Central Nervous System


Cerebral Palsy

Visit these blogs to read about families who have adopted a child with Cerebral Palsy:

The Little Girl in Pink
Adoption Adventure with Two Little Princesses … AND Princes Two!
The Hameloth Family Journey
Orphaned No More

image

Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain’s ability to adequately control movement and posture.

“Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function.

image

Resources:
American Academy for Cerebral Palsy and Developmental Medicine: Although the primary purpose serves to educate the health care professionals and providers who treat and care for those with cerebral palsy and developmental challenges, it also gives the latest information and resources to families and parents.
United Cerebral Palsy: Connects families with information and resources both on the web and in their state.
CP Hope Through Research
CDC Cerebral Palsy
Adopting a Child with CP (video)
CP Daily Living: A website with a rich source of information about day to day care of a child with CP. It covers insurance information and resources, state by state resources, book reviews, therapy, assisted living equipment, general information, FAQ and more.
International Alliance for Pediatric Stroke
Canine Companions for Independence
Children’s Hospital of St. Louis
Cerebral Palsy Source
Cerebral Palsy International Research Foundation
My Child without Limits: A nonprofit organization that’s mission is to provide education and resources to families facing the day to day challenges. It includes a wealth of resources, glossary of terms often associated with specific health challenges, medications, procedures and more.
My Child at CerebralPalsy.org
Humanitarian Foundation (dental care for children w/CP and other neuromuscular disorders)
Friendship Circle
March of Dimes
Types of Cerebral Palsy
Reaching For The Stars

Books:
Cerebral Palsy: A Complete Guide for Caregiving, by Freeman Miller & Steven Bachrach
Teaching Motor Skills to Children With Cerebral Palsy And Similar Movement Disorders: A Guide for Parents And Professionals Paperback – July 19, 2006
Too Loud, Too Bright, Too Fast, Too Tight by Sharon Heller, Ph. D
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with SensoryProcessing Issues by Lindsey Biel and Nancy Peske (Aug 25, 2009)
The Out-of-Sync Child by Carol Kranowitz and Lucy Jane Miller Ph.D OTR (Apr 4, 2006)

Programs in the US available to Families with Special Needs:
Early Intervention: You will find a great description of Early Intervention, the government funded program that provides in home therapy services for children 0-3 with special needs. It will give you direction to your state’s specific program and how to get the services your child can benefit from.

Facebook Groups:
Cerebral Palsy Parents Information
Cerebral Palsy Adoption
Selective Dorsal Rhizotomy – St. Louis Children’s Hospital
PVL Periventricular Leukomalacia
Parenting our adopted children with CP
Cerebral Palsy Support Group

Yahoo Groups:
Cerebral Palsy Club
Adopting Children with Cerebral Palsy
Cerebral Palsy Moms

 

Read blog posts about Cerebral Palsy on No Hands But Ours.


Epilepsy

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

Cheese Curds and Chinese Dumplings
Five Chili Peppers…plus two!
Beyond the Horizon
His Grand Design

000_5837

Epilepsy is a condition of the brain that causes seizures. There may be a physical/structural reason in the brain causing the seizures, from a brain injury, or the seizures may be genetic, or most often, the cause is unknown, also known as idiopathic. A person is considered to have epilepsy when they have two or more unprovoked seizures that are separated by 24 hours or more.

Anyone can be affected by seizures, at any age. In fact, 1 in 26 people in the United States will develop epilepsy at some point during their lifetime. There are many different types of seizures, and not all are obvious. To get an accurate diagnosis, obtaining a detailed medical history and blood testing are needed. In addition, EEG testing, MRI, and CT scans may be ordered. These will give the most accurate idea of the electrical activity in the brain, as well as looking for any structural abnormalities. Knowing what is causing the seizures, and where they are originating from is helpful in properly treating them.

There are many different types of seizures, and also many different epileptic syndromes. Some seizures will include a lack of consciousness, and some will not. Some last for only seconds, and some can go on and on and must be stopped medically (status epilepticus). Some of the most common types of seizures include:

Tonic Clonic: Also known as Grand Mal. The tonic clonic seizure is what most people think of when they think of a convulsive seizure. A person loses consciousness, muscles stiffen, and jerking movements are seen. These types of seizures usually last 1 to 3 minutes and take much longer for a person to recover. A tonic clonic seizure lasting more than 5 minutes is considered a medical emergency.

Absence: Also known as Petit Mal. Absence seizures are lapses of awareness, sometimes with staring. They begin and end abruptly, lasting only a few seconds. More common in children. Absence seizures can be so brief that they sometimes are not detected for months.

Complex Partial: Complex partial seizures last 1 to 2 minutes. These seizures may have an aura (or warning). Complex Partial Seizures include automatisms (such as lip smacking, picking at clothes, fumbling), unaware of surroundings or may wander. Many treatment options are available including medicines, diet, surgery and devices.

Febrile: Children aged 3 months to 6 years may have tonic-clonic seizures when they have a high fever. They are more likely to occur if there is a family history of febrile seizures. Most children do not require daily treatment with medication. Among children who have their first febrile seizure before their first birthday, half will have at least one more. Long-term outlook is excellent.

After a seizure, a person enters an altered state of consciousness known as the Post-Ictal state. It usually lasts between 5-30 minutes, but can last much longer, and is characterized by drowsiness, confusion, exhaustion, nausea, hypertension, headache/migraine, and other disorienting symptoms. Seizures are often controlled by anti-seizure medications or a combination of them. When medications do not work, there are other options to try, such as surgery (for certain types of seizures), dietary therapies, and some complementary or alternative treatments, for example.

Resources:
Rainbow Kids
Yahoo – Epilepsy Kids Group
Epilepsy Foundation

 

Read blog posts about Epilepsy on No Hands But Ours.


Hydrocephalus

Visit these links to read about families who have adopted a child with hydrocephalus:

Until We See Him Face to Face
The Sweet Family Life
A Homespun Heritage
Living with Hydrocephalus
The Story of Hannah
Everything Beautiful

10644882_10204729772515027_7250339626403406033_n

Hydrocephalus is the buildup of fluid in the brain’s ventricles. Once known as “water on the brain,” the “water” is actually excess cerebrospinal fluid (CSF). Your brain normally floats in a bath of CSF. The CSF is supposed to fill the ventricles which lie deep within the brain and help to keep it buoyant and cushioned. In children with hydrocephalus, however, the CSF pools in one of more ventricles in the brain. This excess CSF can occur for one of many reasons including obstruction, poor absorption, or even overproduction. Obstruction from one ventricle to another is the most common, according to the Mayo Clinic. As the amount of pent up CSF increases, the size of the brain’s ventricles increases as well, putting tremendous pressure on the brain.

Symptoms of hydrocephalus can include abnormal enlargement of a child’s head, headaches, blurred or double vision, sleepiness, nausea or vomiting, poor coordination, poor appetite, seizures, irritability, attention problems, and delays in reaching childhood milestones.

While hydrocephalus can occur at any age, it’s more common among infants and older adults. In many orphanage situations, some children are shunted or receive surgery for their hydrocephalus, while some do not receive any treatment.

Surgical treatment for hydrocephalus can restore and maintain normal cerebrospinal fluid levels in the brain. In fact, a variety of interventions are available for children with hydrocephalus including placement of a shunt and/or the third ventriculostomy surgery in which tiny holes are surgically placed in the third ventricle to allow pent up fluid to naturally absorb into the brain.

Children with unrepaired hydrocephalus are in need of immediate adoption and medical care. In most instances, the U.S. and Chinese governments and agencies will work together to help expedite the child’s adoption.

When considering a child with a hydrocephalus diagnosis as well as when considering a medical expedite, some questions to ask of the orphanage include, is the child currently vomiting, having seizures, pulling out their hair, crying uncontrollably, always sleepy, or do they have their eyes fixed downward. All of these symptoms – or many symptoms together – could mean that the child’s hydrocephalus is worsening and that medical intervention is needed immediately. Some children may exhibit one or many of the above symptoms, while other children with hydrocephalus may only exhibit the enlarged head and headaches. These obviously vary on a person-to-person basis.

While hydrocephalus may seem like a scary diagnosis, children with a hydrocephalus diagnosis can live to be happy, healthy, and thrive with a family that is willing to offer the needed medical care that is required for a shunt or ventriculostomy.

Resources:
Hydrocephalus Association
National Hydrocephalus Foundation
Yahoo! Group – Hydrocephalus Parents
NIH Hydrocephalus Fact Sheet
Rainbow Kids

 

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


Microcephaly

Visit these links to read about families who have adopted a child with this special need:
Beyond the Horizon
Perfect for Us

10695260_10204830240340664_954608156_n

Plotting head growth is the standard of care in all offices that provide medical care for infants and children. While there are numerous medical factors that can adversely affect a child’s head size, living in an institution itself can cause of global growth delay. It is a well known fact that children that live in orphanages tend to have a syndrome called Institutional growth delay. For every three months that a child lives in an orphanage, one could expect approximately 1 month of delay in both growth parameters (height, weight, and head circumference) as well as developmental delays in milestones.

Unfortunately, a small head can not be dismissed just because the child lived in an orphanage or that the measurements were wrong. It is imperative to analyze the entire medical record for any medical risk factors, view the video tape to look for any significant delays in development. It is also important to view pictures of the child in order to determine if there is any concern for genetic syndromes, birth defects or fetal alcohol syndrome. It is only after this that an limited educated determination can be assessed.

The growth charts that are used in the USA today are developed from data merged from two studies performed in 1948 and 1965. In the data collection children measured were well nourished and ethnically diverse. Unfortunately, neither or the two studies incorporates data from any country in the world that places children for International adoption today. One should not dismiss growth parameters because they do not pertain to these children. They do provide an arsenal of information. They must however be used with the understanding that there are some short comings to the data. If a growth chart is available for the child’s country of origin it should be used in order to determine the individuals head size in relation to its peers. It is also very important to realize that growth parameters over time are much more informative than individual points.

Microcephaly: is defined as a head circumference of less than 2 standard deviations below the mean for age and sex. Growth parameter over a prolonged period of time is more important that single measurements. Head circumferences that progressively drop to lower percentiles with the increasing age are indicative of a medical condition or process that has impaired the brain development. A very small head size at birth is a red flag that there was some type of intrauterine insult (Source).

Resources:
Evaluating Growth in Adoptees
Small Head Size Problem

 

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


Moyamoya

Visit these blogs to read about families with children with Moyamoya:

Thank God They are Mine
Gillian Marchenko


mm

 


What is Moyamoya?

Moyamoya disease is a rare, progressive, cerebrovascular disease caused by occluded, or blocked, arteries in the brain. When the affected arteries begin to die and close off at the base of the brain due to the disease, the brain tries to compensate for this lack of blood flow and oxygen by growing a new set of tiny, fragile blood vessels to bypass the blockages.

First named in Japan in the 1960s, the Japanese term “moyamoya” means “puff of smoke”, describing what is seen on MRI images in affected individuals: the wispy tangle of tiny vessels formed to bypass the blockage.

Is there anyone more likely to have Moyamoya?

The disease has been seen in many ethnicities, and can be diagnosed at any age.

Moyamoya sometimes occurs along with other disorders such as Down Syndrome, brain AVMs, neurofibromatosis, sickle cell disease and prior radiation for brain tumors. About 8-10% of Moyamoya patients have a relative also affected with the disease, so there may be some genetic component.

What are the symptoms of Moyamoya?

In many cases, one of the first symptoms of Moyamoya is frequent migraines or headaches that have no other explanation. Another telltale symptom is transient ischemic attacks (TIAs, commonly referred to as “mini-strokes”), which cause a temporary loss of neurological function or paralysis. As the disease progresses and blood flow is further restricted to the brain, full-fledged strokes can occur.

Individuals with this disorder may also present with speech deficits (usually aphasia), progressive learning or cognitive impairments, seizures, and vision problems. Children can experience temporary weakness in one or more limbs during strenuous activity or after long bouts of crying. Adults can present with brain hemorrhage or aneurysm Females are affected more than males.


mm5

 


How is Moyamoya treated?

Diagnosis can be made with an MRI/MRA of the brain. It is not considered curable; there are no drugs to cure Moyamoya. However, it is treatable, but the only proven treatment is surgical, called revascularization. Because the disease is progressive, this is the only option. A neurosurgeon must perform brain surgery to introduce new, healthy arteries to the brain to bring in adequate blood flow where it has been missing due to the closed off Moyamoya vessels.

Due to the complexity of the disease, expert care is critical. Stanford Medical Center and Boston Children’s Hospital have the largest case experience in the world for this disease.

What is the outlook for those with Moyamoya?

If treated properly and in a timely manner, the outlook for patients with Moyamoya is excellent. Once healthy blood flow has been restored to the brain, a prescription for daily aspirin and extra fluids to maintain easy blood flow is typical. Other than that, patients are usually able to lead full, active lives with very few other lifestyle restrictions.


Resources:
Moyamoya.com
Boston’s Children’s Hospital: Moyamoya Disease
Vanderbilt University: Moyamoya Epidimiology, Presentation, and Diagnosis

Read more blog posts about Moyamoya on No Hands But Ours.


Spina Bifida

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

Living in a Rainbow World
First a Diamond, Then Three Rubies
The Kelley Family
The Miracle of Four
A Homespun Heritage
Rare and Beautiful Treasures
Our Himpossible Journey
Blessed Beyond Belief
Hockey and Hairbows
Hope 4 the Wounded

10410936_10203852346402798_4845352512079950288_n

Spina bifida is a neural tube defect that is caused by a failure of the infant’s spine to completely close during the first month of pregnancy. Spina bifida can range greatly in severity. Often children with spina bifida suffer from varying degrees of paralysis in their lower limbs (from toes with limited sensation to complete lower body paralysis) as well as complications with bowel and bladder control. Sometimes children will also have learning disabilities and/or hydrocephalus (accumulation of cerebrospinal fluid in the brain).

The types of spina bifida are:

myelomeningocele – the most severe form, in which the spinal cord and protective coverings come out through an opening in the spine

meningocele – the actual spinal cord develops normally, but the meninges and spinal fluid stick out through an opening in the spine

closed defects – development of the spinal cord is affected by the fat, bone, or meninges; and the mildest form being spina bifida occulta in which the vertebrae are malformed

10588954_771978909511816_285656918_n

There is no cure for spina bifida, but there are many surgeries, therapies, braces, and procedures that can help these kids immensely! Ongoing therapy and visits to specialists are a must; and it is a plus to live close to a major children’s medical center that has a spina bifida clinic. The spina bifida clinic can coordinate all your specialist visits as well as provide many resources for things such as camps and other fun activities. It is also beneficial to visit a physiatrist who can establish a base line for your child, recommend and administer treatment, including necessary injections, write scripts for orthotic devices and make referrals to neurosurgery, urology and physical therapy as needed.

Another thing that is important to remember is that many (if not most) of the files that you will receive will not have the correct and/or thorough diagnosis in regards to the type or the severity of spina bifida the child might have. Adoption is always a leap of faith, but spina bifida is not life threatening.

10600979_10152671105270972_904891854_n

Resources:
Right Under My Nose
NIH Spina Bifida Fact Sheet
Spina Bifida Association
Adopting a Child with Spina Bifida
Kids Health – SB
Yahoo! Group – China Adoption SB
Adopting a Child with Spina Bifida (video)
Shriners Hospitals

Read blog posts about Spina Bifida on No Hands But Ours.


© 2017 No Hands But Ours

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.