My 14yo son has just been diagnosed Achalasia type 3

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Hello all! I plan to read throughout many of your stories as I can to attain information about this new diagnosis for my son but in the meantime, I have many questions. After having the Esophageal Manometry, it was confirmed that T has Achalasia Type 3. He is a very active and bright young man who is quite frustrated with this "inconvenience" as he calls it. It is difficult for me as his mother to get T to be completely honest about how poorly this is effecting his everyday life because he would much rather pretend it does not exist. His physician, while seeing the extreme results during the Manometry asked T "are you not having more pain than you have described?" She was surprised by his responses which is typically what I get from him..."doesn't hurt that bad" "it's not that big a deal".  So, this is my dilemma. How do I submit to such a radical surgery at this point in time when T doesn't seem to be ready for it? What are your experiences? I read about "progression", what does that look like? Is it better to have surgery before the progression or do I wait for more severe symptoms that T can no longer ignore? Here are his symptoms now: difficulty swallowing which he compensates for by eating smaller amounts of food at a time and he eats less often, pain in chest when eating although this is very inconsistent(which is why I think he can ignore). Also, he was having episodes of throwing up food he had just swallowed but this has not happened in about three months....how did he get this symptom to subside for now??? I said T is very active and I mean VERY...he is on two Lacrosse teams, one of them a travel team but he does NOT eat enough in my opinion for a pubescent athletic boy. He has recently thinned out but I'm suspicious of a growth spurt which is normal to puberty at this age and maybe nothing to do with Achalasia effects. How can I tell? I should also mention that T suffers from migraines and has since he was 4 years old. He was diagnosed at a young age with mild Chiari 1 Malformation. Anyone else out there with this anomaly as well? We are waiting for his follow up appointment to discuss the results of Manometry test. I do very much trust the physician he is seeing but I want to be prepared as best as possible in making a decision for T. Any feedback would be greatly appreciated. I know I rambled and probably missed important information but my head is spinning over this diagnosis. 

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  • Posted

    Btw, after I gad the Heller's procedure done...I would go once a year or so and have a dilation done....which helps temporarily but causes scar tissue in the esophagus. 
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  • Posted

    Hello back,

    Can I ask where you are located, as we have a support group active in the UK. 

    We meet every month or so in London as that is central, and it would be invaluable for you to join us.

    Please go to www.meetup groups......and search for Achalasia and you will be able to join , there is no cost. You will then see links and details of our next date to meet.

    Do not lose heart you are not alone.

    Best Wishes

    Jan 

     

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  • Posted

    Hi Jttysmom, 

    I know what your son is going through. I am a 13 year old girl. I have type 1 Achalasia and I have had Heller Myotomy and Fundoplacation to fix it. I played volleyball and it was very stressful. I then had to quit volleyball because it would be dangerous if I got hit in the stomach with a volleyball. Also weight loss is a main sypmtom 

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    • Posted

      It may be that another sport might be better?  I know of one young man who is happy returning to football again afterwards and had not thought of sport being risky.   The stress is the thing to avoid though.

      I am glad they took your case seriously and did not put it down to eating disorder.

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    • Posted

      Im hot sure as I have a friend with Achalasia who also used to play track and lacrosse. Avoid stress at all cost, it makes it worse
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  • Posted

    Hi,

    I heard that you live in the US and I would strongly recommend Dr. Timothy D. Kane. He works with Children's National Medical Center and I have had him for my surgery. He preforms Heller Myotomy and POEM (a new procedure).

    Just thought you would like to know

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