Treating achalasia in 6 year old boy

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Our six year old son was diagnosed with achalasia last week after a barium swallow. He had been admitted to hospital with dehydration and weight loss after about 5 months of progressively worsening regurgitation during means, which wasn't helped by contracting a tummy bug a few weeks ago on top of it.

In a way we're relieved that we have a diagnosis now and that the condition seems treatable. He has a feeding tube, living off milkshakes and water, and we're waiting for an operation in three weeks time.

We had a chat with the surgeon a few days ago and she seems very good, having performed the operation successfully in children a number of times before. She suggests Heller myotomy using keyhole surgery but without fundoplication. In her view fundoplication isn't required in about 70% of cases and has its own risks and complications. If the fundoplication is needed, there is an option for doing later.

This sounds all very sensible to us, but we were wondering if anybody has experience with this procedure in a young child or would suggest alternative treatment?

Also, we were wondering what the long term prognosis is given that our son contracted achalasia at what seems to be a very young age. Is there anything we can do now to avoid potential problems in the future?

Thanks!

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9 Replies

  • Posted

    Hi,

    sorry to hear your son experiencing this at such a young a young age. I have just had my 4th proceedure to help clear my achalasia,had it over 15 years, but i have never opted for the Heller Myotomy surgery (to scared of the knife) alternatively i was treated with a Esophageal Dilatation - this is were they insert a ballon into the blocked portion of the esophagus to stretch or open it. Obviously there are risks with all surgery but i thought it could be another option that your doctor might discuss with you.

    Good luck!

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  • Posted

    I am so sorry to hear of your sons diagnosis (although I am sure you feared much worse) I was diagnosed in January but have been on a liquid diet since November. Needless to say, I have lost a lot of weight. My surgery is April 1 and is called POEM surgery. It is new and less invasive with a very high success rate. Minimizes scar tissue like some other procedures, so leaves opportunity for other treatment years down the road should something better be an option. There are videos of this proceedure on YouTube. I hope this might. I am only able to eat hot fluids and have found nothing alternative that gave me any relief. I am a big supporter of going natural for treatment whenever I can. Hugs to your boy. Let us know how his proceedure goes. All the best,
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  • Posted

    First of all, my sympathy for having to cope with this, especially when children's conditions are always tricky things to cope with.

    Achalasia does appear to develop at young ages for some people - but there is often a long delay in obtaining the proper diagnosis because it sometimes gets mixed up with perceptions of eating disorders and so on.

    The important thing is to be seen by an experienced surgeon and to have all the appropriate tests so that you get the right treatment / surgery at an early stage. So you are in a good place. My belief is that procedures with younger people tend to be more successful than for adults for whom the condition has been undiagnosed for a long time - but your surgeon will be able to tell you the situation better than anybody else.

    Some people do cope very well with the condition, usually because they have been diagnosed correctly, treated well with the right procedures at an early stage, and do not try to overdo things in the swallowing department, or persist with certain foods that give them problems.

    Tension and anxiety can make it worse, so trying to reduce anxiety levels about it would probably help, and you may be able to find ways of helping your son on this. Easier said than done though! But children are often surprisingly resilient.

    This may sound a silly thing to say when he has a feeding tube, but generally trying to make sure that nutrition levels are maintained, with liquids if appropriate, is also important. Sometimes people may find themselves reluctant to swallow anything because of the fear of things getting stuck half way down and creating regurgitation etc.

    It is an unusual condition, with a number of variations, and you will probably not find many people who instinctively understand it, but there should be a very good chance of his condition becoming very much better after the surgery.

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  • Posted

    Hi there. First off, I'm sincerely sorry that your child has to go through with this. My daughter has had achalasia for 2.5 years and is now 14. Diagnosis was difficult because there are not many cases presented in young people. She had lost a lot of weight and was quite sick before she was treated.

    She had a heller myotomy with fundoplication. This helped her for about 9 months and then she began to struggle again. For our family it began a new struggle which was with neuropathic pain. After research and such we found that she was not alone in these symptoms. Sometimes it just happens and you cannot predict the outcome of treatment.

    We are continuing to get her pain levels under control and she is getting better. It is a long process. My hope for you is that you have a good relationship with your doctors and are able to communicate well with them. Once we found a doctor to listen to her current problems, we were able to begin the road back to health. I will say that stress IS a factor for my daughter. It only makes it worse when you are wondering if it is going to be a bad day or a good one.

    Please keep your chin up. In our house we take it day by day and like everything - somedays are better that others.

    Take care of yourself and your son. Remember that if you are not satisfied with your doctors or what they suggest - press on. We did and then got the help we needed.

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  • Posted

    Hi I'm so very sorry to hear about this and I wish your son the very best. I also suffer from achalasia I am 14 and was diagnosed several years ago. The first larger surgery I had for this was a heller myotomy with fundoplication. Achalasia is such a rare thing especially in kids . The unknown is always a scary thing. I know it must be even scarier for you guys since he is only six but maybe this way you can treat it while he is so young so maybe this will help prevent it from being so bad in the future. I am sure this operation will help him at least be able to put some weight back on so if he requires further treatment it will go better. Also once he is able to eat proper food again expect and encourage him to maybe put on a few extra pounds than before. I wish you and your family the best and I hope you son is back on his feet as soon as possible
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  • Posted

    Can I put a question out there- once you have had treatmeant for your condition whether it be Heller Myotomy

    Or a ballon dilatation is it advisable for achalasia sufferers to carry on with a liquid and puréed diet or do you try and resume with ' normal' food stuff??

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  • Posted

    For my daughter the doctor had us slowly reintroduce regular foods. When she wS discharged from the hospital she drank ensure for the most part. It took a few weeks to get back to normal food, and we did it as directed. In hindsight, I think the length of time could have been shortened.
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  • Posted

    Thank you for comments. It is good to hear from others in a similar position; many of whom have come through the other side. We will have to see how it goes but any advice on recipes for afterwards would be really appreciated!
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  • Posted

    There are some recipes in the blue OPA booklet 'Swallowing when it is difficult' that you can obtain by ringing the OPA helpline on 0121 704 9860. Quite a few of them involve things that are easy to swallow - eg ice cream, yoghurt, custard and so on,sometimes mixed with the nutrition drinks that contain the various ingredients that one needs.

    So it is a matter of combining:

    a) the need for the right texture / composition of the food that will slip down through the system easily

    b) maintaining a balance of different nutritional elements, and

    c) personal taste.

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