Achalasia in my child

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My son was seriously ill in 2014 and ended up in a wheelchair and tube feed. He was 8 but wearing age 4-5 clothes. It went on for months before the correct diagnosis and he was wrongly treated for various other conditions along the way. He lost half his body weight. Thankfully he had the dilation surgery and a course of strong antibiotics to clear his lungs. He has since had another dilation , today he told me that it feels like it is coming back, I'm totally heartbroken for him as he dreads more surgery and it just doesn't seem to last long after. Are there any other parents with children suffering from this awful condition. I would love to have contact with someone who understands as its so rare in children. Thank you 😊

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  • Posted

    Hi Alison - I am sorry to hear your son has had such a difficult time.  I am wondering why they are doing repeat dilations on him.  The gold standard for treatment is a Heller Myotomy.  Dilations are reserved for those who are not able to have the surgery, usually the elderly or very frail.  Are you seeing a specialist who has lots of experience treating Achalasia ?  That will produce the best care plan for your son.  I hope he can gain strength and be a candidate for the surgery.  It is shown to be the best relief and the results last many many years.  Only needed to be repeated in isolated cases, and often due to an inexperienced surgeon doing the first surgery.  I hope this helps.  I have been living with Achalasia for 20+ years.
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    • Posted

      Thank you for your comment. We have been told that he may need this but they were really hoping he could grow a little more and reach his teenage years before it was needed at least. It's so good to hear that this has worked for you, I'm really hoping that he can also go on to have a normal adult life, he has missed so much of his childhood already through this. We havens care plan in place with our local children's hospital , I'm grateful to get some support from someone who understands, its rather lonely being a parent to a child where no other children have had the same condition and he feels isolated sometimes. He is doing so well now, back to a healthy weight and back to school, its so awful for him if it is starting to come back again so soon. Thank you for taking the time to reply, I really appreciate it, wishing you all the best in the future 😊
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  • Posted

    Poor kid---what a relief he eventually got the correct diagnosis! There's also a rather new treatment called POEM you might check out---perhaps he might be eligible for that? I had a Heller Myotomy (with a partial fundoplication) in 2007 in my 20s and it was highly successful, AND I haven't needed any additional procedures since then. Regarding his feelings that it might be coming back---I sometimes feel that way, too, especially if I eat too fast or don't drink enough fluids with meals. It's important to remember that normal muscle function won't ever be regained in achalasia (until they discover a cure!), so any treatment, surgery included, is palliative. Only gravity or fluids to wash the food down moves the food into the stomach. I don't know what type of behavioral modifications you've tried, but small things like making sure he's got a water bottle at school, figuring out what food reliably goes down, etc. might help with discomfort, or at least to prolong the time between dilations until he can get a more permanent treatment. He'll have to learn how to 'eat around' the achalasia, listen to his body----and if he's in pain, better to stop eating and wait until things pass than try to force it and risk damage to the esophagus. There's increasing amounts of research on this disease and better treatments than ever, so there's no reason to think he won't have a perfectly normal life! Best wishes to you!
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    • Posted

      Thank you for your message, it was really helpful to hear that it may just be part of the condition itself and I have read it to him as I think it will be a comfort to hear it doesn't automatically mean its returning. I have always tried to explain the importance of washing his food down, I think sometimes he just sees me as nagging mum. Thank you again
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  • Posted

    The diagnosis for achalasia is hard. I hope he gets a Hellers myotomy which works for most people.

    I hate the procedures having a camra forced down your throat isnt nice. Just make sure he gets the right nutritional fooods inside hm. Keep pestering the doctors if your not happy. I afraid there isnt a cure not yet anyway. Good luck.

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    • Posted

      Thank you for your message. The support and kind words have really helped us both this week. I appreciate your time so much.
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  • Posted

    It is always more poignant when a child is involved, but I think that the principle of trying to get the best long term treatment (which may be surgery) as soon as you can is just as important.   I can quite see the logic of the doctors giving a dilatation in the early stages because a) it can give relief, b) it can be done relatively quickly a nd c) sometimes people do manage on periodic dilatations, but it is true that for some people the effect does not seem to last all that long.

    I am not sure whether Great Ormond Street hospital have many cases referred to them, but it might be worth asking.   It does happen that children are diagnosed with this condition, and it is distressing that there are not any or many others who have experienced this.   You might try the Achalasia Google MeetUp group.   There is also an Achalasia Patients meeting scheduled for 5pm on Wednesday 9 March at 3rd floor, Brampton House, Hospital of St John & St Elizabeth 60 Grove End Road, St John’s Wood London NW8 9NH that you can look out for.   It is mainly adults but it would be a good source on information.

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    • Posted

      Thank you, I will research into the group. I'm finding it so helpful just having these messages of support. I truly appreciate everyones help and advice.
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    • Posted

      Hi Alison

      I too have achalasia and i am 63. I agree entirely with all the others comments. I would add that the cause of achalasia is still not known but believe to be due to nerve damage which may be caused by an autoimmune disorder or maybe even a virus.

      But its true to say that it spans the ages and anyone at any age can get it.

      The gold dtandard treatment is a Hellers Myotomy and a fundoplication to remake the valve to prevent acid reflux. I am one of the unfortunates who have had to have my myotomy repeated (fours days ago) but this is a rare event.

      Good luck with your son and I strongly suggest you find a surgeon who specialises in this surgery

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    • Posted

      Hi Alison

      I run the London Achalasia Meetup Group which is organising the meeting on 9th March with Alan.  There is a limit on numbers so if you intend to come to the meeting, please book your place through the Meetup site in soon.  Places are likely to go quickly.

      We also hold informal meetings once a month on a Sunday afternoon.  Our next one is on 21st February.  Recent attendees have included a four year old who had a myotomy aged one and a thirteen year old who has had two dilatations since he was four.  Both are doing ok, but know that eating is never going to be completely normal. 

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    • Posted

      Thank you, we are in the west country so a long way to travel but I'm really interested so will try to arrange to come up for a meeting in the future. It would be great to meet people and also for my son. If you could kindly let me know if the group has a webpage I can keep up to date with all the latest news. Many thanks. Alison 😊
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    • Posted

      Thank you for your kind words. I shall be making enquiries into the best surgeons for this condition as I'm happy to travel to anywhere to get the best for my son. 😊
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    • Posted

      Hi Alison

      You should be able to find us under "London Achalasia Meetup Group".  I don't think I can put the link on here.  Once you register you will receive notification of meetings.  There is a list of members, some of whom have added a profile.  There are three with children who are quite easy to find on the first couple of pages.  You could then message them if you think it might be helpful.  There is also useful information in the files under the "More" section of the site.

      Good luck with it all

      Amanda

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  • Posted

    Dear Alison, i am so sorry to hear about this terrible motility disorder your young son suffers with .I wish they could find a cure .Keep positive.
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    • Posted

      Thank you. We are looking forward with a positive mind. I feel a great sense of not being alone with all the support I have received on here, it's been a truly great help.
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