Developmental


22q11.2 Deletion Syndrome

Visit these blogs to read about families who have adopted a child with 22q11.2 Deletion Syndrome:

Let the Journey Begin
Madison
Ohana Means Family

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The name of this special need can be a mouthful and commonly shortened to just 22q-ts. Typically children and adults with the 22q11.2 deletion do quite well both medically, as members of a family and within their communities at large. Many are married, have children, hold jobs and live a “normal” life.

This is the most common multiple anomaly disorder in humans that is caused by a microdeletion of DNA. It is known by a number of names, including, Velo Cardio Facial Syndrome, DiGeorge syndrome, conotruncal anomalies face syndrome, Sedlačková syndrome, and more recently, 22q11.2 deletion syndrome. Nearly 200 distinct anomalies and disorders are associated with 22q. Although 1 in every 2000 people in the U.S. has 22q, this is still considered to be a rare disease and underdiagnosed.

The 22q11.2 deletion syndrome is caused by a missing section (microdeletion) of chromosome 22 which is present from the time a child is conceived. Present in 1 out of every 2,000-4,000 live births, in 1 in 68 children with congenital heart disease, and in 5 to 8 percent of children born with cleft palate, the 22q11.2 deletion is almost as common as Down syndrome, a widely recognized chromosomal disorder. No two people are ever exactly alike, even when they have the same syndrome, and not every person with the deletion is affected in the same way. Though not always present, the key characteristics of this syndrome include combinations and varying degrees of:

• heart defects
• palate differences
• feeding and gastrointestinal difficulties
• immune system deficits
• growth delay
• kidney problems
• hearing loss
• low calcium and other endocrine issues
• cognitive, developmental and speech delays
• behavioral, emotional, and psychiatric differences (ADHD, autism, anxiety, etc.)

Every child born with 22q presents a unique set of the possible 180 symptoms and rarely (if ever), does 22q simply present with only one isolated issue. But rather, each child manifests 22q in a multiple ways that are unique to them. Many times, this scattered collection of issues impedes the proper diagnosis for years. Due in large part to the fact that geneticists, cardiologists, and ENT’s have only recently begun to recognize just how often these common issues can be directly attributed to this partial deletion of the 22nd chromosome. The syndrome presents in a spectrum and some people are highly affected and experience many symptoms and many other may exhibit very few and may actually go undiagnosed lifelong or until they have a child who has the syndrome which caused them to be tested (Source).

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Resources:
Dempster Family Foundation
International 22q11.2 Foundation
Upstate Medical University
UC Davis MIND Institute
22q11.2 Deletion Syndrome
Support for Disorders of Chromosome 22
Educational Issues for Children with 22q11.2 Deletion
The Virtual Center for VCFS

Some advice from a 22q-t mom:

“It was not discovered until the 1960’s so its research history is short. Be wary scientist studies posted online quoting statistics. Without a medical professional to help explain the results it can be scary and overwhelming to read. Studies on patients who were diagnosed because they showed symptoms leave out an entire population of people that have 22q that have gone undiagnosed because they show so few symptoms. It seems like that may skew the numbers a bit? I advise anyone with a child with 22q-t to seek out a specialized clinic or genetic counselor as soon as possible. Many pediatricians are not experts in this area and the specialty clinics will help guide you. 22q Clinics: See Children’s hospitals and Universities in Seattle, Atlanta, Cincinnati, Oregon, Chicago, Illinois (Advocate), Chicago (Lurie), Colorado, Columbus Ohio, Minnesota, Philadelphia (CHOP) , Pennsylvania (Geisinger’s), Massachusetts General, North Carolina, California and Wisconsin. The best advice other 22q-t families can give you is take it one day at a time, one symptom at a time, one doctor appointment at a time. Don’t get overwhelmed with the “what if” and the future or you just might miss out on how amazing your child is right now! Touch base with other families. There is a private Facebook group open to families who have adopted a child with 22q-ts. Please contact Stephanie Rossi to join.”

 

Read blog posts about  22q11.2 Deletion Syndrome on No Hands But Ours.


Attention Deficit Hyperactivity Disorder

Visit these blogs to read about families who have adopted children with ADHD:

Hostert Happenings
Mustard Seed Farm
Ni Hao Y’all


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Attention deficit hyperactivity disorder (ADHD) is one of the most common childhood disorders and can continue through adolescence and adulthood. Symptoms include difficulty staying focused and paying attention, difficulty controlling behavior, and hyperactivity (over-activity). ADHD has three subtypes:

Predominantly hyperactive-impulsive
Most symptoms (six or more) are in the hyperactivity-impulsivity categories.
Fewer than six symptoms of inattention are present, although inattention may still be present to some degree.

Predominantly inattentive
The majority of symptoms (six or more) are in the inattention category and fewer than six symptoms of hyperactivity-impulsivity are present, although hyperactivity-impulsivity may still be present to some degree. Children with this subtype are less likely to act out or have difficulties getting along with other children. They may sit quietly, but they are not paying attention to what they are doing. Therefore, the child may be overlooked, and parents and teachers may not notice that he or she has ADHD.

Combined hyperactive-impulsive and inattentive
Six or more symptoms of inattention and six or more symptoms of hyperactivity-impulsivity are present.
Most children have the combined type of ADHD.

Children who have symptoms of inattention may:
Be easily distracted, miss details, forget things, and frequently switch from one activity to another
Have difficulty focusing on one thing
Become bored with a task after only a few minutes, unless they are doing something enjoyable
Have difficulty focusing attention on organizing and completing a task or learning something new
Have trouble completing or turning in homework assignments, often losing things (e.g., pencils, toys, assignments) needed to complete tasks or activities
Not seem to listen when spoken to
Daydream, become easily confused, and move slowly
Have difficulty processing information as quickly and accurately as others
Struggle to follow instructions.
Children who have symptoms of hyperactivity may:
Fidget and squirm in their seats
Talk nonstop
Dash around, touching or playing with anything and everything in sight
Have trouble sitting still during dinner, school, and story time
Be constantly in motion
Have difficulty doing quiet tasks or activities.
Children who have symptoms of impulsivity may:
Be very impatient
Blurt out inappropriate comments, show their emotions without restraint, and act without regard for consequences
Have difficulty waiting for things they want or waiting their turns in games
Often interrupt conversations or others’ activities.

Scientists are not sure what causes ADHD, although many studies suggest that genetics play a large role. Like many other illnesses, ADHD probably results from a combination of factors. In addition to heredity, researchers are looking at possible environmental factors, and are studying how brain injuries, nutrition, and the social environment might contribute to ADHD (Source).


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Resources:
10 Helpful ADHD Resources at National Center for Learning Disabilities
The Connected Child by Karyn Purvis
adhdmama.com
wrightslaw.com

 

Read blog posts about ADHD on No Hands But Ours.


Developmental Delay – Global

Visit these blogs to read about families who have adopted a child with developmental delays:

The Silvers Scoop
Beyond the Horizon

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Developmental Delay is a term that is used to explain when a child is not developing in the areas of:

· gross motor
· fine motor
· language and cognition
· social or emotional skills.

When a delay occurs in many or all of these areas, it is called a “global developmental delay.” There are many different factors that can affect a child’s development. Developmental delays may be temporary or permanent depending on the cause of the delay (Source 1 and 2).

Resources:
Early Intervention List of Favorite Resources
China Adoptive Mom Speech/Language Delay Facebook Support Group
CHOP Adoption and Delays
Medscape
Understanding Child Development and the Impact of Adoption
The Impact of Early Orphanage Life on Development
She’s Ours

 

Read blog postsabout Global Developmental Delays on No Hands But Ours.


Developmental Delay – Language

Visit these blogs to read about families who have adopted children with language delay:

Five of My Own
Living the Abundant Life
The Vandalgrads

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A language delay is a communication disorder. A child is said to have a ​language delay if he or she does not meet the language developmental milestones for their age. Language may be developing, but it is at a slower rate than the norm for the child’s age. ​ ​It is important to note that a language delay does not necessarily mean the same thing as a speech impairment. They may be connected, but these terms are not used interchangeably.

Some causes of language delay are​​:

•Developmental speech and language disorder is a common reason for speech/language problems in kids. This is a learning disability that is caused by the brain working differently. These kids may have trouble producing speech sounds, using spoken language to communicate, or understanding what other people say. Speech and language problems are often the earliest sign of a learning disability. Learn more about language-based learning disabilities.
•Hearing loss is often overlooked, and easily identified. If a child is speech/language delayed, their hearing should be tested.
•Intellectual disability is a common cause of speech and language delay.
•Extreme environmental deprivation can cause speech delay. = If a child is neglected or abused and does not hear others speaking, they will not learn to speak.
•Prematurity can lead to many kinds of developmental delays, including speech/language problems.
•Auditory Processing Disorder describes a problem with decoding speech sounds. These kids can improve with speech and language therapy.
•Neurological problems like cerebral palsy, muscular dystrophy, and traumatic brain injury can affect the muscles needed for speaking.
•Autism affects communication. Speech/language/communication problems are often an early sign of autism.
•Structural problems like cleft lip or cleft palate can interfere with normal speech.
•Apraxia of speech is a specific speech disorder in which the child has difficulty in sequencing and executing speech movements.
•Selective mutism is when a child will not talk at all in certain situations, often school.

​Language delays can be receptive, expressive, or a combination of both. A receptive language problem occurs when a child has difficulty understanding language. An expressive language disorder occurs when the child has difficulty expressing themselves. ​​Some children have a language delay that involves a combination of both expressive and receptive issues.

Some possible symptoms of language delay can be: not babbling by the age of 15 month​s​, not talking by the age of two, an inability to speak in short sentences by age three, difficulty following directions, poor pronunciation or articulation, difficulty putting words together in a sentence, and leaving words out of a sentence (Source 1 and 2)​.

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Resources:
Language Development in Internationally Adopted Children
Your Adopted Child’s Speech and Language Development
International Adoption and Speech and Language Development
Language Development
Understanding the Extent of Speech Delays

 

Read blog posts about Language Delay on No Hands But Ours.


Down Syndrome

Visit these blogs to read about families who have adopted a child with Down syndrome:

Our Eyes Opened
Eager Feet
Jenifer Parris
A Table for Six
A Miracle for Meg
Ni Hao Y’all
Mama on a Wire
Diplofam

Visit these blogs to read about families who have a biological child with Down syndrome:

Enjoying the Small Things
Noah’s Dad


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Read an excellent Q and A post on adopting a child with Down syndrome here.

Down syndrome is the most common chromosomal condition. Human cells typically have 23 pairs of chromosomes, half from each parent. Down syndrome occurs when cells have an extra copy of chromosome 21. In the vast majority of cases, Down syndrome is completely random and not hereditary.

People with Down syndrome tend to have distinct physical characteristics, such as an upward slant to the eyes, small stature, low muscle tone, and a deep crease across the palm. Most have mild to moderate cognitive delays. They are also at an increased risk for certain medical conditions such as heart defects, leukemia, Alzheimer’s disease, and thyroid conditions. Their current life expectancy is 60 years.

Children with Down syndrome are able to attend public and private schools. Some are able to attend a regular classroom for all subjects, while others may need a full-time special education classroom. Most schools work to have children with Down syndrome fully included as much as possible. Many people with Down syndrome graduate from high school and are able to hold a job as adults.


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A few things for parents considering adopting a child with down syndrome to consider:

  1. Possible medical complications
  2. A wide range of possible cognitive and developmental delays
  3. Partnering with the child’s school to develop an individual education plan
  4. The possibility of the child never being completely independent as an adult
  5. Dealing with stigma, from extended family and the general public
  6. The joy that a person with Down syndrome brings to a family!

For much more detailed information, please see National Down Syndrome Society.


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Resources:
National Down Syndrome Society
Reeces Rainbow
Down Syndrome Diagnosis Network
Rainbow Kids
International Down Syndrome Coalition

 

Read blog posts about Down Syndrome on No Hands But Ours.


Malnutrition

Visit these links to read bout families who have adopted a child with malnutrition:

Five Chili Peppers
Our Eternal Treasures

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Children who have difficult beginnings, exemplified by those living in an orphanage, often present with nutritional deficiencies which frequently leads to malnutrition.  this lack of basic nutrition can occur for any of the following reasons:

  • Inadequate maternal prenatal and perinatal health care; poor prenatal diet.
  • Premature infant birth; low or very low birth weight resulting in underdeveloped infants.
  • Inadequate breastfeeding.
  • Animal milk or milk products offered instead of fortified infant formula.
  • Diluted or improperly prepared infant formula, which decreases the nutritional adequacy of the formula or introduces food safety risks.
  • Premature introduction of solid foods to the infant diet.
  • Insufficient amounts of food and/or lack of essential nutrient-dense foods.
  • Insufficient feedings and/or inappropriate feeding practices in the orphanage, particularly for those children with special needs.
  • Inadequate exposure to sunlight, which inhibits vitamin D production — a crucial vitamin that facilitates calcium absorption for bone growth.
  • Cultural food practices introduced too early. For example, tea is often served with meals in many countries. Though tea has many health benefits, when consumed in large quantities as part of a nutrient-poor diet, naturally-occurring substances in tea may inhibit the absorption of important vitamins and minerals.
  • Lack of fortified foods, beverages, and vitamin supplements due to high cost or unavailability.
  • The stress of transitioning from birth mother to secondary care provider and then to the new family can disrupt a child’s natural feeding cycle, resulting in nutritional issues.
  • Rapid post-adoption growth places enormous demands on the young body’s limited nutritional stores, often resulting in nutrient deficiencies (Source).

The picture below shows a precious little girl with severe malnutrition two weeks before coming home (1), in her passport picture on gotcha day (2), 6 months after coming home (3), and 18 months after coming home (4):

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Resources:
Adoption Nutrition
Malnutrition and Inadequate Growth
Contributing Factors of Malnutrition
Adopted Children with Severe Malnutrition Facebook Group
Why Internationally Adopted Children are at Risk for Malnutrition Course
Hope and Healing through Nutrition
Rainbow Kids: Rickets

 

Read blog posts about malnutrition on No Hands But Ours. (story coming soon!)


Poor Brain Development

Visit the following blogs to read about families who have adopted children with this special need:

Loved and Spoken For
One More Ladybug

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Poor Brain Development or Brain Damage Syndrome is a broad diagnosis often applied to a child who presents with developmental delays beyond what is typical for institutionalization and/or symptoms that are interpreted to be neurological in nature. Damage to the tissue and structure of the brain can be a result of many factors. They include: Physical Injury and Concussion, Lead Exposure, Oxygen Deprivation, Malnutrition, Exposure to Environmental Contaminants, etc. The list of symptoms from brain damage may include: cognitive delay, speech delay, neuromuscular/movement disorders, spasticity, chronic headache, ADD/ADHD, sleep disturbance, mood/behavior difficulties, memory issues, vestibular issues, balance disorders, nystagmus, etc.

The referral file may or may not include a description of the delays that lead to this diagnosis. There may have been a CT Scan done of your child’s head. It would not be unusual for the CT Scan report to be within normal limits. MRI provides a much more detailed and clear picture of the tissue and structures of the brain. Working through this diagnosis is much like putting together the pieces to a puzzle. The medical specialists that will help you will be Pediatric Neurologists, Neuropsychiatrist and Therapists as indicated by your physician. Therapy modalities may include Speech Therapy, Physical Therapy, Occupational Therapy and Behavioral Therapy. You may be able to access Early Intervention Services through your community if your child is under three years old. If your child is over three years old there are a variety of treatment modalities that may be provided through the school system.

Due to rising awareness of issues resulting from sports related concussions/brain injury treatment for these children is an emerging science right now. There is a hotbed of information that can be accessed on the internet or through your local library. The medical community is making great strides in symptom management, treatment and prognosis. The brain injured child will more than likely need an examination by a Pediatric Neurologist, MRI to establish a baseline, a neuropsych evaluation to determine their unique abilities and challenges and subsequent treatment to address issues that are pinpointed. At present time there is no one treatment for every child with this diagnosis. Treatment is individualized according to the needs of the child.

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Resources:
Orphan Nutrition
Brain Injury Association
Pediatric Brain Injury
Pediatric Traumatic Brain Injury

 

Read blog posts about poor brain development on No Hands But Ours.


Sensory Processing Disorder

Visit these blogs to read about families who have adopted children with Sensory Processing Disorder:

Rage Against the Minivan
My Cup Overfloweth
The Lang Gang Loves

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Sensory Processing Disorder (SPD) is a neurological disorder in which the sensory information that the individual receives results in abnormal responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Sensory information gets “mixed up” in the brain and therefore the responses are inappropriate in the context in which they find themselves. Children whose systems do not properly process the senses are at a much higher risk to be reactive to their senses. Children with SPD are either sensory avoiders or seekers.

There are eight sensory systems:
Visual-the visual system
Auditory-system responsible for hearing
Tactile-system for processing touch information from the body
Olfactory-system that processes smell
Gustatory-system responsible for the sense of taste
Vestibular-system that contributes to balance and orientation in space
Proprioception-system that provides sense of muscle and/or joint movement
Interoception-sensations related to the physiological/physical condition of the body (i.e. hunger & thirst)

SPD can affect anyone and studies indicate that 5% to 16% of children exhibit symptoms of SPD. The exact cause of SPD has not yet been identified. Studies and research suggest that SPD is often inherited. Prenatal and birth complications as well as certain environmental factors have been implicated as causal in SPD. Dr Karyn Purvis, author of The Connected Child, states “children from hard places often experience altered brain development which impacts the way in which they process sensory data.”

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Resources:
The Out-Of-Sync Child by Carol Kranowitz
The Connected Child by Karyn Purvis
Sensational Journeys by Hartley Steiner
Raising a Sensory Smart Kid
Facebook Support Group
Project Hopeful

 

Read blog posts about Sensory Processing Disorder on No Hands But Ours.


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The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.