T = TOURETTE SYNDROME

April 29, 2015April 29, 2015 pattyalcala A to Z Challenge for April, Blogs, Children's Chronic illnesses, I AM NOT SICK BOY A to Z Challenge, Children, Chronic Illnesses, Drugs, Hospitals, I AM NOT SICK BOY, Illness,, Medical

Tourette Syndrome (TS) is considered a chronic condition that is first noticed in childhood and lasts a lifetime. The worst symptoms usually are in their early teens and continues through late teens into adulthood. It does seem to run in families, but the experts that ‘be’ do not agree on whether or not it is inherited. TS has been thought to stem from parts of the brain, especially the basal ganglia, where nerve cells and the chemicals carry messages to control body movements. Researchers continue to look for the cause of the problem.

Tourette Syndrome was first described by a French Neurologist, Dr, Georges Gilles de la Tourette in 1885. It is defined as a neurological disorder characterized by repetitive, involuntary movements and sounds called tics. A tic is something like a twitch or a hiccup that is not planned or wanted. To be diagnosed with Tourette Syndrome, a person must have at least two tics that affect body movement and one that is a sound. About 100,000 to 200,000 people in the United States have Tourette Syndrome. It occurs in all ethnic groups, and three to four times more males are affected than females.

The child may frequently have more than one tic at one time and they can continue for the entire day. The one time the child seems to get some relief is when he/she is relaxing (listening to music), or concentrating (working on the computer) It may not completely go away, but much less. But under stress (studying for a test) or excited (a party or sports game) the tics usually get worse. Over time the type of tic usually changes, and as the person is coming into adulthood, they become less frequent. It is rare for an extreme case of Tourette’s to continue into adulthood. Most children are on medications. It is not unusual for the child to have other disorders, such as ADHD, or OCD. It is important to identify and diagnose the condition and treat them appropriately.

There are two types of tics:

Motor Tics:

1. Arm or head jerking

2. Blinking

3. Making a Face

4. Mouth Twitching

5. Shoulder Shrugging

Vocal Tics

1. Barking and Yelping

2. Clearing your throat or grunting

3. Coughing or Sniffing

4. Shouting or swearing

5. Repeating what others say

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HOW IT FEELS TO BE A MOM OF A CHRONICALLY ILL CHILD

April 29, 2015 pattyalcala Blogs, Children's Chronic illnesses, I AM NOT SICK BOY Children, Chronic Illnesses, Hospitals, I AM NOT SICK BOY, Medical, Mom

#35 – It is shocking how true this is. In the beginning, you think and expect that you and your child will be treated with respect and compassion. But it is true that you will find the opposite. Some will be short with you, make you feel ‘stupid’, and you will be sent to an endless line of specialists with the same, or worse attitudes. With that being said, you are also in a unique position that other moms will never know. The many hours in the Emergency Room and hospital visits and the time necessary to be a special mom for your special child gives you a bond that is difficult to imagine. I remember the last night that my son was here on this earth. We had just come home from the ER, then to Denny’s (as was our custom) and he hugged me tight and told me that he appreciated all of the time we had together, that even as he was an adult I was there with him, and especially that I always allowed him to be the person that he wanted to be. We said good night. I found him the next morning cold and blue in his tiltabed (his name for his adjustable bed) , one of the hardest, most devastating days of my life. But, I knew he was ready. I would never be. I would always Love Love Love that I was chosen to be his MOM.

I am reblogging this from The Mighty:

http://themighty.com/2015/04/35-secrets-of-being-a-special-needs-parent/

S = SPINA BIFIDA

April 27, 2015April 29, 2015 pattyalcala Blogs, Children's Chronic illnesses, I AM NOT SICK BOY A to Z Challenge, Children, Chronic Illnesses, Hospitals, I AM NOT SICK BOY, Medical, pain

Spina Bifida is a type of birth defect that affects the brain and the spinal cord. It happens when the spine and the vertebrae are being formed, and it does not close completely. This happens at about the time that the fetus is one month old. It can damage the nerves and the spinal cord. At the first ultra sound that is done, it may be picked up, but there is a possibility that it will not be found until the baby is born. The current data shows that there are approximately eight babies a day born with spina bifida or a similar defect of the brain and spine. It is considered the most common permanently disabling birth defect in the United States.

The exact cause of spina bifida is unknown, but it does seem to run in families. Doctors prescribe folic acid before and during pregnancy to reduce the risk of the baby being born with the defect. The effects are varied. Most have normal intelligence. Some require assistive devices: Braces, crutches, or wheelchairs. There is a risk of learning difficulties, urinary and bowel problems, or hydrocephalus (a buildup of fluid in the brain.)

There are three types of spina bifida with different stages of severity.

1. Spina Bifida Occulta: Is the mildest and most common form with a small gap in the spine without an opening or a sac on the back. The spinal cord and nerves remain undamaged. It may not be found unless there is another reason for the child or adult to have an X-Ray. There are usually no symptoms or disabilities.

2. Meningocele: Is a sac of fluid that comes through an opening in the baby’s back. The spinal cord is not in the sac and there is usually little or no damage. Those with this type of spina bifida may have minor disabilities. It is usually not necessary for surgery with this type.

3. Myelomeningocele: This type is what most people are talking about when they refer to spina bifida. It is the most severe type with a sac of fluid coming through an opening in the baby’s back with part of the spinal cord and nerves that causes damage. A surgery will take place within one to three days after birth to reduce the risk of infection or other disabilities. Sometimes this surgery may be done before the birth. 70 to 90% of these children have too much fluid on their brains and causes pressure and swelling. This may cause brain damage. Their disabilities are from moderate to severe. This child will require lifelong treatment and assistance with specialty care.

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