guidelines for Lyme disease, one is the 2006 guidelines written by the Infectious Diseases Society of America (IDSA) and the second is the 2016 guidelines written by International Lyme and Associated Disease Society (ILADS).
The IDSA recommends a restricted duration of treatment and does not recommend repeated or prolonged courses of antibiotics when patients fail to recover. ILADS recognizes the emerging scientific evidence that Lyme disease can persist after antibiotic treatment and recommends repeated or prolonged courses of antibiotics when patients do not respond fully to treatment.
Parents that choose to treat their children according to the ILADS guidelines sometimes face child abuse allegations. In most countries it is the law to report child abuse or neglect. Members of the public and professionals who work with children are required to report suspected cases to a child protective service agency. However these child protective services are not equipped to resolve cases where there are medical disagreements. It is inappropriate to ask child protective services whether a child should be treated according to one or the other of the internationally accepted treatment guidelines.
Parents have the right to protect their child’s health and choose to treat according to ILADS treatment guidelines. It is also not uncommon for parents to seek treatment that follows these guidelines. Confusion, misinformation and disagreement has led to accusations of child abuse and/or Munchhausen by Proxy against some of these parents in the United States, Canada, Europe and Australia. Fortunately, parents have successfully overturned these wrongful accusations and they have reported those persons who made the wrongful charges, and this has resulted in formal reprimands and other punishments.
For more information about child abuse allegations see the document provided by Jenna Luche Thayer.
- Medical Disagreement over Lyme borreliosis Treatment by Jenna Luche Thayer
- Gestational Lyme Disease Case Studies of 102 Live Births by Charles Ray Jones
- Lyme Hope Canada – website of Canadian mothers who have got children with congenital Lyme disease.
- Global Lyme Alliance – educational resources for students & teachers.
- Children’s Lyme Network – patient organisation for children with Lyme disease.
- Lyme Light Foundation – financial grants to enable children to receive proper Lyme disease treatment.
- LivLyme Foundation – Lyme disease foundation by Olivia who got Lyme disease when she was 6 y/o.
- Lyme Disease Association – Kids and Lyme disease & How it affects their learning.