Health Challenges and School
Hydrocephalus, as well as the other medical conditions that can accompany it, can have an impact on a child’s ability to participate fully in school (emotionally, cognitively, and/or physically). As parents, we know our children best, so assisting the educational team in understanding how some of these other issues can impact your child will allow them to create a holistic approach to supporting them during the school day and throughout the year.
All children with hydrocephalus should have an Individualized Healthcare Plan (IHP) on file with the school nurse. An IHP is a plan of care written by the registered nurse for students with or at risk for physical or mental health needs (ANA & NASN, 2017). Your child’s IHP should list the signs and symptoms of a shunt malfunction or endoscopic third ventriculostomy (ETV) closure, as well as doctor information and hospital preference. An IHP is required if prescription medication needs to be given at school, but it will also allow you to give permission for the school nurse to administer over-the-counter medications (ex. Tylenol, Advil, etc.) should you choose to allow that. Ask the school nurse for the official form they are required to keep on file. These are typically provided by the County or the School District administration.
Shunt Revisions and ETV Surgery
Most children with shunted hydrocephalus will undergo at least one shunt revision in their lifetime. Some children have numerous revisions, sometimes several in one year. Children with an endoscopic third ventriculostomy (ETV) may also require repeat surgery if their ETV closes. When a child returns to school after a surgical intervention, they will have an incision(s) on their head and may have a patch of hair shaved with visible sutures. Children undergoing a shunt revision may also have an abdominal incision(s), or, in fewer cases, an incision on their chest for a ventriculoatrial (VA) or ventriculopleural (VPL) shunt. They may feel very sore and tender for a week or so after surgery.
There is a physical and emotional toll returning to school after major surgery. Children may not want their teachers and peers to know. To hide the incision site on their head, some children prefer to wear a cap, scarf, headband, or bandana to cover the area, and the child’s preferences should be observed in this regard. This could require special permission from the school depending on dress codes. Children may also need to ease back into physical education classes or school sports. Listen to your child’s neurosurgeon for guidance on when normal activity can resume as well as to your child. These should be communicated to their teachers and the school nurse. If your child is sensitive to others knowing about the surgery, alert their teachers to that sensitivity so that they can respect your child’s privacy, particularly in relation to their classmates.
Seizures
Epilepsy is common in people with hydrocephalus. Of individuals with shunted hydrocephalus, an estimated 20% have epilepsy (Klepper et al., 1998). The exact link between hydrocephalus and seizures is not known. Sometimes medication is necessary to control or prevent seizures, which may lead to other side effects. If a child is on anti-seizure medication, the school nurse should be informed and it should be included on the child’s Individualized Healthcare Plan (IHP). This condition should also be communicated to his or her teachers.
Other Medical Conditions
Hydrocephalus is often accompanied by other medical conditions, such as spina bifida, Dandy-Walker syndrome, and cerebral palsy. If your child has other conditions, they should be communicated to the school nurse and teacher(s), and, if your child has a 504 plan or Individualized Education Plan (IEP), it will be noted there.
Headaches
Children (and adults) with hydrocephalus have headaches, just like everyone else. Some children with hydrocephalus experience chronic headaches. Sometimes these headaches can be so severe as to interfere with a student’s ability to concentrate. Children may rest their head on their arms while they do their work, which can often be misinterpreted as a behavioral issue.
Severe and recurrent headaches can be a sign of shunt malfunction so it is important to make sure your child’s teachers are aware so that they can communicate with you and/or the school nurse. Some children may develop a pattern of having a headache at a certain time of day. This could be due to over draining. Teachers can be a wonderful partner in picking up on these patterns. In this instance, a simple plan to have a child lie down for a short while before the onset of the headache – this eases the pressure on the brain and helps the child relax – and may allow a child to be able to return for the rest of the school day.
Precocious Puberty
It is not known for certain why some children with hydrocephalus go through precocious (premature) puberty. It is thought that the alteration to the brain anatomy associated with hydrocephalus somehow affects the pituitary gland. Children with central nervous system (CNS) disorders, brain tumors, meningitis, and trauma are also more likely to have an early onset of puberty. Precocious puberty can lead to visible changes in the body which can be embarrassing or confusing for the child, particularly if noticed by their peers. It may also lead to age-inappropriate behavior, which can add additional stress to the situation.
Vision Problems
Some children (and adults) with hydrocephalus develop vision (eye) problems. Hydrocephalus can damage the optic nerve when intracranial pressure (ICP) increases. In one small study, 80% of infants with hydrocephalus had problems with their vision (Persson et al., 2017). These problems can range from minor decreases in visual acuity to severe vision loss. Vision problems may affect perceptual abilities, as well as hand/eye coordination, which can impact a child’s ability to both learn and play.
Some children develop eye misalignments (strabismus) that can force them to assume an uncomfortable head posture with a tilt or turn. Often children with strabismus will go through a period of wearing special glasses or an eye patch to help correct the misalignment. Sometimes eye muscle surgery is offered to improve eye alignment. Communicate with your child’s teachers around any sensitivities your child may have around their vision and treatments. They can be a valuable partner in helping classmates be supportive to your child.
Motor Skills and Coordination
According to one study, 25% of children diagnosed with hydrocephalus will have some trouble with motor function (Fernell et al., 1988). This can vary from severe paraplegia to mild imbalance or weakness. Hydrocephalus also affects fine motor control. A child’s ability to be aware of their movements and where their body is in space – their kinesthetic-proprioceptive abilities – coupled with impaired bimanual manipulation and frequent visual deficits can provide challenges for children in school and with their peers. This can look like clumsiness, bumping into things, trouble manipulating pencils or small toys, an inability to properly gauge force when throwing, writing, grabbing, etc. It can also be noticeable in recess activities and sports. They may have challenges with direction games such as Twister or Simon Says, and challenges multi-tasking if physical movement is required. (The Sensory Toolbox) The more a child struggles or is aware of these challenges, the less likely they will be to want to engage in writing, coloring, play, and physical activities.
Many children with hydrocephalus receive interventional services in preschool and early grades, to work on their coordination and motor skills. Many also receive physical and occupational therapy throughout their school years. Information about these interventional services can be found in your child’s student resource file or in their 504 plan or IEP. Communication between teachers and therapists/resource specialists is key to the child’s success – both physical and emotional.
Physical therapy needn’t just be of a formal nature. Participation in “regular” sports or dance helps develop coordination, motor skills, and social skills — and is fun, too.
Hand/Eye Coordination
Children with hydrocephalus frequently have poor hand/eye coordination and fine-motor skills. Hydrocephalus affects the kinesthetic-proprioceptive abilities of the hands, which is most often reflected in poor handwriting. The energy demand to produce handwriting is high, taking a substantial amount of attention and hard work. This challenge can be later reflected in written language production, as paper length or note-taking increases. The use of computers, tablets, note-takers, access to teacher notes, and digital recording pens can alleviate some of the stress of poor or taxing handwriting.
Physical or occupational therapy may be recommended to help develop these skills. Such therapy is most effective when it is initiated at an early age. Communication between teachers and therapists/resource specialists is key to the child’s success.