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Adolescence |
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Medical Concerns
Puberty is a time of many changes and teens with 22q11 deletions don’t
escape the normal challenges of adolescence. The
infancy and
childhood
periods are mainly characterized by the onset of certain medical problems.
Although teenagers with 22q11 Deletion Syndrome need close and periodic
medical supervision, usually there are not many new medical problems. The significant exception to this is the potential emergence in
adolescence of mental health issues.
All teenagers, with or without a 22q11 deletion, are in a well recognized
high-risk period for mental health issues. Teens often feel impulsive,
emotional, self-conscious, and insecure. It is thought that the hormonal
changes of puberty, increasing social demands, and possibly a distinct
genetic predisposition may all play a role in the development of mental
health problems. During adolescence, though sometimes earlier, teens with
22q11 Deletion Syndrome may be at increased risk for developing mental
health problems.
Although researchers are still trying to understand possible
connections between 22q11 Deletion Syndrome and an increased risk of mental
illness, it is important to be alert for behavior and emotional changes in
children and teens. This is especially important for teens and parents to
keep in mind because you may be in the best position to first recognize
these changes.
Emotional issues may range from
subtle bouts of depression and anxiety, to obsessive and/or compulsive
behaviors, to more severe types of mental illness, such as clinical
depression, severe anxiety, schizophrenia or bipolar disorder (manic
depressive disorder.) Keep in mind that only a minority of older teens and
adults will present with delusions, hallucinations, or schizophrenia. Speech
or learning disabilities may aggravate mental health problems.
If you are having some of these
feelings or are worried that you might be, talk to someone older--your
parents, a teacher, your doctor, a school counselor. They can help you
figure out what to do.
While it can feel scary to even
think about mental health problems, most mental health symptoms respond to
treatment. Treatment may include pharmacological (medicine) and/or
psychotherapeutic (talking/behavior planning) strategies. It is important to
recognize that mental health issues do require continued medical attention
and surveillance.
Current studies are
trying to identify subgroups that might be at higher risk to develop
adolescent or adult onset problems in order to develop prevention and early
intervention programs.
A trained
psychologist or
psychiatrist can help determine if
there is reason for concern. Mental health providers can offer support, information, and if
necessary access to treatment. As with all medical problems, awareness is
the necessary first step toward treatment.
In addition, please see
Mental Health (in Social
Issues).
Last Update 05-30-06
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Who May be in a Medical Team?
A Pediatrician
can perform several examinations and/or tests of your
child’s health. If any of these tests indicate the need for further follow
up, the pediatrician may refer your baby to a specialist. Some of the
specialists who may be involved in providing care are:
- Cardiologist
Cardiologists are doctors who specialize in conditions of the heart and
vascular system. Routine examinations by a cardiologist include
listening carefully to heart sounds, performing an ultrasound for the
heart (echocardiogram), performing rhythm tests (ECG) and possibly
cardiac catheterization. Cardiologists provide medical treatment plans
and interventions when appropriate.
- Psychologist/Psychiatrist
A doctor who specializes in mental health issues can evaluate and treat
psychological or psychiatric disorders.
- Counselor
A counselor, therapist, or social worker can offer guidance and support
to individuals and families.
- Geneticist / Genetic Counselor
A geneticist and/or a genetic counselor (specialists in congenital and
inherited disorders) might be helpful in establishing a diagnosis,
offering chromosomal analysis and/or FISH testing, coordinating care,
providing emotional support, keeping parents up to date with the latest
medical information, assessing recurrence risk and prenatal diagnosis.
- Endocrinologist
A doctor who specializes in glands and hormones can assist in the
evaluation and care of babies with persistent low calcium levels or
problems with growth (such as short stature).
- Neurologist
A doctor who specializes in disorders of the nervous system can evaluate
the risk for seizures.
Last Update 09-10-04 |
Developmental Issues: Some Challenges
As in
childhood, some areas of relative strength continue to be verbal
learning and processing, auditory perception and memory, and rote learning.
Some of the more common difficulties are verbal and nonverbal processing,
reading comprehension and mathematics. Abstract reasoning can be
particularly challenging, and teens with 22q11 Deletion Syndrome are often
more successful in environments where concrete thinking skills are stressed
and systematic instructions are provided. Neuroimaging studies support the
fact that specific changes in brain development and function are responsible
for the cognitive profile observed in individuals with 22q11 Deletion
Syndrome (e.g., difficulties in mathematical reasoning associated with
parietal lobe reduction and unusual patterns of brain activation in this
posterior region of the brain). For more on
Cognition and Learning Styles, see an
excerpt
from our VCFS Educator's guide.
Leaving childhood behind as high school
looms, teens face all the normal, exciting but painful challenges of a more
adult environment. Being at a new place with different people can feel
overwhelming. Although it might feel a bit awkward at first, many families
tell us that scheduling time for teens and their parents to educate teachers
about 22q11 Deletion Syndrome helps to ensure that a teens needs are met
while in school.
Transitions from class to class and subject
to subject can be particularly challenging. Attention problems are common.
Many children with 22q11 Deletion Syndrome struggle with social
relationships. Older children are often keenly aware of their cognitive
differences and that they don’t fit in with their peers. This realization
can be painful and lead to further social isolation or depression. Some
children have unrealistic ideas and expectations, low self-esteem, and/or
mood fluctuations. Continuing issues with voice quality, smaller size,
stamina, and athletic skills can also contribute to social isolation.
Last Update 06-18-04
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Developmental Issues: A Helping Hand
Helping teachers understand a teen’s
particular strengths and challenges usually facilitates a happier learning
environment. Offering teachers concrete examples of ways they can support a
teen, can only benefit the learning process. Teenagers with 22q11 Deletion
Syndrome may have particular challenges becoming and staying organized.
Organization is very important since more is expected and there is a larger
workload. Teachers and parents can help by trying to suggest and encourage a
teen in a simple daily routine. Repetition and structure can help teens to
be disciplined. Some teenagers with 22q11 Deletion Syndrome may have
difficulties with tempo and/or speed in doing certain tasks. Individual
tutoring may be beneficial to help deal with these issues. It may also help
to improve social skills. For more on
Educational Considerations and Strategies, see an
excerpt
from our VCFS Educator's guide. Some families may find it useful to print
out a copy of the handbook and pass
it onto their child's teacher. Many parents have found a tool like this
useful in communicating with teachers about their child' needs.
Often, teens and/or parents have noticed
ways to naturally compensate for a deficit. If this strategy has been even
partially successful, it might be one to enhance and modify for use in the
classroom. Periodic developmental testing performed by a trained
neuropsychologist might also prove helpful. Appropriate learning supports
might include Speech/ language therapy, Physical therapy, Occupational
therapy, Education specialists, Math specialists/ tutors, Reading
specialists/ tutors.
Last Update 06-18-04
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Social Issues: Towards Independence
Adolescence can be an awkward time for everybody—teens and
parents alike. All teens try out new roles and responsibilities, searching
for who they might become. They yearn for a sense of independence and a
chance to try out their rapidly approaching adulthood skills. Parents
struggle with the conflicting desires that their teens assume some adult
independence, while retaining the closeness and intimacy of family ties.
For resources on planning for the future, please visit
our Tools for Hands on Planning page.
Last Update 04-15-05 |
Social Issues: Networking
Many teens with 22q11
Deletion Syndrome and/or their parents report that having a medical and/or
genetic diagnosis can feel socially isolating. The
differences in life experiences and challenges, ranging from medical and
developmental, to financial, can separate and isolate teens and families
from their peers. While close friends and extended family members may try
their best to be helpful and accepting, there are significant limitations to
their ability to truly understand your family’s experience. Many families
have found that having contact with at least one other family who has the
same diagnosis can be beneficial. Some families find that participating in
local, regional and/or national organizations has been transforming to their
experience. Participation is not for everyone. Every family must determine
for itself the right time, amount, and type of participation (for options,
see the
what can I do? page).
Last Update 06-18-04 |
Social Issues: What Can Help
On a more immediate and practical level, with their parents’
encouragement, teens can expand certain social skills and strategies. Trying
out different social groups can help a teen to find a group that feels most
comfortable. Pursuing a number of different interests like art, music,
sports, dance may be useful for meeting different kinds of kids. Having
something in common with someone in a new group can help a teen to make a
special friend. It’s also a good way to feel good, feel good about you and
to develop some self-confidence.
Last Update 06-18-04 |
Social Issues: Common Issues
Some common teen struggles
include sleep problems, separation anxiety, fear of the dark, attention
challenges, anxiety and specific fears (phobias). In addition to these,
adolescents sometimes present mood problems or mood fluctuation. Physical
factors like hypernasality, speech problems, tiring easily, poor physical
performance and weight gain may represent additional challenges in personal
relationships. Teens can feel socially isolated contributing to depression.
Last Update 06-18-04 |
Social Issues: Mental Health
As in the general population, adolescence is a time when a number of mental
health concerns can surface. Those concerns can be wide ranging and usually
seeking advice and assistance from trained professionals proves beneficial
for families.
Mental health issues can be particularly challenging for a variety of
reasons. Sometimes they are more difficult to pinpoint. Teens and/or their
parents notice something is amiss but have difficulty identifying what.
Sometimes a problem is noticed but a teen and/or parents are uncertain how
serious it is or wonder if it is just a passing phase. Many teens and/or
parents are uncertain to whom and how to raise their concerns. Many teens
and/or parents feel uncertain, confused or afraid.
Emotional issues range from subtle bouts of depression and anxiety, to
obsessive and/or compulsive behaviors, to more severe types of mental
illness, such as clinical depression, severe anxiety, schizophrenia or
bipolar disorder (manic depressive disorder.) Speech or learning
disabilities may aggravate mental health problems.
Certainly not everybody with 22q11 Deletion Syndrome has mental health
problems. However, while mental health problems are very common in the
general population, people with 22q11 Deletion Syndrome have been noted to
be at higher risk.
Speak to your school
counselor or therapist if this is a problem.
Also, please see Medical Concerns.
Last Update 05-30-06 |
Social Issues: Sexuality
While many teens and parents may have already discussed the
diagnosis during childhood, perhaps adolescence is also a good time to
discuss these issues. Issues of sexual reproduction and the responsibility
involved in having sexual relationships might be appropriate topics for
discussion. Parents may want to talk to their child about the cause of their
condition and how it can be passed on from affected parents to their
children. For more on genetics and heritability, see an
excerpt from
our Introduction section. If a teen has a
learning disability, parents might be especially careful to choose clear and
simple language. Also, separating out the concepts one at a time might prove
useful. A
genetic counselor can be helpful in providing teens and parents with
emotional support as well as information, answering any questions they may
have.
Last Update 06-18-04
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Social Issues: Keep Talking
The demands of caring for medically complex
children can introduce, and/or significantly exaggerate already existing,
strains on a family’s emotional resources. Many families have told us that
talking openly about all the normal and varied concerns, fears, and
confusion can be helpful. Contact with other families, diagnosis specific
support groups, and/or counselors or therapists can aid in reducing these
strains.
Last Update 06-18-04 |
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