Our 11 year old daughter has achalasia

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Katie was diagnosed after a 2 yr battle.She has been through so many tests we do not know how she has coped.Katie is a twin andis 2 stone lighter than her sister.We are now waiting for a date for surgeryat Manchester Childrens Hospital.Katie is vert calm about the op she just wants to feel better than she does now.

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5 Replies

  • Posted

    Hello, my Daughter is 14 now, she developed achalasia when she was 6, she has had lots of treatments, including an unsucessfull heller myotomy.

    She is great, happy and doing well at school and atheletics. she uses a trampoline to get her food own, it works for us, and has a soft diet, and chocolate complan most days.

    its quite lonely, and feels quite desperate at times I know, contact me if you like.

  • Posted

    Hello

    My nine year old daughter has been diagnosed with achalasia recently. She is very underweight, and the first type of treatment of botox did not work. We are now waiting for her to have the operation. Sometimes she can keep nothing down at all despite us only giving her food that has been recommended by the hospital. It is very worrying for us. Thankyou for your posts they show that she may be able to live a normal life again in the future.

  • Posted

    October 6610,

    I know how worried you must be about your daughter but be assured, you will find a way through this no matter if life is a little inconvenient in the future for her.

    Please take time to read as many of the postings on here as you can. You'll discover that all of the cases are different in their gravity but everyone, in their own way is getting through no matter what age they are.

    I was a child too, when I was discovered to have the condition. I've lived virtually my whole life with it, without medication but my body found its own way of dealing with the problem. That was over 40 years ago when medicine was, compared to today so far behind. Your daughter has so much more to look forward to with future care compared to what was available to me.

    If I can just give you one piece of very and essentially important advice,. when she does try to eat, its terribly important that she remains calm and has absolutely nothing going on around her to make her feel any anguish. Im sure your the most caring of mom's but if she sees anything by way of worry in yourself it will worsen how she feels,. I know this from my own experience in my early years. My own mothers reactions un-nerved me almost to the point of distress and even now I do everything I can to avoid thinking of the past when Im eating, because it can and does trigger the emotions which make my own condition almost impossible to deal with, so strange its effects can be.

    Wish you much success for your daughters future in dealing with the condition. It will take time but she will get through it.

    Mike.

  • Posted

    Thank to those who replied to our posting,Katie had Hellers op in Feb by keyhole surgery.She recovered really well after surgery with no complications.When she came home she started to eat normally,trying most foods and managed to keep them down.She has now put on a stone and is doing fantastic,we have had one episode of sickness about 2 weeks ago we are not even sure this was Achalasia could have been because it was warm and she had been playing football.We have a follow up app in May,we feel Hellers Op is the best thing for this condition.It has made such a huge difference to Kates life and to ours as a family. smile
  • Posted

    HAPPY TO HERE EVERY THING WENT WELL FOR YOUR DAUGHTER.I STARTED HAVING TESTS IN FEBUARY.I HAVE BEEN TOLD I HAVE ACHALASIA AND HELLERS MYOTOMY WAS TALKED ABOUT I JUST WANT IT DONE I FEEL TIME HAS STOPPED AND I HAVE BEEN FORGOTTEN.david777

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