"To be a star you must shine your own light, follow your own path and don't worry about the darkness, for that is when the stars shine the brightest."
- Rosemary Griffin

One bright sunny day, Pierre and Alfie were at recess playing their absolute favorite game, space adventure. Alfie loved anything to do with outer space and often convinced Pierre to be his co-pilot for missions. No matter how treacherous the mission was, Pierre and Alfie always returned to earth safely just in time for lunch.
However, there was something about Alfie's co-pilot that made him a bit different than his fellow space travelers. Pierre was born with hemifacial microsomia a congenital birth defect. Alfie didn't mind that his best friend looked a bit different, but the other children at school were not as kind.
Pierre was often teased by the other students for having a face that didn’t look the same on both sides. One eye was a little lower, and his mouth was lopsided. "FREAK!" the kids taunted. "He looks like an Alien!" they cried. "Go back to your own planet!" they jeered.















The bell rang signaling recess had ended for the day. Slowly, the children made their way back into the school building for lunchtime. Alfie stayed back to help comfort his friend who was once again being bullied by other students.
"I just wish they would stop teasing me. If only the other kids understood maybe they wouldn't be so mean." Pierre cried. "Sometimes I wish I could board a rocket ship to space and never come back. BOOM! Suddenly and without warning a spaceship crash landed on the other side of the playground. The boys examined the ship and tried to figure out what to do next. "Well. what are we waiting for? Let's board this ship and fly it all the way to space!" Alfie exclaimed. "I'm not so sure this is a good idea, Alfie." Pierre worried. "Pierre, you just wished to fly away to space and a rocket ship magically appeared". That is definitely is good sign. Besides if I'm going to space for the first time, I'm going to need an amazing co-pilot for the journey." Alfie explained. After a bit more convincing, Pierre agreed to board the ship and explore the galaxy.





Upon boarding the ship, Pierre and Alfie located some spacesuits and put them on. "The first rule of being an astronaut is to always wear a spacesuit." Pierre reminded Alfie.
Once settled into the spaceship Alfie wanted to ask Pierre some questions to get to know him better. One should always get to know their co-pilot before exploring the galaxy. "Hey Pierre, what exactly is dysphagia?" questioned Alfie. "Dysphagia is difficulty moving food or liquid from the mouth to the stomach," Pierre said. "That's true." the spaceship said. There are four types of dysphagia which include oral, pharyngeal, oropharyngeal, and esophageal dysphagia. "Wow, the ship talks" exclaimed the boys. "I sure do" said the ship. "Let me tell you a few more things". "Okay!" the boys shouted with glee.
"Okay." said the ship "Some other things you should know is that oral dysphagia occurs when there is difficulty using the lips, tongue, or teeth to control food or liquid; additionally, weakness or discoordination of the jaw or cheeks results in this type of dysphagia. Furthermore pharyngeal dysphagia is a problem with the timing and or coordination of pharyngeal structures during the swallow. Oropharyngeal dysphagia occurs when there are difficulties in the oral and pharyngeal stage of swallowing. Esophageal dysphagia occurs when the food or liquid doesn't make it to the stomach. Alfie, your friend Pierre has hemifacial microsomia which is a condition were half of one side of the face does not grow normally. Pierre has a narrow asymmetrical jaw, a small tongue, and abnormally shaped teeth. These differences in his face make it difficult for him to chew and swallow. Like Pierre many people with hemifacial microsomia have oropharyngeal dysphagia."









"Wow that's super interesting, tell me more!" Alfie said with excitement.
"Okay, Pierre also has congenital heart disease which is caused by abnormal development of the heart. Like many people with this disease, Pierre sometimes experiences shortness of breath and fatigue. These things sometimes impact his ability to swallow and finish a meal. People with congenital heart disease typically have esophageal dysphagia. For people with congenital heart disease dysphagia typically occurs as a result of the hardening of the esophagus. This hardening narrows the esophagus which increases the risks of food and liquid getting stuck in the esophagus" the computer informed.


















Case
History
Oral Mech
Bolus
Administration
MBSS



FEES




The boys landed on an orange planet called the evaluation planet. There was a mini space rover that said, "Please come aboard, our first stop is case history." Alfie asked, "What are we going to do here?". The rover responded "This is where we will learn about how Pierre developed and grew, we'll also learn if he takes any medicine, the kinds of foods and drinks he currently eats, and previous surgeries that could impact how to best care for Pierre."
Alfie was still confused, and asked, "What's an evaluation?" The rover said, "It's like doing a giant puzzle, we have to find all the pieces about Pierre, when all these pieces are put together, it makes a picture of who Pierre is." exclaimed the rover.

Case History









Pierre told Alfie, "My mom told me when I was a baby, I was born earlier than expected and had to get surgery because my heart needed to be fixed to help pump my blood, help me breathe , and be able to eat. When I was little, I had something called a nasogastric tube. This tube went in through my nose and down into my stomach. It that gave me food so that I could grow big and strong like everyone else. I had a big team of helpers like doctors, dieticians, and therapists that would sing songs to me, read books, and help me learn to do movements by myself. Right now, I have an older brother and parents who are my helpers." Pierre said, "I don't know what to do I've been small and skinny my whole entire life, I just wish something could help."










"Is there a reason why you leave class during snack time?" Alfie asked shyly. "Yes, I have to take medicine to help my heart until I get my next surgery." Pierre explained. Alfie then went on to ask, "What about eating really slowly? I noticed you fell asleep while eating your graham crackers." Pierre responded, I just get tired eating things, it takes too much work, sometimes crumbs fall out of my mouth and it takes a long time to swallow. "Oh, I see", said Alfie. " What happens next?", he asked the rover? The rover replied, "Drive around the corner to oral mech land, that is where you will learn why the parts of your mouth are important for eating and drinking."


Oral Mech
- Cough
- Clear throat
-Test face muscles
- Silly Faces
--> Teeth
--> Lips
--> Jaw




The alien looked at Pierre's mouth and had him play a silly game with all the parts of his face. The alien said " I see you have some teeth missing, one side of your face falls a little lower than the other, and one side of your face is weaker than the other." Pierre looked sad when he heard that, but Alfie patted him on his back and said "You're my friend no matter what. Let's see what else we can learn, were in this together pal!" The alien said, "Please find your way to the food swallowing station, the big name for this is called bolus administration. That just means making food balls in your mouth by chewing and making them small enough to go down your food tube."

Bolus Administration
0. Water
1.Nectar juice
2. Chocolate ensure drink
3. Honey
4. Pudding
5. Boiled chopped beef with gravy
6. Boiled sweet potato cubes
7. Cookie
You did best on a level 2 and level 5!






The next alien gave Alfie some instructions, "I want you to read this list for me while Pierre tries these different foods and drinks, the big thing about this station is that the foods and drinks are different textures, shapes, and sizes. Some people can eat all of these just fine, and others need extra help by changing their diet or giving them special stratigies to use while eating." As Alfie read the list, the water spilled out of Pierre's mouth. The next liquids stayed in Pierre's mouth after he used his fingers to hold his lips together. When Pierre ate the boiled sweet potato cubes it took him a really long time to chew and swallow them. "Hmmm, since you had a hard time with the sweet potato cubes we won't give you the cookie, because it will be even harder to chew and we don't want you to choke on any unchewed pieces" the alien said. Then the alien said "Come with me we have one more place to visit."
X-ray swallow
(Modified Barium Swallow Study)
(MBSS)
Video Camera In your Throat (Fiberoptic Endoscopic Evaluation of Swallowing)
(FEES)





A new alien greeted the boys, "Welcome to where the road divides. You must pick the correct route to get home. The first option is the modified barium swallow study (MBSS), this is used if you want to look at the chewing and swallowing stages through an x-ray. You'll choose the MBSS if you want to see every stage of the swallow. The second option is the fiberoptic endoscopic evaluation of swallowing (FEES); during this study a long straw like tube goes in through your nose with a video camera attached and down your throat. Using the camera you can see your voice box while eating and drinking." You'll choose this option if you only want to look at the throat. Alfie looked at Pierre and said "What do we do?" "Well, we know that I had a hard time chewing and food tends to spill out of my mouth. Sometimes it even feels difficult to breathe when I have to much in my mouth at one time." Pierre said. "I think we know where we should go." stated Alfie.


X-Ray Swallow
(Modified Barium Swallow Study)




At last, they made the right choice together. Alfie waited in the rover while Pierre underwent the MBSS. It was determined that Pierre should be on a level 2 mildly thick diet and a level 5 small and creamy based foods called "minced and moist". The study revealed the entirety of Pierre's swallow function, which showed difficulty making ballls of food, pauses during the swallow, and food stuck in his throat. The alien recommended that Pierre participate in swallowing therapy with the swallowing therapist (speech-language pathologist) at the next planet to address the findings.















Once Pierre and Alfie reached the next planet, Alfie asked what is this place? Pierre responded, "This is Treatment Planet! There are many different types of treatment to help someone with oropharyngeal and esophageal dysphagia to make eating easier but it all depends on the cause of dysphagia". "Wait a minute, what is the cause of your dysphagia?" Alfie asked. Pierre explained "The cause of my dysphagia is sensory, structural, and motor. The sensory deficits from my oropharyngeal dysphagia include a delayed swallow with decreased pharyngeal sensation and the inability to form a good bolus due to decreased buccal sensation. My congenital heart disease causes esophageal dysphagia, there is a decreased amount of sensation in my esophagus so sometimes food gets stuck.
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"To be a star you must shine your own light, follow your own path and don't worry about the darkness, for that is when the stars shine the brightest."
- Rosemary Griffin

One bright sunny day, Pierre and Alfie were at recess playing their absolute favorite game, space adventure. Alfie loved anything to do with outer space and often convinced Pierre to be his co-pilot for missions. No matter how treacherous the mission was, Pierre and Alfie always returned to earth safely just in time for lunch.
However, there was something about Alfie's co-pilot that made him a bit different than his fellow space travelers. Pierre was born with hemifacial microsomia a congenital birth defect. Alfie didn't mind that his best friend looked a bit different, but the other children at school were not as kind.
Pierre was often teased by the other students for having a face that didn’t look the same on both sides. One eye was a little lower, and his mouth was lopsided. "FREAK!" the kids taunted. "He looks like an Alien!" they cried. "Go back to your own planet!" they jeered.















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