CLSF News |
Vol 16 Issue 3, October 2007 |
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"Worries are an illusion. They make you live in the
future, giving you the belief that you are very busy and takes you away from the
present. Worries are an excuse for not doing what you really have to be doing. A
reactive person appears very busy and worried. With worry, no problems can be
resolved. A proactive person focuses attention on the present, acts with
initiative, and the understanding that being calm and free from worry is far
more effective."
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The Supreme Court ruled recently that parents of disabled children do not have to hire lawyers to sue school districts when they attempt to ensure that their children’s special needs are adequately met. The court found that the federal Individuals With disabilities Education Act (IDEA), which guarantees children a “Free appropriate public education,” gives rights to parents as well. Parents may represent themselves in federal court when disputes arise between them and a school district over what is best for the child, the court held.
The decision could allow more parents unhappy with education plans drawn up for their children by school districts to sue for changes. "I believe there will be many more IDEA cases brought in federal court," said Kathy Mehfoud, a Richmond lawyer who represents about 80 school districts across Virginia. Some parents of disabled children contend that it is expensive and often difficult to find lawyers who will take such cases. That was the experience of Jeff and Sandee Winkelman, who sued the Parma, Ohio, school district on behalf of their autistic son, Jacob. The Winkelmans said they could not afford an attorney to continue their dispute with the school board over its decision that Jacob's needs could be met in a public school. Federal courts generally allow individuals to represent themselves -- but not others -- without the aid of a lawyer. The U.S. Court of Appeals for the 6th Circuit dismissed the Winkelmans' appeal on behalf of Jacob unless they obtained counsel to represent their son. That was the decision reversed by the Supreme Court yesterday. The majority said a comprehensive reading of the act makes it clear that parents have rights at each stage of the process and thus may represent themselves in federal court. "The parents enjoy enforceable rights at the administrative stage, and it would be inconsistent with the statutory scheme to bar them from continuing to assert these rights in federal court," Kennedy wrote. Scalia, who concurred in part with the judgment and dissented in part, said his colleagues' decision "sweeps far more broadly than the text [of the act] allows."
The case is Winkelman v. Parma City School District.
Lee Horspool was introduced to CLSF by his sister, Wendy. Wendy’s sister, Kim and Kim’s daughter, Alice, also have CLS.
In Wendy’s words. “Lee can’t manage any personal needs by himself, he communicates very little”. He can say “tea”, “bus”, “car”, and tells his family that he wants McDonald’s by smacking his lips together. He enjoys traveling in the car, picnics and going to the pool or beach. He doesn’t like to be told he can’t go out today. Lee has scoliosis, drop episodes, reflux and sleep apnea. According to Wendy, “he has a very cheerful personality—he wakes with a smile and goes to bed with a smile.”
Recently, Lee had a fall and can no longer use his hands properly. He was x-rayed but no broken bones were found. Wendy has been very frustrated because she has been unable to find anyone who is familiar with CLS and knows how to treat her brother. They say they don’t know what to do if he can’t tell them where it hurts.
Wendy Horspool, AUSTRALIA
Well after having a sleep study done (my idea) it was determined that Tom does have Extreme Obstructive Sleep Apnea*. I just thought he snored. During the study he actually had 157 occurrences (he stopped breathing that many times). Needless to say he was kept in the hospital for observation and examination of the ENT specialist. His tonsils were small and not a problem, he did have some extra tissue flapping around back there along with his large tongue probably relaxing in the back of his throat was easily diagnosed as the problem. They chose not to inconvenience him with a tube/scope down the throat to examine the adenoids. He was fitted with a bi-pap mask and did another sleep study to find that would be sufficient for now.
So we are dealing with that now. What do you do if he gets a cold? Does he still wear it? Of course it's just one more thing that Tom hate's but he wears it anyway. (Helps that he has uncles that wear one also, so he doesn't feel odd).
So far he's been wearing it almost a month and only turned it off during the night maybe 4-5 times. I'm planning to get a baby monitor now that he doesn't snore anymore to listen in.
Dianna & Donald Garvin, Indiana, USA
CLS kids are at higher than average risk for sleep apnea due to their "architecture" - the smaller lower jaw, smaller airway, hypotonia, and often enlarged tonsils. If your child snores, get a sleep study done. The chronic oxygen deprivation can damage the brain and other vital organs. The Bi-Pap machine is a nuisance, but it works, and the kids learn to adapt to it.
I found some anecdotal information about Bi-Paps and head colds, and people say that the Bi-Pap actually helps them breath better when they have a cold. Some of them crank up the pressure a bit during a head cold. One person said that they leave an open jar of Vicks Vap-O-Rub near the Bi-pap air intake.
Bi-Pap tips:I found some things that work after much trial and error. The soft caps stay on better than the strap models. Get the quick-release clasps - they are worth it. I sewed a loop of elastic to the top of the soft cap and threaded the tubing through that, through the headboard and then to the machine. This keeps the tubing out of their way when they roll over and helps keep the mask on. It is important to keep the tubing, caps, and water well clean according to the directions - buy an extra set so you have one to use, one to wash.
-MCH
*sleep apnea usually obstructive sleep apnea, caused by small jaw, large tongue, enlarged tonsils, etc., characterized by snoring, daytime
sleepiness
David is very small for his age (less the 100 lbs) He is happy, pleasant, and usually
peaceful. He dresses himself and uses the toilet himself. He can make himself a
bowl of cereal which he loves to eat.
He needs supervision while bathing or pretty much any other task because of startle attacks. We never know when they will strike, and he gets injured frequently. David broke a C4 vertebrae due to a fall. He was in a neck brace for about 6 weeks. He gets injured more now that he's gotten older, and we're noticing that it's not always sound that startles him. He sometimes even does it in his sleep. He did wear a protective helmet, but it wasn't effective, since most of his injuries were eyebrow lacerations, or broken nose.
He has had several falls out of his bed and now he's afraid to sleep in the bed. Last night out of desperation, we blew up an air mattress and put it on the floor. It worked in that he slept through the night, but he's still fearful. He broke his nose twice in two weeks and ended up having to have surgery on it, so I guess that would make me fearful, too. We have a small wheelchair that we use for trips outside the home. We recently bought a fielder's mask (used for softball) to help protect his face, and we have tried Recspecs instead of regular glasses because his glasses would cut him so badly whenever he fell on them. It has been hard to get him used to wearing these though. It's a battle right now. On the positive side, David is communicating better than ever. He enjoys the computer and has discovered Myspace. He needs help reading and typing, but with Myspace, he can just click on pictures of his friends and go to their profiles to see their pictures and hear their favorite songs.
He talks in short sentences and enjoys a good joke. David is active in our church youth group and the kids in the group have all grown attached to him. They are great about including him and treating him like a "normal" teen.
David also likes funny movies, his favorite being "Napoleon Dynamite" which he quotes lines from frequently.
I would never have imagined that my child would be famous, yet whenever I take him somewhere, people I don't know or remember will come up and say, "Hi David". They will remember him from a one time meeting long ago. It amazes me the influence he has had on others in his short lifetime just by being his friendly, sweet self.
Sam and Mary Painter, Georgia, USA
Deann Yerk is the mother of 3 boys with CLS: Dominic Miller, Age 6, Marcus Miller, Age 8, and Joseph Moss, Age 3.
Deann’s most pressing problems are dealing with Dominic’s behavior which include hitting, biting, throwing things, and head butting. She would appreciate any and all advice.
Deann Yerk, Colorado, USA
Ronald & Carolyn Kupcinski, Pennsylvania, USA
The Knegt family are new to CLSF. They have a 13-year old boy. I’m still gathering information from the family about their son, which is interesting since we don’t speak each other’s language!
The Knegt Family, NETHERLANDS
“Trust yourself. You know more than you think you do.”
~ Benjamin Spock
Source: http://www.mayoclinic.com/health/difficulty-swallowing/DS00523
You might take swallowing for granted — you take a bite of food, chew and swallow. Most people don't think much more about it. But for some people, difficulty swallowing makes every meal a challenge.
Occasional difficulty swallowing (dysphagia) usually isn't cause for concern, and may simply occur when you eat too fast or don't chew your food well enough. But persistent difficulty swallowing may indicate a serious medical condition requiring treatment.
Difficulty swallowing may mean it take more time and effort to move food or liquid from your mouth to your stomach. Difficulty swallowing also may be associated with pain. In some cases, you may not be able to swallow at all.
Difficulty swallowing can occur at any age, but is most common in older adults. The causes of swallowing difficulties vary, and treatments depend upon the cause. In many cases, the condition can be partially or completely corrected.
Signs and symptoms sometimes associated with dysphagia may include:
 | Pain while swallowing (odynophagia) |
| Not being able to swallow at all |
| Choking or coughing while eating |
| Sensation of food getting stuck in your throat or chest, or behind your breastbone (sternum) |
| Pressure or pain in your chest |
| Bringing food back up(regurgitation) |
| Frequent heartburn |
| Food or stomach acid backing up into your throat |
| Gurgling sound in your throat |
| Unexpected weight loss |
In infants and children, signs and symptoms of swallowing difficulties may include:
| Lack of attention during feeding or meals |
| Tensing of the body during feeding |
| Refusing to eat foods of different textures |
| Lengthy feeding or eating times (30 minutes or longer) |
| Food or liquid leaking from the mouth |
| Coughing or gagging during feeding or meals |
| Spitting up or vomiting during feeding or meals |
| Inability to coordinate breathing with eating and drinking |
| Poor weight gain or growth |
When you swallow, your tongue pushes food to the back of your throat. Muscle contractions quickly move food through your pharynx, the area that extends from the back of your throat to the top of your esophagus. Next, the food moves past your windpipe (trachea) and into your esophagus, the tube that connects your throat to your stomach.
Circular bands of muscles (sphincters) at the top and bottom of your esophagus open every time you swallow to let food pass, then quickly close. The lower sphincter allows food to enter your stomach and keeps stomach acid from coming up into your esophagus. Muscles in the wall of your esophagus help push food toward your stomach in a coordinated process (peristalsis).
Dysphagia occurs when there's a problem with any part of the swallowing
process.
A number of conditions can interfere with swallowing, and they generally fall
into one of several main categories.
This is the most common type of swallowing difficulties. It refers to the sensation of food sticking or getting hung up in the base of your throat or chest. Common causes of esophageal dysphagia include:
| Achalasia. This occurs when your lower esophageal muscle (sphincter) doesn't relax properly to let food enter your stomach. Muscles in the wall of your esophagus are often weak as well. This can cause regurgitation of food not yet mixed with stomach contents, sometimes causing you to bring food back up into your throat. |
| Aging. With age, your esophagus tends to lose some of the muscle strength and coordination needed to push food into your stomach. |
| Diffuse spasm. This condition produces multiple, high-pressure, poorly
coordinated contractions of your esophagus usually after you swallow. Diffuse
spasm is a rare disorder that affects the smooth (involuntary) muscles in the
walls of your lower esophagus. The contractions often occur intermittently,
becoming more severe over a period of years. Esophageal stricture. Narrowing of your esophagus (stricture) causes large chunks of food to get caught. Narrowing may result from the formation of scar tissue, often caused by gastroesophageal reflux disease (GERD), or from tumors. |
| Esophageal tumors. Difficulty swallowing tends to get progressively worse over several months when esophageal tumors are present. |
| Foreign bodies. Sometimes, food, such as a large piece of meat, or another object can become lodged in your throat or esophagus. Older adults with dentures and people who have difficulty chewing their food properly are at risk of obstruction of the throat or esophagus. Children are prone to swallowing pins, coins, pieces of toys, or other small objects that can become stuck. If an obstruction causes an inability to swallow or interferes with breathing, call for emergency help or go to the nearest emergency department immediately. |
| Gastroesophageal reflux disease (GERD). Damage to esophageal tissues from stomach acid backing up (refluxing) into your esophagus can lead to spasm or scarring and narrowing of your lower esophagus, making swallowing difficult. Long-term GERD can sometimes lead to Barrett's esophagus, a condition in which the color and composition of the cells lining your lower esophagus change because of repeated exposure to stomach acid. Having Barrett's esophagus increases your risk of esophageal cancer. |
| Pharyngeal diverticula. A small pouch forms and collects food particles in your
throat, often just above your esophagus, leading to difficulty swallowing,
gurgling sounds, bad breath and repeated throat clearing or coughing. This
disorder is more common as you age. Scleroderma. This disease is characterized by an overgrowth of scar-like tissue, causing stiffening and hardening of tissues. It can weaken your lower esophageal sphincter, allowing acid to reflux into your esophagus and causing symptoms and complications similar to those of GERD. |
Certain neuromuscular problems can weaken your throat muscles, making it difficult to move food from your mouth into your throat and esophagus (pharyngeal paralysis). You may choke or cough when you attempt to swallow, or have the sensation of food or fluids going down your windpipe (trachea) or up your nose. This may lead to pneumonia. Causes of oropharyngeal dysphagia include:
| Neurological disorders. Certain disorders, such as post-polio syndrome, multiple sclerosis, muscular dystrophy and Parkinson's disease, may first be noticed because of oropharyngeal dysphagia. |
| Neurological damage. Sudden neurological damage, such as from a stroke or brain or spinal cord injury, can cause difficulty swallowing or an inability to swallow. |
Common causes of swallowing difficulties in infants and children include:
| Developmental problems due to premature birth or low birth weight |
| Nervous system disorders, such as cerebral palsy or meningitis |
| Cleft lip or palate |
Some people experience dysphagia that has no anatomical cause. Unexplained swallowing difficulties include:
| Difficulty taking oral medications. Some people can't seem to swallow pills or tablets, even though they have no other difficulty swallowing. |
| Lump in your throat (globus). Some people feel the sensation of a foreign body or lump in their throats when, in reality, no foreign body or lump exists. Stress or excitement may worsen this sensation. Oftentimes, resolving the stress alleviates the problem. Actual difficulty swallowing usually isn't present. |
If you suspect that your child has trouble swallowing, contact your child's doctor. He or she may refer you and your child to a doctor who specializes in treating children with feeding and swallowing disorders (speech pathologist).
Your doctor may use a variety of tests to determine the cause of swallowing difficulties. These may include:
| Barium X-ray For this test, you drink a barium solution. The barium coats the inside of your esophagus, allowing it to show up better on X-rays. Your doctor can then see changes in the shape of your esophagus and can assess the muscular activity. Your doctor may also have you swallow solid food or a pill coated with barium to watch the muscles in your throat as you swallow or to look for subtle blockages in your esophagus that the liquid barium solution may not identify. |
| Endoscopy A thin, flexible, lighted instrument (endoscope) is passed down your throat so that your doctor can view your esophagus. |
| Esophageal muscle test In this test, called manometry (muh-NOM-uh-tre), a small tube is inserted into your esophagus and connected to a pressure recorder. This allows measurement of the muscle contractions of your esophagus as you swallow. |
Dysphagia can make it difficult for you to take in enough food and fluids to stay adequately nourished. People with difficulty swallowing are at risk of malnutrition and dehydration. If food or liquid enters your airway (aspiration) as you attempt to swallow, respiratory problems or infections can occur, such as frequent bouts of pneumonia or upper respiratory infections.
Treatment for swallowing difficulties is often tailored to the particular type or cause of your swallowing disorder:
| Oropharyngeal dysphagia For oropharyngeal dysphagia, your doctor will most likely refer you to a throat specialist or neurologist for further diagnostic testing and to a speech or swallowing specialist for therapy. Certain exercises may help coordinate your swallowing muscles or restimulate the nerves that trigger the swallowing reflex. You may also learn simple ways to place food in your mouth or to position your body and head to help you swallow successfully. |
| Esophageal dysphagia For a tight esophageal sphincter (achalasia) or an esophageal stricture, your doctor may use an endoscope with a special balloon attached to gently stretch and expand the width of your esophagus (dilatation). For an esophageal tumor or pharyngeal diverticula, you may need surgery to clear your esophageal path. Difficulty swallowing associated with GERD can be treated with prescription oral medications to reduce stomach acid after a stricture is dilated. You may need to take these medications for an extended period of time. If you have esophageal spasm but your esophagus appears normal and without GERD, you may be treated with medications to relax your esophagus and reduce discomfort. |
| Severe dysphagia If difficulty swallowing prevents you from eating and drinking
enough to maintain a healthy weight and avoid dehydration, your doctor may
recommend special liquid diets. In severe cases of dysphagia, you may need a
feeding tube to bypass the part of your swallowing mechanism that isn't working
normally. |
BiPAP stands for Bi-level Positive Airway Pressure. It is a breathing apparatus that helps people get more air into their lungs. It was developed in the 1990s as a development from the C-PAP, which stands for Continuous Positive Airway Pressure. In the 1980s, people used a C-PAP in their homes to help combat breathing difficulties such as sleep apnea.
Sleep apnea is a problem in which the person's upper airway collapses. This causes the person to repeatedly stop breathing. Apnea sufferers usually wake suddenly with a huge rousing snore. Their quality of sleep is poor and can lead to mental problems such as depression and lack of concentration. The physical health of the sufferer can also deteriorate.
The extra pressure from C-PAP allowed users to sleep by keeping the airways open. The problem with C-PAP was that the person had to exhale against the extra pressure. This made it unsuitable for people suffering from neuromuscular diseases.
Ever look around you and say, “Why me?” Ever feel that you got dealt a bad hand?
Someone will always be prettier. Someone will always be smarter. Someone’s house will be bigger. They will drive a better car. Their children will do better in school. If you continually compare yourself to people whom you believe to be more fortunate than yourself, you may feel cheated by life.
However, if you compare yourself primarily to people who are less fortunate than yourself, you will feel fortunate. For example, a breast cancer patient may have had a lumpectomy, but sees themselves as better off than another patient who lost their breast. Now that Thanksgiving is coming near, this is the time to remind ourselves how fortunate we really are.
The prettiest woman in the world can have hell in her heart. The most highly favored woman on your job may go home to an abusive relationship. The richest woman you know -- she's got the car, the house, the clothes -- might be lonely.
So let it go, and love you and your circumstances. Focus on something positive or beautiful right here and now and breathe it in. Let yourself fully feel it.
“When angry, count four; when very angry, swear.”
– Mark Twain, “Pudd’nhead Wilson’s Calendar”
Thanks for Caring!
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The following families or individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:
Send your donations to:
Coffin-Lowry Syndrome Foundation
c/o Mary Hoffman
3045 255th Ave SE
Sammamish, WA 98075
(U.S. Funds, please)
Donations made after August 9th, 2006 are tax deductible. EIN 20-3377465
http://www.NetworkForGood.org is a clearing house for charities to have online giving via credit cards or PayPal. They have a charity organization database populated by the federal income tax forms. The NetworkForGood report on CLSF is at: https://www.networkforgood.org/donate/MakeDonation2.aspx?ORGID2=203377465
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