SHARE

Join in solidarity by participating in a 1-Day Dysphagia Awareness Pledge. Visit www.dysphagiaawareness.weebly.com to find out the many ways to show support for those with dysphagia. Also visit National Foundation for Swallowing Disorders to check out other ways to make an impact.

Don’t forget to spread the news throughout social media and use #dysphagiaawareness so all can be aware of this debilitating disorder.

Sincerely,

Jonathan M Waller
MA CCC-SLP
Founder
Dysphagia Cafe

3 COMMENTS

  1. The important and timely information that you and the NFOSD, deliver is of immense help to clinicians, patients and caregivers alike. Keep up the great work. George Coussoule, Partner – Gourmet Pureed

  2. Our Dysphagia journey, by Wendy.
    Ethan did not speak at all first 2 years of his life. He threw up after every feeding. Ethan Woke up in the middle of every night screaming. I rocked him to sleep, Gary rocked him to sleep, we would both practically bounce him, in a quick pattern, to get him comfortable, as Ethan was always very uncomfortable and fidgety.
    I took him to Dr. B every week. Sometimes twice a week. Dr. B started saying I was an over
    reacting mother. I started to believe him. I thought it was me.

    Our pediatrician Dr. B., at Ethan’s two year check up, looked at both myself and Gary, and said, “some kids just throw up allot.” And then Dr. Ber said, “Ethan is slower than the norm.”

    Gary and I just said nothing, looked at each other and left.

    Ethan was screaming from his sleep one night, and I thought he was breathing funny.
    This was one week after his 2 year check up.
    I took him to a pulmonary dr.
    One week later, was by accident.
    My friend in my mah Jong group said, best dr ever, and cured my child.

    That was all I needed to hear.

    I called up my friend, got the Drs name and #.

    Called the office, did not even know what his specialty was.

    The nurse was really nice on the phone. She stated that it is a 6 month wait, however, about 3 mins. Before I called, they received a cancellation for 1 pm that afternoon.

    I said, I’ll take it!!!

    I got there, the dr ran tests on Ethan that lasted over an hour.

    Ethans lungs were so full of fluid, almost full blown pnemonia..
    and he had a double ear infection.
    He had two types bacterial infections in his nose, rating 1 – being the best, and 4 – being bad..

    Ethans bacterial 2 types- test results came back…
    4 +…

    We had to immediately start Ethan on a suction machine that could suction flem out of a rock, 4+ times a day, a nebulizer, 4 to 6 times a day, 7 different medications every day/3 to 4 times a day..

    And then, just when you think that is all..

    A week later, the pulmonary dr, sent us to the hospital for a swallow study…

    Gary and I were laughing when walking into register..

    Saying..
    What’s a swallow study..

    Well, when I found out, and was told the results..

    Let’s just say..

    The worst wake up call/moment in my life.

    They had Ethan sit in a car seat, had him eat and drink different types of liquid / barium so they could watch on the exray.

    Ethan’s epiglottis was not covering his bronchial tube with any drink.

    Every time Ethan drank, went straight to his lungs.

    This is why Ethan threw up after every meal.

    They then said we had to buy a special Newby cup, with the slowest speed, and buy simply thick, honey consistency. AND.. We had to put two entire packets in 6 oz of liquid, and shake till it was all distributed evenly.. Then Ethan had to drink this only threw this special Newby cup.

    Ethan was on this regimen from the time he was 2 to 6 years old.

    I ran out of the hospital so very quickly that day.

    I was sick beyond anything, and was angry, mad, furious, I felt misled. Betrayed, you name it, it was bad. Our
    sweet sweet Ethan. Who was suffering from the day he came home from the hospital to 2 years and 2 weeks old… All those dr visits, all of it.. And I was referred to as the “CRAZY” mom… Really???? That moment I knew. Right then and there. My gut, follow my gut and my instincts from then on, especially when it came to my children!!!! Mom and dad instincts, I think are most likely RIGHT ON!!!
    ONE week after Ethan started on the thickener, the throwing up completely stopped, and ethan said his first word.

    Every time Ethan had thrown up in the past it was because he was aspirating into his lungs, all because his epiglottis was not covering his bronchial tube in time, which, both Gary and I now both know this is called dysphasia, which caused Ethan to throw up clog up his sinuses and ears daily!!!!

    When Ethan started to speak, his entire life changed… He did not know how to deal with these new senses. He started to lick the furniture, floor, everything.

    That is because he was experiencing new senses that he did not have before, and did not know how to deal with this new world.
    One time, I was burping Ethan, when he was about 7 months old, he threw up in my ear, and the acid burned 80% of my ear drum.

    The Ent said in all his years he never saw quite anything like that.

    There is much much more to this story..

    I have to locate the rest of it.

    Ethan is now 11 years old. I love Ethan!!!

LEAVE A REPLY