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My Son's Achalasia: A Swallowing Disorder

My son was diagnosed with an esophageal motility disorder at the age of thirteen termed achalasia.

A chest x-ray (CXR) showing achalasia (arrows point to the outline of the massively dilated esophagus).

A chest x-ray (CXR) showing achalasia (arrows point to the outline of the massively dilated esophagus).

My Son at 13 Years of Age

A rare swallowing disorder, achalasia, is not very common in young people. However, my son was diagnosed with this esophageal motility disorder at the age of thirteen. At first, our family doctor thought that his symptoms were caused by stress from school and social pressure. Not the case.

What Is Achalasia?

When you eat or drink anything, it goes down your esophagus from your mouth to your stomach. There is a valve (sphincter) between the esophagus and the stomach that opens and closes. When one has achalasia, this valve does not do what it is supposed to. There is a malfunction in the nerves, and when it does not open, it causes the food or drink to come back up.

Barium X-Ray

Our family doctor sent my son off to a specialist to have testing done. The first one was a barium x-ray. You drink a liquid then have your esophagus x-rayed. This will show if your esophagus is dilated—meaning enlarged or widened then narrowing on the lower end—and if the barium solution stays in the esophagus longer than average before going into the stomach. If so, achalasia is present.

Endoscopy

The next test was pretty horrific for a thirteen-year-old to have to endure—an endoscopy. The way in which this is done is a tube with a camera is put down the throat and into the area where the valve (sphincter) is between the esophagus and stomach. He was given something to help him relax but was fully awake for the procedure. It did not look like a very pleasant experience.

Esophageal Manometry

Then, the esophageal manometry test was done, and this is quite similar to the last test. This measures and records muscle contractions while you swallow. For someone without achalasia, there would be pressure waves recorded.

Gastroenterologist

After the above three tests were done, it was back to the family doctor to find out that my son did indeed have achalasia. The next step was to go see a gastroenterologist, who was a three-hour drive away from our home. After going to the appointment, much to our disappointment, my son had to go through all the same testing again as the specialist wanted it done in his own hospital.

Treatment for Achalasia

There are three types of treatments available for achalasia. My son tried two of the three.

  1. Botulinum toxin injection
  2. Balloon dilatation
  3. Surgery

The Botox Injection Only Worked Temporarily

First was a botulinum toxin injection. An injection into the esophagus by an endoscopy is done to relax the muscle in the sphincter to allow food to enter the stomach. This worked for about one week until the symptoms returned.

The Balloon Dilatation Did Not Help

Second was a balloon dilatation. A balloon is inserted by an endoscopy into the sphincter and blown up to enlarge the opening. In most cases, this works and needs to be repeated every few years. However, it did not work for my son.

Surgery Was the Last Option—We Chose to Opt Out

There was a third option which was to have surgery done. This is where they go in and cut the sphincter. It was explained to us that if my son was to have this done, there could be problems down the road. They told us that if he were to have too much to drink, say at a party, and need to throw up, he might just have to have his stomach pumped. My son, by this time, was seventeen. All of these doctor visits and procedures took almost four years. He decided to live with the achalasia rather than have the surgery done.

He is now twenty-five and still has the same problem but puts up with it. He eats foods that will go down easily and always has a glass of water in front of him every time he eats.

The treatments do help some people, but there is no cure for achalasia, and normal functions never return.

Note

I wanted to add that I am in no way an expert on any medical conditions. I have tried to explain here, in layman's terms, what achalasia is and how it affected my son.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2011 Susan Zutautas

Comments

Susan Zutautas (author) from Ontario, Canada on January 13, 2015:

Peg, My son has learned to live with achalasia and seems to be doing alright with it. He knows what causes it and how to deal with it when it happens. Thanks so much!

Peg Cole from Northeast of Dallas, Texas on January 10, 2015:

I had never heard of this condition. So sorry for the diagnosis in your family. It sounds painful. Surgery is not always the best answer. Perhaps a cure or medication will be developed that will help.

Susan Zutautas (author) from Ontario, Canada on May 10, 2014:

So sorry to read you have achalasia Leah and I wish you all the best.

Leah on May 08, 2014:

Thank you for all of this. I was diagnosed with Achalasia two years ago at age 20. It was a very long testing process but worth it to know what the problem was (especially considering I had about 3 doctors tell me it was heartburn.) I have to agree with you when you said mental challenge!! It's a rough deal trying to swallow, but the hard part is knowing every swallow is going to be hard. Also food is a celebration and you are never able to truly enjoy it. :-( it's nice to know I'm not alone. :-/

Susan Zutautas (author) from Ontario, Canada on February 22, 2014:

Five, wow that must have been rough! I hope that they find a cure or some kind of treatment for achalasia soon so that all the people who have this condition no longer have to suffer with it.

I wish you all the best and thank you for leaving a comment Heather.

Heather on February 20, 2014:

Thank you for sharing this. It's great (maybe not so much) to hear that someone around my age is experiencing the same thing. All too often, you only hear of older people having the condition.

I was diagnosed with Achalasia at 5 years old and am turning 25 in May. I had the myotomy done when I was 5 and then ended up having it redone when I was 17. All arrows are pointing in the direction of another myotomy in the near future. I also had a g-tube for 12 years.

It's great to hear that your son has done so well, kudos to him! And keep up the great work!

Susan Zutautas (author) from Ontario, Canada on November 16, 2013:

Anna, Thank you so much for coming back to let me know this. I will look into this for my son. So happy to hear that your family member found help through this, and I hope that it continues to help them.

Anna on November 16, 2013:

Hello again, I did some further research on the website (Herbs Solution by Nature) and it is not legit. But the family member of mine (with achalasia) did an external laser procedure followed by a herbal supplement plan which he claims helps/ed him tremendously. The website for the company is www.naturalplantion.com , maybe you can find a laser technician in your area.. Good Luck

Susan Zutautas (author) from Ontario, Canada on October 20, 2013:

I've never heard of Celseton, or of the website that you mention, but I will have a look to see what they're all about. If I learn anything I'll post back here what I've found out. Thank you for leaving this comment as I'd love to find a way to help my son in any way I can, and others that suffer from achalasia as well.

Anna on October 19, 2013:

I have a family relative who also suffers from achalasia, has had 2 previous surgeries with no results. I came across this website called Herbs Solution by Nature, they have a supplement called Celseton which they claim can cure the ailment within 3 months. Has anyone ever heard of this company ? and are there any pros and cons ?

Susan Zutautas (author) from Ontario, Canada on June 26, 2013:

Mary, When we went to the specialist I was very surprised to see how many people there were with the exact same issue. Matt was the youngest in the group. I only wish this was something he could outgrow. Thanks for stopping by. Always nice to see you.

Mary Craig from New York on June 24, 2013:

Our wonderful bodies sometimes have problems we've never dreamed of, this being one of them. While I've known people with swallowing issues, I've never heard a name associated with it.

How horrible for your son to have experienced this at such a young age.

Thank you for sharing this terrible experience with us, it just may help someone else.

Voted up, useful, and interesting.

Susan Zutautas (author) from Ontario, Canada on October 23, 2012:

Judi & GoodLady, Thank you both. Matthew has always wanted to gain weight but with this condition it seems a little difficult for him but he is a very healthy man considering.

Penelope Hart from Rome, Italy on October 22, 2012:

You have a brave son. It's so tough to have a permanent disorder. Your son (and you) seem to be coping fine, though it must be frustrating. thanks for explaining the procedures - and what your choice was.

Judi Brown from UK on October 22, 2012:

I haven't heard of this, but I did have a phase of not being able to swallow food easily when I was in my mid-twenties - more stress than anything, I think. Sorry that Matthew has to live with this, but good that he is coping.

Susan Zutautas (author) from Ontario, Canada on February 07, 2012:

RH, I'd never heard of it until my son and I was amazed when we saw how many people actually had it when he was seen.

Kelly Umphenour from St. Louis, MO on February 07, 2012:

Susan - I had never heard of this before! I think I have a friend who needs to read this - thanks a lot I am sharing and passing this along! Wonder how many other people have never heard of this????

Susan Zutautas (author) from Ontario, Canada on July 08, 2011:

Thank you prasetio and sorry for the short delay in answering your wonderful comments.

prasetio30 from malang-indonesia on January 23, 2011:

I thought experience is the best teacher for us. With your sons experience you can share this for us. Very inspiring hub and very helpful. Thanks for writing this, very informative. Send my warm greeting to him. God bless you.

Love and peace, Prasetio

Susan Zutautas (author) from Ontario, Canada on January 22, 2011:

ImChemist,

When you are setting up your hub after choosing your keywords you can pick which style of hub you want as a set up. There are three styles I think. You can go into the hub and edit it and change where your picture is placed by moving it down and to the left to get the 3 adsense blocks. Hope this has helped.

ImChemist on January 22, 2011:

Thanks for your useful hub , but i have question unrelated to this hub ! can you help me and answer it.

How you make this 3 adsnese block appear in the body of the hub even no picture within the hub !!

Susan Zutautas (author) from Ontario, Canada on January 18, 2011:

Thanks hillrider. At the time medications were not offered and he seems to be doing alright just coping with it himself. I have read about some of the meds available for this, however because of possible side-affects and the fact that he is doing alright without, we will just leave well enough alone for now but if the time comes when needed we check into them.Thanks so much.

hillrider from Mid-west United States on January 18, 2011:

Susan, your son seems to have made the proper choice as a far as the surgery since it has been so long and he is coping. That is always a tough choice and as a parent I am fully aware how difficult this decision must have been to make.

I am sure you are aware but just in case, there are certain prescription medications that have been proven to provide at least moderate help to some suffering with this condition. I have the web site and will leave it and a little info here. I feel a fool as I am aware we all have the same internet yet it can't hurt, so please forgive me if it is redundant for you. Just trying to help...

oral medications that help to relax the lower esophageal sphincter such as nitrates (for example, isosorbide dinitrate [Isordil]) and calcium channel blockers (for example, nifedipine [Procardia] and verapamil [Calan]);

http://www.medicinenet.com/achalasia/article.htm

Susan Zutautas (author) from Ontario, Canada on January 18, 2011:

Thanks so much for all the comments and for stopping by to read this. Very rare to find achalasia in someone so young as it usually does not happen until someone much older.

Liz Elias from Oakley, CA on January 17, 2011:

Oh, that is horrific! Poor kid! I never could understand why these damned doctors want already-done-tests repeated! It is only further trauma for the patient, especially when that patient is a child! IMO, they just do it to get more money!

Meghan on January 17, 2011:

Poor Matty! When we first started dating, I never understood by he kept stealing my drink at dinner, haha! :)

Pamela Oglesby from Sunny Florida on January 17, 2011:

This is a great hub for other parents whose children might have this problem You were very detailed. rated up.

Linda Rogers from Minnesota on January 17, 2011:

Thanks for sharing your sons experience with us Susan. I am sure you are helping someone out there who has been diagnosed or someone trying to figure out what the problem is.

Christy Zutautas on January 17, 2011:

Poor Matt! Great hub Susan. Very informative and it might help other parents to recognize that their child is suffering from Achalasia.