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Achalasia in my child

Posted , 9 users are following.

alison24649
alison24649

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 😊

2 likes, 21 replies

21 Replies

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  • Myachalasia
    Myachalasia alison24649

    Posted

    Hi Alison,

    Here someone who might understand you. Im so sorry for you that this is happening to your son! This disease sucks big time and as a parent makes you feel so powerless... 

    My son just turned 7 and was diagnosed with achalasia when he was 6.

    He has had 2 dilatations but those didn't give him any relieve. So, since he was diagnosed he has a nose tube. Because of that he regained a normal weight again.

    This thursday we're going to the hospital for a heller myotomy. I live in Holland, the POEM treatment is only possible here from the age of 16. If that weren't the case I think I would have preferred the POEM instead of the HM.

    Very hopefull that the heller myotomy will help my son. Nerve-racking!!!!

     

    • alison24649
      alison24649 Myachalasia

      Posted

      Hi, oh my gosh I am truly so sorry to hear of your awful time as a parent and the suffering your poor son has to deal with . I totally understand how you are feeling, its truly awful isn't it. It is heartbreaking to watch your child in pain and deteriorating in front of you. I'm pleased to hear the tube is working. I'm stuck for words but want to wish you the best of luck on Thursday with the operation, I will be thinking of you both. I can imagine you are absolutely terrified at the thought but this could change his life so keep positive and please let me know how he gets on. I would like to keep in touch, sending best wishes to you both . X
  • Dodoman7642
    Dodoman7642 alison24649

    Posted

    Personally I would like to know the causes of this torterous disease. My gullet closed up completely I put it down to stress but when a child gets this disease its obviously not stress whichmeans different treatment needed.

    I hope they find a cure not for me but for children facing a life time of this is unthinkable so sad. :-(.

    • AlanJM
      AlanJM Dodoman7642

      Posted

      It is to do with the muscles that control the peristalsis, the way that food gets pushed town the system by contractions.   It is the nerve endings that send the signals to the brain to drive the muscles that seem to be the problem, and typically the lower oesophageal sphincter gets clamped tight shut.   There is not a cure as such, but the problems can be alleviated by surgery to reduce the tigthness of the muscles, thereby allowing gravity to let the food through by gravity.   Stress, tension and anxiety can tend to make the nerves more tense and make the condition worse, so relaxation, if possible, can make things easier.
  • Dodoman7642
    Dodoman7642 alison24649

    Posted

    Please dont worry to much because one thing I did read is nobody has ever died from achalasia So be strong. Surgeons can perform miracles today.
    • AlanJM
      AlanJM Dodoman7642

      Posted

      You are right, but you do need to be careful about continuing to take in sufficient nutrition through your system and suffering from malnourishment because that aspect can be a serious health problem as a side effect of achalasia at its worst.
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