Medical Special Needs Resources



Medical Special Needs Resources

Blood Conditions

Hemophilia |
Thalassemia

Cranio-facial Conditions

Cleft lip and palate |
Goldenhar Syndrome |
Hemifacial Microsomia |
Microcephaly

 
Developmental Conditions

Apraxia |
Delayed Language Development |
Down Syndrome (Trisomy 21) |

Digestive Conditions

Anal Atresia/Imperforate Anus |
Cyclic Vomiting Syndrome

Ear and/or Hearing Conditions

Deaf or Hearing Impairment |
Eye and/or Vision Conditions |
Congenital Cataracts |
Exotropia/Esotropia |
Glaucoma

Heart Conditions

Atrial Septal Defect |
Coarctation of the Aorta |
Congenital Heart Defect (CHD) |
Heart Murmur |
Patent Ductus Arteriosus |
Tetralogy of Fallot |
Transposition of the Great Vessels |
Ventricular Septal Defect

Infectious Diseases

Hepatitis B |
Hepatitis C |
Tuberculosis

Central Nervous System

Agenesis of the Corpus Callosum |
Arachnoid Cyst |
Cerebral Palsy |
Cortical Dysplasia |
Craniosyntosis |
Hemiparesis/ Hemiplegia |
Hydrocephalus |
Macrocephaly |
Neurofibromatosis |
Schizencephaly |
Spina Bifida |
Sturge Weber |
Seizure Disorder |
Tethered Spinal Cord

Orthopedic Conditions

Amniotic Banding |
Arthrogryposis |
Congenital Talipes Equinovarus (Club foot) |
Developmental Dysplasia of the Hip |
Ectrodactyly |
Fibular Hemimelia |
Macrodactyly |
Osteogenesis Imperfecta |
Polydactyly |
Radial Club Hand |
Scoliosis |
Syndactyly |
Torticollis

Skeletomuscular Conditions

Congenital Myopathy |
Dwarfism |
Hypotonia

Skin Conditions

Albinism |
Hemangioma |
Ichthyosis |
Nevus |
Teratoma

Urogenital Conditions

Ambiguous Genitalia |
Cryptorchidism |
Hypospadias |
Renal Agenesis

Visual Impairments

Amblyopia |
Congenital Nystagmus |

 

Blood Conditions

 



Hemophilia:

 


Hemophilia is a disease where your blood is incapable of clotting properly causing prolonged bleeding. Hemophilia is a lifelong disorder, but with proper treatment most individuals are able to live a healthy and active life. There is currently no cure for Hemophilia, but doctors use DDAVP to release more clotting factors that stop excessive bleeding. Research is being done to find a gene replacement for individuals with Hemophilia.

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Thalassemia:

 


Thalassemia is an inherited blood disorder where the body makes abnormal amounts of hemoglobin and fewer red blood cells. If left untreated your child may experience slow growth, heart problems, enlarged spleen, and bone deformities. Treatment varies based on the severity of the condition. Mild cases may require medication or supplements, while more severe cases may require regular blood transfusions.

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Cranio-facial Conditions

 



Cleft lip and palate:

 


A Cleft palate is an opening in the roof of the mouth where the two sides of the palate did not fuse together. A child born with this condition often requires surgery, dental care, and speech therapy. This condition is highly treatable and in most cases the child is able to live a healthy and happy life.

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Goldenhar Syndrome:

 


Goldenhar syndrome most often affects the head, face, and spine and the symptoms of this condition vary greatly. Typically, individuals with this condition have characteristics such as underdeveloped facial muscles or cheek bones, small or malformed ear canals, underdeveloped organs, or small and flat jaws. Generally reconstructive surgery is necessary if a child is diagnosed with this condition.

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Hemifacial Microsomia:

 


Hemifacial Microsomia begins before birth as the child’s facial features begin to develop. One side of the child’s face develops at a slower rate than the other and the affected side will grow more imbalanced during the pregnancy and continues throughout childhood. The areas of the face that are most commonly affected are the mouth, ear, and jaw areas, but the severity of symptoms vary. The cause of this condition is unknown, but it is thought to be an inherited condition. Reconstructive surgery is the most common and effective treatment.

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Microcephaly:

 


Microcephaly is a rare genetic condition where an infant’s head is significantly smaller than the head size of an average infant of their age. Children with this condition will sometimes be of normal intelligence, but often times they will experience developmental delays, difficulties with coordination, seizures, mental retardation, and hyper activity. There is generally no other treatment except for Craniosynostosis, and in most cases treatment is focused on managing your child’s condition.

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Developmental Conditions

 



Apraxia:

 


Apraxia is a motor speech disorder that often becomes apparent as a child begins to talk. A child with this disorder will have trouble planning and programming speech movements. The causes of Apraxia are not completely understood, but research suggests that environmental factors such as exposure to toxins and pollutants before or after birth, and neurological damage caused by infection or illness could result in Apraxia.

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Delayed Language Development:

 


A language delay is when your child is developing their language properly, but at a slower rate than other children. Identifying speech problems early on is the most important thing a parent can do for their child. Treatment can begin before the child is speaking, and it should be individualized and age appropriate for your child.

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Developmental Delay:

Developmental delay is when your child doesn’t reach their age appropriate milestones in gross or fine motor skills, social skills, thinking and/or reasoning skills. There are many different causes for developmental delays and some can be reversed if caught soon enough. Parents can access support for their child with a developmental delay in many places, such as their local school system or pediatrician. Developmental delays range in severity and often times improve with an individualized treatment plan.

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Down Syndrome (Trisomy 21)

Trisomy 21, better known as Down Syndrome, is an abnormality of the 21st chromosome, there are three copies rather than two. Those with down syndrome may be more likely to have issues with congenital heart disease, gastrointestinal abnormalities, endocrine disorders, epilepsy, musculoskeletal issues that can affect motor abilities, hearing loss, speech and language-, sleep- , and feeding disorders, learning disabilities, intellectual disabilities, and autism.

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Digestive Conditions

 



Anal Atresia/Imperforate Anus:

 


Anal Atresia is a birth defect that affects the anus of an infant. It refers to the condition where the anus is abnormally constricted, dilated, or when a fistula present empties the colon into the bladder. Most of these defects can be successfully treated with surgery, and children often make a full recovery.

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Cyclic Vomiting Syndrome:

 


Cyclic Vomiting Syndrome is characterized by episodes of severe vomiting. These episodes can last from an hour to a few days. Each episode last roughly around the same time length as episodes in the past. Common triggers of these episodes can be related to intense feelings of stress or anxiety, excitement, infections, or allergies. Generally symptoms improve once the triggers are discovered and when the child is able to better control their response to them. Medication is also available and has proven to reduce the intensity of the episodes.

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Ear and/or Hearing Conditions

 



Deaf or Hearing Impairment:

 


Deafness or hearing loss can be described as a complete or partial inability to hear. There are many different causes for this condition. Individuals who are deaf or hard of hearing are able to live normal and healthy lives. Children may require alternative educational programs, but their physical and intellectual development is not affected by this condition.

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Eye and/or Vision Conditions

Congenital Anophthalmia:
Congenital Anophthalmia is condition present at birth where the globe and ocular tissue are missing from the eye orbit. As the child grows and facial bones and orbits develop, an Ocularist can make prosthetic eyes. Prosthetics will not help the child see, but it will allow the child’s face to grow and develop.

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Congenital Cataracts:

 


Congenital Cataracts refers to lens opacity (cloudiness) which is present at birth. A cataract present at birth can cause the immature visual system to be deprived from stimulation that is needed for normal development. Some Congenital Cataracts are not severe enough to require surgery, while others are. If surgery is required lens implants are becoming more popular and successful.

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Exotropia/Esotropia:

 


Exotropia is a condition where your child’s eyes are misaligned and the eyes point outward. Esotropia is a similar condition, but the eyes point inward. Some common treatments are glasses, patching therapy, exercises, and sometimes surgery.

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Glaucoma:

 


Glaucoma causes damage to the eye’s optic nerve and progresses over time if not treated. A buildup of pressure called intraocular pressure in the eye is often the cause of this condition, and can result in vision loss. There is currently no cure for Glaucoma, but the condition can be managed and controlled with prescription eye drops or surgery.

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Heart Conditions

 



Atrial Septal Defect:

 


Atrial Septal Defect is a congenital heart condition that enables blood flow between both compartments of the heart. It occurs during fetal development and is present at birth. Depending on severity of the Atrial Septal Defect, treatment options vary. If the child is given treatment the outcome has high success rates.

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Coarctation of the Aorta:

 


Coarctation of the Aorta is a narrowing of the aorta which forces the heart to pump harder to push blood through the aorta, and often affects the body’s circulation. It is a congenital defect meaning the condition was present at birth. Symptoms of the condition vary, but surgery is often recommended by physicians and the outcome is generally very successful.

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Congenital Heart Defect (CHD):

 


A congenital heart defect means that a child is born with an abnormal y-structured heart which may have missing parts or vessels, holes in the chambers, or narrow valves. Not all children with congenital heart defects will require surgery, and some may just need to do regular check-ups with a doctor and be carefully observed.

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Heart Murmur:

 


A heart murmur is an abnormal sounding heartbeat. Most of the time this is normal and safe (an innocent heart murmur), but heart murmurs caused by congenital heart defects or heart valve problems (abnormal heart murmur) can have symptoms, depending on their cause.

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Patent Ductus Arteriosus:

 


Patent ductus arteriosus (PDA) is a heart condition where blood flow between the two major arteries connected to the heart is abnormal. Sometimes the PDA will shrink and go away, but in some cases a child may need treatment to close their PDAs. After treatment, most children will go on to live a healthy life.

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Tetralogy of Fallot:

 


Tetralogy of Fallot is a condition in which four defects are present at birth which affect the structure of the heart and the blood flow. It is a condition that is treated surgically. Generally the results after surgery are good, but regular visits to the doctor will be necessary. Your child may need medication, a heart catheterization, or additional surgeries.

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Transposition of the Great Vessels:

 


Transposition of the Great Vessels is a heart defect where the two major vessels that carry the blood away from the heart (aorta and pulmonary artery) are switched. It is a condition where there is a decreased amount of oxygen in the blood that is being pumped to the rest of the body. It is commonly treated with medication, a balloon atrial septostomy, or an arterial switch procedure. The symptoms should improve after treatment, and your child should go on to live a healthy and happy life.

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Ventricular Septal Defect:

 


A Ventricular Septal Defect is a congenital defect where there is an opening in the lower chamber of the heart allowing oxygen rich and oxygen poor blood to mix. If the opening is small it will often times close on its own. If the opening is larger, your child may need surgery to close the opening as soon as possible.

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Infectious Diseases

 



Hepatitis B:

 


Hepatitis B is an infection caused by a Hepititis virus. that can cause liver disease or inflammation of the liver which can result in the organs not work properly. A person can get Hepatitis B through contact with an infected person’s blood, or other bodily fluids. A blood test can determine if a person has the disease and it is not normally treated unless the disease becomes chronic. If treated, medications that will slow or stop the virus from causing damage to the liver are commonly used.

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Hepatitis C:

 


Hepatitis C is a virus that attacks the liver leading to inflammation. In most cases there are no symptoms that appear, and it is generally the most common type of Hepatitis. It is passed through contact with contaminated blood or bodily fluids usually through childbirth, sharing of needles, and sexual contact. There is no vaccine to prevent Hepatitis C, but treatment is available depending on the severity of the condition.

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Tuberculosis:

 


Tuberculosis is a contagious bacterial infection that mainly affects a person’s lungs. A small percentage of people exposed to the bacteria will have the active disease, and with medical attention Tuberculosis can be treated. If it is left untreated the infection can be fatal.

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Central Nervous System

 



Agenesis of the Corpus Callosum:

 


Agenesis of the Corpus Callosum is a birth defect developing in the early prenatal period where the structure that connects both hemispheres of the brain is partially or fully incomplete. The effects of this disorder range from mild to severe, and treatment generally involves management of symptoms.

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Support Group:

  • Agenesis Corpus Callosum Group
  • ACC Awareness

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Arachnoid Cyst:

 


Arachnoid Cysts are fluid filled sacs located between the brain or spinal cord and the arachnoid membrane. The location and size of the cyst determine the symptoms and treatments that may be needed. Most symptoms include nausea, headaches, seizures, vertigo, and difficulties with balance. In most cases symptoms resolve with treatment.

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Cerebral Palsy:

 


Cerebral Palsy is caused by an abnormality in brain development and in most cases the cause of Cerebral Palsy is unknown. It is a term that describes range of physical disabilities such as irregular body movement, posture, and balance that are the result of damage to the brain. It is thought to generally occur during a baby’s development in the womb, but in some cases it is cause by damage to the brain after birth. It is a non-progressive condition, meaning the brain damage won’t worsen overtime.

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Cortical Dysplasia

 


Cortical Dysplasia is a common cause of epilepsy, and occurs when the top portion of one’s brain hasn’t formed correctly. This condition causes seizures.
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