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The following are questions commonly posted on our discussion boards,
along with answers and advice from responding members. In many cases,
member answers have been expanded on from other sources, and relevant
links have been added for more information. These answers are meant only
as a helpful guide and a resource for further information; each individual
situation is unique and may need a tailored solution. Your treating psychiatrist
is always a good person to ask when you have specific questions pertaining
to your own case.
If you don't find what you're looking for here, please visit the Childhood
Schizophrenia Discussion Board (see the righthand menu column on the Schizophrenia.com
homepage ) and post your question. Our members are usually very generous
with their advice and support.
Index of Questions:
What is childhood-onset schizophrenia? How is it
different from adult schizophrenia?
How can I tell if my child is developing early-onset
schizophrenia? How early can it be identified?
How do I respond to my child's symptoms (particularly
hallucinations)?
The Next Steps: What if my child needs an evaluation or
treatment?
Received a Diagnosis - now what?
Prescription Medications - what to expect
What antipsychotic medications are there? What do
they do? What are the side effects?
How will medication help? How will I know if it's
working?
Are there any other treatments besides medication?
How can I help my child understand his/her condition?
How do I explain the illness to my other children?
How can I help them cope with their brother/sister's condition?
How can I plan for my child's financial needs, now
and in the future?
What can I do if my child is having problems at school
(social or otherwise)?
For Teens: Who you can talk to, where you can get help
What is childhood-onset schizophrenia? How is it different from adult
schizophrenia?
Schizophrenia affects children much less frequently than it does adults;
about 1 in every 40,000 children is diagnosed, as opposed to 1 in every
100 adults. In general, the earlier a diagnosis is made, the more severe
the disorder tends to be. Managing schizophrenia in children can also
be more difficult, although there are many new antipsychotic medications
that are proving to be helpful. The official symptoms are the same as
those for adult schizophrenia (see Childhood-Onset
Schizophrenia: Diagnosis). The symptoms in children can overlap
quite a bit with the common symptoms to pediatric bi-polar disorder,
autism, or Asperger's syndrome.
For more general information, see the Schizophrenia.com
childhood-onset page,, the NMHA
childhood-onset factsheet, or a formal
write-up of Early Onset Psychosis (separate write-ups for autism,
schizophrenia, and schizoaffective disorder).
How can I tell if my child is developing early-onset schizophrenia?
How early can it be identified?
Although very young children can start showing signs of schizophrenia,
it's extremely rare to get an official diagnosis before the age of 5.
Because there is so much symptom overlap in pediatric psychiatric disorders,
doctors may hold off on giving an official diagnosis or may change diagnoses
several times as the child ages. There are signs and symptoms that a
parent can watch for; however, it's important to keep the whole picture
in mind. 99% of children who exhibit some worrisome behaviors (night
terrors, excessive anxiety, mood swings, etc) will turn out to be completely
normal. The following are not meant to diagnose a child, only to be
taken into account if you're concerned or wondering whether to have
your child evaluated. Another thing to take into account is whether
schizophrenia (or another psychiatric disorder) runs in your family.
Signs commonly seen in children later diagnosed with schizophrenia
(by age category): (Note: These are NOT unique indicators of schizophrenia,
and are very often seen in normal children as well. Consider your own
child's entire history before becoming concerned).
Infants: trouble eating or sleeping, poor muscle tone (also
known as hypotonia or 'floppy baby' syndrome - such a baby lies very
flat, with arms and legs completely relaxed), fear of quickly moving
objects, inactivity.
Toddlers: wandering alone at night while parents are sleeping,
poor/slumping posture or "leaning" behavior (always leaning
against something), short-attention span that is mentioned by teachers
or caregivers, always has a "worried" or "distracted"
expresion, overly fearful/anxious about new things (this is also a normal
child development phase, the difference is usually the severity of the
fear) - common pre-schizophrenia fears can include fear of hair cuts;
fear of the dark; fear of labels on clothing; fear of things that move,
a tendency to move or play with toys in a repetitive (rather than imaginative)
manner, a history of high fevers between the ages of 2 and 5.
5-6 years old and older: May start having hallucinations even
at this early age - common auditory hallucinations are noises that sound
like bangs, clangs, explosions, or loud scrapes, crashes like door slamming,
or whispers, while common visual hallucinations can look like dark streaks
or wiggles (sometimes interpreted as snakes), rolling balls, or streaks
of light on a dark background. Very inner-directed; may talk, smile,
or giggle at nothing. The child may put his hands over his ears at random
times, or may comment things like "there's a girl/boy in my head
saying..." or "everybody's saying...."
Parents may wonder how to distinguish between schizophrenia and pediatric
bi-polar disorder - the common distinction is that bipolar kids have
a distinct mood component to their illness, and may explode based on
emotional triggers like being told "no". Children with schizophrenia,
on the other hand, are more likely to have an explosion or a melt-down
because of sensory-overload or frustration. To someone watching, these
tantrums will seem to be "out of the blue," unrelated to anything
around them.
Other resources with information on childhood schizophrenia,
diagnostic symptoms, risk factors, and things to watch for: (Two sites
are specifically about bi-polar disorder, but much of the information
is still relevant since there is so much overlap between the two illnesses
in children).
--Is
my child at risk for developing Schizophrenia?
--Recommended
books about child psychiatric disorders
--Risk factors for
developing schizophrenia, and prevention suggestions
--Child and Adolescent
Bipolar Foundation
--The Bipolar Child
Highly Recommended Books:
1. Childhood
Schizophrenia by Sheila Cantor.
2. The
Bipolar Child by Dr. Dimitri Papolos.
Helpful online audio/video files:
1. Children
and Mental Health (Voices in the Family public radio program)
2. Mental
Health of Children, Parts I and II (Voices in the Family public
radio program)
3. Early
Detection and Intervention in Schizophrenia (UCLA Grand Rounds)
How do I respond to my child's symptoms (particularly hallucinations)?
Any parent would be shocked and frightened if their child started talking
about things that no one else could see or hear. However, keep in mind
that you want your child to be open with you about these experiences,
so that you can help them control their symptoms. A child that is told
"those things don't exist" or "that doesn't happen"
with no opportunity for more discussion may just stop telling people
about what they see.
Try to respond in a way that leaves the door open for more communication.
For example, if your child tells you about things they see or hear that
aren't there, try saying "I'm sorry that happened to you - tell
me what you see, and how you feel about it." This acknowledges
their experience as "real" (to the child, it's very real)
and something that happened to them, without giving a false confirmation
that other people can also see these things.
A child with a mental illness can have quite a hard time communicating
about anything. Encourage and reward any communication they offer about
their symptoms.
Another thing that parents with mentally ill children have to deal
with a lot is an excess of meltdowns or temper tantrums. Theirs is a
more difficult situation than the average parent, because: 1) the tantrums
may or may not have an obvious trigger, and 2) children (for that matter,
anybody) with psychiatric disorders tend to be hyper-sensitive to correction
or criticism. Parents can think of these children sometimes as kids
with distractions; the sensory areas in their brains are getting overloaded,
and it's overwhelming them. A quiet, low-stress environment with a minimum
of stimulation is helpful. A simple daily routine can help keep children
focused on one thing at a time, and keep them from getting overwhelmed.
And, as one parent put it, "Reassurance, love...those do a lot
too."
The Next Steps: What if my child needs an evaluation or treatment?
The first step, once you've determined your child's symptoms are severe
enough to be worrisome, is to make a doctor's appointment. You can start
with a regular pediatrician appointment, because generally it's standard
to rule out a host of other disorders before you are referred to a psychiatrist.
The pediatrician should give your child a full check-up; in addition,
you may want to get an EEG or MRI to rule out seizure disorders, and
some lab tests to determine pituitary and thyroid function.
Before the first appointment, prepare some materials to discuss with
the doctor. Keep a journal of symptoms and behaviors that you want to
discuss (see The
Importance of Keeping a Diary on Schizophrenia). Make a list of
questions that you want answered. "Choosing
the Right Mental Health Therapist" (provided by the United
Advocates for Children of California) has an easy-to-follow procedure
list for appointments, as well as some suggestions for questions you
might ask.
Received a Diagnosis - now what?
Whatever diagnosis your child is given, whether it is schizophrenia
or something else, know that there are many many parents out there with
the same questions, concerns, and problems that you face. There is a
wealth of information and support available to you. Here are some things
to try first:
1. Educate yourself and your family (and of course, your child) as
much as you can about the illness, the treatments, and long-term prospects.
Greater understanding can help alleviate fears and can make communication,
treatment programs, and day-to-day coping much easier. See
Recommended Books for a list of helpful, reviewed reading material.
2. Build a support network as soon as you can of other families with
similar experiences. The discussion boards at schizophrenia.com are
a good place to start, but a local support group can be a long term
source of relief and resource for you during difficult times. The
National Alliance for the Mentally Ill has local chapters in every
U.S. state - visit their website and find one near you. Also, consider
taking a Family-to-Family class (also through NAMI), a free 12-week
education course designed for (and taught by) family caregivers of children
with severe mental illnesses. This class is highly recommended by many
parents on schizophrenia.com. See the Family-to-Family
website for more program information and class schedules
Treatment options and questions:
Prescription Medications - what to expect:
After your child is officially diagnosed, he/she will almost certainly
be started on a prescription psychiatric medication (for schizophrenia,
it will be a form of antipsychotic or neuroleptic). Medication can greatly
decrease symptoms and help a person return to a functional level; however,
every case is unique, and medications are not perfect. It will likely
take a long, frustrating trial-and-error process before you and the
doctors find a treatment regiment that works best for your child.
When a psychiatrist prescribes any medication, ask what symptoms it
primarily treats, what the common side effects are, what dosage he/she
is prescribing, and how long it will take to start working. Keep track
of every medication (and at what dosage) your child is on: how he/she
reacts, what side effects it causes, which symptoms get better and which
get worse. A journal (the same journal where you write down your child's
symptoms and behaviors) is an excellent place to do this.
Don't be surprised if the doctor keeps switching medications, or adjusting
dosages. They are not experimenting with your child; trial-and-error
is the only way to eventually find a combination that works. Medications
are never sure-fire: a medication can work for awhile and then stop
working, or one that you tried previously may work at some point in
the future. You can help this process with feedback about the different
medications (see paragraph above).
What antipsychotic medications are there? What do they do? What
are the side effects?
See the Medications
section of schizophrenia.com for a complete list of 1st and 2nd generation
antipsychotics, their mechanism of action in the body, and their common
side effects. Another helpful resources is "Your
Child and Medication" (from the United Advocates for Children
of California).
See also an online UCLA grand rounds presentation - Antipsychotics
in Special Populations: Pediatrics and Adolescents.
How will medication help? How will I know if it's working?
An antipsychotic medication can take weeks or even months to start
working at full strength, so be patient and keep recording things in
your journal. Once you find a medication that seems to work, the voices/hallucinations
that your child experiences may gradually fade away and disappear -
or they may not. Sometimes these voices quiet down to a point where
they are not harmful or debilitating, and many people with schizophrenia
make a decision at this point that living with these quieter voices
in the background is preferable to going through the pain of more medication
and more side-effects. This is a choice that your child will eventually
make for him/herself.
Are there any other treatments besides medication?
Right now, antipsychotics are the best tool we have to control the
symptoms of schizophrenia. However, they are far from the only treatment
option. Many patients and their families choose supplemental therapies
(these can include psychosocial or cognitive therapy, rehabilitation
day programs, peer support groups, nutritional supplements, etc). In
the case of therapy, some research has shown that psychotherapy and
medication can be more effective than medication alone (however, the
same study noted that psycotherapy alone was NOT a substitute for medication).
For some supplementary treatments options (as well as "alternative
therapies" that have been disproved), see Other
Treatments on the schizophrenia.com homepage. Ask your child's psychiatrist
before starting any treatment in conjunction with medication.
How can I help my child understand his/her condition?
Before you can talk openly with your child and address his/her questions
and fears, you need to have a good understanding yourself of what schizophrenia
is, how it is treated, and how it affects children. A gold-standard
reference for any family (recommended by just about everyone on schizophrenia.com)
is Surviving
Schizophrenia by Dr. E. Fuller Torrey. Many other recommended
books and educational resources are available at http://www.schizophrenia.com/media/.
Your local NAMI chapter, mental health center, or hospital is also a
good resource for information.
What, and when, you tell your child should be based on his/her maturity,
stability, and ability to understand. Answer any questions they have
honestly, and never avoid the subject. Some parents followed their children's
lead, and waited until they were old enough to start asking questions
or looking for information themselves. One parent says she talks about
her son's schizophrenia diagnosis that way she talks to her kids about
sex: in language they will understand, not too much too early, and in
positive (hopeful) language.
There are a few books about mental illness that are written specifically
for children. Many of these are unfortunately out of print, but you
may be able to find them at the library, at a used bookstore, or by
contacting the publisher directly. Two books that you can order directly
from websites are Catch
a Falling Star (An illustrated book about a boy who develops
a mental illness and learns coping skills from a friendly dragon) and
Edward
the Crazy Man
(a book that deals with schizophrenia and homelessness). See also
other books for
children at www.schizophrenia.com/media/.
How do I explain the illness to my other children? How can I help
them cope with their brother/sister's condition?
To some extent, you can use the same guidelines that you used in talking
to your child with schizophrenia. However, siblings will naturally have
different feelings and issues (ranging from curiousity, to embarrassment,
to fear and guilt) that you will need to address. Be as open with them
as is age-appropriate, and answer their questions honestly. Schizophrenia
is a disease that currently has no cure and will not go away, so pretending
it is something else or doesn't exist is ultimately pointless and harmful
for everyone involved.
It's important to keep siblings, especially as they get older, informed
about the disease progression, treatment plans, and long-term care options.
Not only are they a source of love and support for their brother or
sister, they may eventually be a primary caretaker someday, depending
on how severe the illness is. Talk with them about what this might involve;
if they cannot take on the responsibility, you can make other arrangements
ahead of time.
When your other children are old enough, explain that schizophrenia
is partly a genetic disorder, and talk with them about the possibilities
of inheritance and the risks if they have children of their own someday.
If it will help, make an appointment with a genetic counselor to discuss
these issues. See Heredity
and Genetics of Schizophrenia for family risks.
An excellent publication, sponsored by the Sibling Support Project,
has
points that siblings of special needs kids would especially like their
parents to know.
See also the Brother and Sister FAQ guide, which addresses special
issues related to siblings.
How can I plan for my child's financial needs, now and in the future?
Some people with schizophrenia are able to control their symptoms adequately
with medication, and eventually live independently, manage their own
treatment plans, and hold down part-time jobs. For others, this is simply
impossible. After your child gets older and has been in treatment for
awhile, you will need to ask some hard questions about what their functional
level is, and if they will need long-term care or a guardian as an adult.
There are some things you can do in the meantime to make the eventual
transition easier, and feel more secure about the future:
1. Work out custody and guardianship policies with close relations
or friends. Keep a notarized copy for yourself, and give other copies
to the future guardian, the hospital that administers care, the child's
psychiatrist, your attorney, and any other relevant party.
2. Take out a life insurance policy
3. Set up a bank account in your name that is officially designated
for your child; when you die, that money is turned over to the legal
guardian acting on the child's behalf, not the child.
4. Consider setting up a trust with an insurance company or bank.
5. A handicapped child under age 18 may receive Supplemental Security
Income (a form of social security). if the child and parent meet income
and resource requirements. Those eligible for SSI may also be eligible
for benefits such as housing programs, Medicaid, vocational rehabilitation,
and food stamps. Children living at home (in some states) can apply
for an extra benefit under "living arrangements", which is
meant to offset some of the costs of providing extra attention and care
to a special-needs child living at home. NOTE: Many people are denied
on their first application, but are later accepted through an appeals
process. See the Social
Security Association website or http://www.schizophrenia.com/family.ssi.htm
for details.
See the General FAQ guide for more
information on this topic (including planning for housing and financial
matters), or books
about planning for your child's future.
What can I do if my child is having problems at school (social or
otherwise)?
The negative symptoms of schizophrenia include an inablitiy to concentrate,
disorganized thinking or behavior, emotional withdrawal, inability to
read social cues, and excessive fatigue. All of these can have adverse
effects on a child's ability to learn and grow at school. Even if the
positive (psychotic) symptoms are well controlled by medication, your
child might need extra help and support from their school system, or
a completely different educational program.
Here are some things parents should expect from any child with a psychiatric
disorder at school:
- Expect the child to miss a lot of school, due to medication issues,
allergies, the illness itself, or a combination of factors. Moreover,
these children don't tend to have normal amounts of stamina, and may
get sick more often.
- If the child is under a lot of pressure or stress at school, this
can lead to relapses or hospitalization.
- The child's attention, energy, and abilities will tend to wax and
wane in cycles. Parents of schizophrenia.com suggest that if a child
seems to be having an "off day," sympathy and encouragement
will make much more of a difference than forcing the child to "shape
up."
- Grades that focus on what the child does, rather than does not,
do will be the most helpful (whereas the other kind might be destructive,
since kids with schizophrenia can be very sensitive to any form of
criticism).
- Medications might make your child less tolerant of heat and sunshine.
- The noise and bustle of a normal school day might easily get overwhelming,
and the child needs a refuge
- If a psychotic episode or a breakdown occurs at school, the best
thing to do is stay absolutely calm, speak softly, and make yourself
available to what the child seems to need at that moment. Do not try
and talk them out of it, point out they are being ridiculous, or berate
them for their behavior. Don't try and touch or hold them unless the
child seems to want it. You will eventually learn the best way to
deal with your child's behavior, and this is useful info to share
with teachers and other school administrators as well
With the above in mind, many parents have chosen to put their children
in a special needs or Individual Education Program. Some of these kids
have expressed relief at being put in a school with others "like
them." Special programs also put a large emphasis on developing
and nurturing social skills, which the child can then practice in after-school
settings and extracurricular activities. Other parents have opted to
homeschool their children, as the stimulation and stress of a mainstream
school was completely overwhelming and made symptoms worse. These parents
found it much easier for everyone to keep themselves in the role of
mentor/supporter/caregiver rather than teacher, and so contracted qualified
homebound teachers through the school district
There are also options and accommodations available within the mainstream
public school systems as well. A doctor or psychiatrist can recommend
evaluation testing to get your child assigned a special-education status.
You can then work with the school system, health professionals, and
educational advocates to find an individualized program tailored to
your child's needs. Some options include partial-days, a smaller class
size, or homeschooling with weekly teacher meetings.
Schizophrenia.com parent suggestions for helping a child with schizophrenia
at school:
1) Help your child's teachers and other school administrators understand
the illness by providing them with plenty of reading material ahead
of time. Books that have helped in the past include: "Teaching
the Tiger - A Handbook for Individuals Involved in the Education of
Students With Attention Deficit Disorders, Tourette Syndrome, or Obsessive-Compulsive
Disorder (Marilyn P Dornbush and Sheryl K Pruitt); "Children
with Schizophrenia" (spiral-bound easy to read reference book
- order from Education Services Room 0601, Glenrose Rehabilitation
Hospital, 10230-111 Avenue, Edmonton Alberta, T5G 0B7. Cost is $12
canadian dollars + $5 for shipping).
2) Help your child form a supportive relationship with the school
nurse or counselor - their private offices can be a refuge during
the day. One schizophrenia.com parent's daughter made a deal wtih
the school counselor that she could run to her office any time she
needed a quiet place, without the teacher's permission. This gave
her a safe place at school, and a means of avoiding a potential meltdown
or blow-up.
Resources to help you plan your child's education:
http://www.wrightslaw.com -
information about laws and advocacy for specil needs and disability
education.
http://www.ideapractices.org/law/index.php
- know your rights and your child's rights under the Individuals
with Disabilities Education Act.
See a sample Individual Education
Program, which can be used as a model and adjusted for your child's
needs
For Teens: Who you can talk to, where you can get help
Lots of pre-teens and teenagers are understandably afraid to tell anyone,
even their parents or best friends, about the odd or scary things they've
been experiencing. For that matter, a lot of adults are afraid to tell
anyone also. You'll find that while some people won't understand, many
more people will be supportive and helpful to you.
Having a psychiatric illness is just like having diabetes - something
has gone wrong in your body that you have no control over, and you need
to find out what it is so you can get treatment and help yourself feel
better. No one tells people with diabetes that they're to blame for
their illness, or that they're weak for taking insulin every day. By
getting yourself treatment, you are taking responsibility for your own
health like any mature adult.
Believe it or not, parents are pretty observant about their kids. That's
their job. They've probably already noticed that something's been on
your mind or been bothering you lately. Don't be afraid to answer honestly
when they ask how you're doing. Tell them that your experiencing some
symptoms, and you need a doctor's help to figure out what's going on
and how you can deal with the situation. There is no reason to think
that the symptoms will just go away if you ignore them, and every reason
to think that they will continue to get worse. Be serious and insistent
- if you take yourself and your health seriously, your parents will
too.
If you can't find the words to tell them, try looking for information
in books, or personal stories on the internet that sound like what you're
going through. Share what you find with your parents to help them understand.
If you absolutely can't tell your family, find someone else that you
trust - a school counselor or nurse, a clergy member, a friend or a
friend's parent. Ask them to help you make a doctor's appointment.
If all else fails, try getting advice from a helpline or support organization.
You can call NAMI's Information and Referral line at 1800-950-NAMI,
describe your symptoms and feelings, and get advice on what to do next.
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