According to the CDC about 25% of all Lyme cases occur in children. Many children do not develop a rash, or they may have tick bites that have gone unnoticed because the tick has embedded itself on the head. (Children tend to get bitten on the head and neck.)
Children with Lyme disease have special needs. They cannot make medical appointments for themselves, or research their symptoms online. Children cannot articulate what is wrong with them, but simply “act out” when they are feeling unwell. Most important of all, children cannot defend themselves against adults who believe they are “making it up.”
Any observant parent can tell when their child is ill. A child may complain of a stomach ache, or a headache. Typically, ill children lose interest in playing and become listless, or irritable. All of these are warning signs that something is amiss. But to an outsider, these signs may be misinterpreted as simple unwillingness to go to school. Furthermore, when the child has difficulty learning or finds it hard to concentrate, he or she may be diagnosed with ADD.
It is up to the parents to track down the source of their child’s sudden change in behavior. But while parents may be convinced their child is ill, it may be difficult to prove it. According to neurologist Dr. Dorothy M. Pietrucha, children with Lyme disease may have unremarkable results on routine tests. When these normal results are combined with non-specific symptoms such as stomach or headaches, it is easy for school officials to dismiss a child as a malingerer.
What to do if you suspect your child has Lyme disease
First, believe the evidence. If your child suddenly develops symptoms, such as those below, your child is ill and needs medical attention. If you live in a Lyme-endemic area, insist on a Lyme test.
General and Immunological
- Fatigue – according to Dr. Jones, the child just “wilts.” Stamina is poor, and the child may appear sluggish and unmotivated. Bursts of energy may be followed by collapse.
- Joint and muscle pain – typically in the knees, although other large joints may be affected. Muscle pain is generalized, and may be accompanied by a loss of muscle strength. Joint and muscle pain are migratory.
- Fevers – generally low grade.
- Headaches – these are often described as pressure in the head.
- Night sweats
- Sore Throat – these are often severe.
- Digestive problems – most commonly stomach aches and nausea.
- Sleep disturbance – children may sleep four or five hours a day, or more, in addition to a full night’s sleep, or develop insomnia.
- Irritability and low frustration tolerance
- Mood swings
- Obsessive-compulsive behavior
- Oppositional behavior – may be misdiagnosed as having Oppositional Defiant Disorder (ODD)
- Aggression, anger and rages
- Loss of balance
- Double vision
- Photophobia and hyperacusis (sensitivity to sound)
- Tingling and numbness
- Paresthesias – stabbing, pricking, burning sensations on skin
- Cognitive problems – difficulty with memory, concentration and learning new material in school. May be misdiagnosed as ADHD or ADD
- Difficulty speaking – slurring, stuttering, hesitations.
- Malar rashes – also known as “butterfly rashes,” these cover the cheeks and bridge of the nose.
- Small purplish-red nodule on the ear lobe
Second, support your child. Lyme disease may take a long time to heal, especially if your child has had it for a long time. Your child will need your assistance in managing the illness.
Third, be your child’s advocate. The school system may not be willing to implement accommodations for your child, so you will have to insist. You will also have to be persistent in getting a diagnosis. Too many pediatricians chalk up symptoms to “growing pains” or “a virus.” You need to make sure your child is tested.
It was through the efforts of two mothers who were concerned about their ill children that led to U.S. recognition of Lyme disease. We must all follow in their footsteps.
Strategies for Managing Lyme Disease in Children
- Rest – according to Dr. Jones, children with Lyme disease need plenty of rest. Children do not know when they need to rest, so it is up to the parents to enforce rest periods.
- Accommodation – children may experience light and sound sensitivity as well as an intolerance for certain textures of clothing. These are neurological effects of the illness, not “fussiness.” Allow children to wear sunglasses, and reduce their exposure to loud noises, as well as rough or irritating clothing.
- Reduce stress at home- all illnesses are worsened by stress. Stress hormones released by the adrenal glands actively interfere with the ability of the body to heal. If your son “acts out” do not punish him. Put him to bed, or read him a story.
- Reduce stress in school – Lyme disease interferes with learning, so your child may fall behind in school. If your daughter is very ill, you may have to remove her from school entirely. If your child is faltering, but still able to attend school, you may have to request special accommodations. The Americans with Disabilities Act (ADA) provides the legal basis for requesting accommodations, such as 504 plans, for children with long-term illnesses.
Autism and Lyme
Very young children who contract Lyme disease may become withdrawn and inaccessible. Because a diagnosis of autism is based on behavior, these children may be misdiagnosed with autism spectrum disorder.
In 2012 Mason Kuhn et al. administered antibiotic treatment to five children (ages 18 months to 55 months) who had been diagnosed with autism. All of the children tested positive for Lyme disease. After six months of treatment with amoxicillin and Azithromycin (for three of the children) the researchers reported improved speech, eye contact, sleep behaviors, and a reduction of repetitive behaviors. The children’s SAP-O scores (an assessment of autism) also improved.
While the findings of this study do not indicate that all children with autism spectrum disorders have Lyme disease, they do suggest that young children who develop autistic behaviors should be tested for Lyme disease, especially if they live in Lyme-endemic areas.
Lyme Disease in Adolescents
When an adolescent contracts Lyme disease, the symptoms present exactly as they would in an adult, including emotional lability and irritability. Parents may interpret mood swings in a teenager as typical of the hormonal swings of adolescence. However, if emotional lability is sudden, and if it is accompanied by the physiological symptoms of Lyme disease – joint and muscle pain, sore throats, low fever, “flu-like” symptoms, visual disturbances – then a Lyme test is in order, especially if the symptoms have come on suddenly, or if they present during summer months.
Unlike small children, adolescents have a need to establish their independence. Parents may not be able to intercede as much as they would with smaller children, and while a teenager who has Lyme disease needs to rest and moderate activities, it may be difficult to persuade him or her to cut back.
How to Manage Lyme Disease in Adolescents
- Allow social interactions – establishing a peer group is very important at this stage in life and it is well known that isolation has profoundly negative effects on teens. Allow your teen to visit with friends, even if it means homework needs to be put off.
- Ask for school accommodations – during high school your teen will be under considerable pressure to do well in classes. Ask your child’s school to make appropriate accommodations. You can devise a 504 plan that provides additional time on tests, or that allows testing in a separate room to diminish distractions.
- Watch for signs of self-medication – if your son is aware that he is falling behind at school and doesn’t know why, he may turn to stimulants.
- Reduce stress – the teen years are difficult at best. If you have an ill teen, those years can be hard to handle. Try not to add fuel to the fire.
- Watch for signs of depression – isolation is the inevitable result of chronic illness. When teens are isolated they become depressed. In a Columbia study, parents indicated that 41% of children with Lyme disease had suicidal thoughts and 11% had made a suicide gesture. If you notice your daughter is becoming depressed, encourage her to talk about it with someone she trusts (the suggestion of counseling is often met with hostility). Encourage social activities to the extent that the illness allows, and encourage contact with friends.
Resources and Further Reading
The Lyme-Autism Connection by Tami Duncan and Bryan Rosner
Kids and Lyme disease: How it affects their learning by Sandy Berenbaum, LCSW, BCD
Lyme Disease and Children, Critical Issues by Patricia V. Smith, President, Lyme Disease Association
R. A. Hamlen & D. S. Kliman. Lyme Disease: Etiology, Neuropsychological Sequelae, and Educational Impact.
Healy TL. The impact of Lyme disease on school children. J Sch Nurs. 2000 Apr;16(2):12-8.
Mason Kuhn, Shannon Grave, Robert Bransfield, Steven Harris. Long term antibiotic therapy may be an effective treatment for children co-morbid with Lyme disease and Autism Spectrum Disorder. Medical Hypotheses, Volume 78, Issue 5, May 2012, Pages 606-615
McAuliffe P, Brassard MR, Fallon B. Memory and executive functions in adolescents with posttreatment Lyme disease. Appl Neuropsychol. 2008;15(3):208-19. doi: 10.1080/09084280802324473.
Dorothy M. Pietrucha, M.D., P.A. Neurological Manifestations of Lyme Disease In Children
Felice A. Tager, Ph.D., Brian A. Fallon, M.D., John Keilp, Ph.D., Marian Rissenberg, Ph.D., Charles Ray Jones, M.D., Michael R. Liebowitz, M.D. A Controlled Study of Cognitive Deficits in Children With Chronic Lyme Disease. J Neuropsychiatry Clin Neurosci 13:4, Fall 2001.
Last Updated: 4/24/15