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Pediatric Achalasia

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d69818
d69818

Hello fellow members of this forum and beyond, 

I've a 15 year old daughter, who's been suffering from Achalasia since Apr this year. Since then she lost 22 lbs. She used to be an athlete and also very active in all aspects of school life but now she has to give up on the sport she love, and just concentrate on academic and club activities. Although she's a fighter and she's been trying to stay upbeat, manage it as much as she could, the physical and emotional drain are very obvious on her and on us. Being a parent, it's very hard to look at your kids suffering and you can't help with it. I tried to read and learn a lot about Achalasia and offering her useful tips and foods I cook to provide her enough nutrition but all those are not working well. I don't know what to do...I asked those useless "why her, why not me?" questions numerous times. I don't know what's the best way of helping her at this point. We talked to a surgeon on POEM already but my daughter is not ready to go with the operation yet, so we want to try all our best to manage it. 

Being desprate to find a best way to help my daughter, I'm sincerely asking for your help, please offer me your advices, anything would help. Thank you All for your time listening to me and wishing you All very Best.🌻🍀

1 like, 36 replies

36 Replies

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  • robert69209
    robert69209 d69818

    Posted

    There is hope. I was diagnosed with achalasia when I was 19. I am now 69. I had a dilitation when it first was diagnosed. I was fine for 35 years. It started getting bad about 15 years ago. I have managed my symptoms on my on. I have not consulted a doctor. Some tips;

    1) eat small meals

    2) eat soft foods

    3) when food gets stuck, suck slowly on dark chocolate (at least 70%). Many time the spasm will release

    4) If getting chest pais, drink cold whole milk. It should relieve the contraction.

    Hope this helps.

    • d69818
      d69818 robert69209

      Posted

      Hi Robert, 

      Reading your message is like taking a fresh air! Based on what I've been reading on this condition so far, I would never imagine just one dialation could work that long, good for you, although I bet it might ask for a lot of will power and dedication to stay relatively healthy and upbeat. And you've been managing it for the last 15 years, that's just unblievable. thanks for the tips you offered and please keep adding if anything else that might come to mind that helped you on all these years. One question I have for you is that when the food got stuck, didnt you get an urge to regurgitate right away? My daughter would go for it 4-5 times during a meal so I'm just wondering how one could suc on the dark chocolate when the food stuck.

      Really appreciate your advices and encouragement, thanks.

    • robert69209
      robert69209 d69818

      Posted

      Regurgitating is the last option when food gets stuck. If your daughter gently sucks on the dark chocolate, and lets it melt slowly, it should not get stuck. The flavanoids in chocolate can help alleviate the spasm. Somtimes it takes 4 small pieces, eaten one at a time.There is no guarantee, however, this has been the most effective tool that I have. FYI, I have the most trouble with dense foods, and dry foods. I hope this helps.
    • d69818
      d69818 robert69209

      Posted

      Unfortunately she can't help but regurgitating, and doing it a lot. Thanks for your tips about chocolate, I'll let her try. Thinking back, what was the hardest part in early days when you had the Achalasia? Eating at school, in public? Anything that your parents did that was really helpful or you liked? Although it might not have been easy, it's just encouraging to know that you came a long way without a surgery. Hope you keep finding better ways to manage your symptoms🍀

    • robert69209
      robert69209 d69818

      Posted

      Please remember that it has to be dark chocolate , at least 70% cocoa. To answer your question, it was all difficult before my dilitation. I could never finish a meal without throwing up. After the dilitation, I lived a normal lfe for  about 35 years. If you ever choose a dilitation, make sure that you pick the best and most experienced doctor. There is some risk.
  • Robert13450
    Robert13450 d69818

    Posted

        Being 64 and having Achalasia Type 3 for the past 7 years I can't imagine what , as a parent you are going through. I had POEM done a little over a year ago and have had major problems after from acid having a free path to come up my Throat and into my vocal cords. Knowing what I do now even though she is young I would consider if you need to remove the sphincter then you might want to consider s heller myodomy where they do a wrap at the same time whereas when they do POEM they can't. I know it's more of a surgery but you are still usually home the following day and it might save her some unnecessary suffering. I'm sure there will be people to disagree but at least do her the favor of talking to your doctor about it. Other than that make sure that she eats nothing at least 4 hrs before bedtime. I had to change my dinner and lunch so I eat my main meal at lunchtime and a very light dinner. I don't know if you got her a wedge to elevate her head when she sleeps but might help. You are doing the right thing looking for the best foods. Has she had a Bravo ph test? Are they positive it's Achalasia? It's very rare. You seem very upset and with good reason if you ever want to ask any questions of me I would be more than happy to help in any way possible.  Good luck feel free to contact me anytime 

    • Cowgirluc
      Cowgirluc Robert13450

      Posted

      Hi Robert. I sure wish i could eat any chocolate ! It makes mine spaz bad . My type 3 you never know . Just a blech sets mine of but I'm living thru it.

      I am DLI g great with the heller surgery. I have had to do many life change. Done to 7cc of pain meds hope to off them soon and see how my other pluming works. Gotta try !

    • Robert13450
      Robert13450 Cowgirluc

      Posted

         That's all we can do cowgirl. I can laugh a little now about it but at the time I thought I was having a heart attack after every meal , not funny at the time. 

          I wish you well and hope you keep it under control. Take care

    • Cowgirluc
      Cowgirluc Robert13450

      Posted

      I 2nt to post op today and I asked doc if he did that POEM and he said no not no more he only dies the heller with dor/ fundor cause he said it was a more successful, I dont have any acid reflux because of it thank goodness😊 . and I'm free to eat what I can tolerate. But back to gastric doc to see about my

    • d69818
      d69818 Robert13450

      Posted

      Thanks Robert for your kind advice. Yes the doctors did all the necessary testes, such as Barrium swallow, endoscopy and manometry. As a result, she's been diagnosed as Type2. No acid reflux and no spasm, knock on wood. But regurgitating a lot, loosing weight in a very fast pace. And it's very hard to watch her suffer and not much I can do to help. It's hard for me not to cry talking about her symptoms either with doctors or other friends. I would like to be able to communicate better with my daughter so that I could still make her feel normal while try to pursue her to eat what's suppose to good for her. Being a typical teenager, she doesn't always agree, so I don't know what to do. I hope I can get more tips on that as well as how to manage to be able to keep some food down. We might eventually go for a surgery but don't want to rush it giving her age, the duration of the effect of surgery and all the side effects after the procedure is done. I appreciate all of your suggestions and might rethink some of our decisions. Hope you feel and get better day by day🌻

    • Cowgirluc
      Cowgirluc d69818

      Posted

      Your asking how long it took to heal from surgery? In 2wks I was fine just had to GI through the eating part which is slower cause you are introduce to soils foods slowly . so in 6wks I'm fine and eating way better. Once that pain in my chest went away. I'm not sure on the type 2with regurgitating food I would surely try at this point. I also drink a scandi shake which taste good cause my taste buds are weird. But comes in vanilla , caramel , chocolate,banana cream . they are 580 calories with milk.

    • Cowgirluc
      Cowgirluc

      Posted

      By the way I understand Completely about how you feel for your child and want to do the best , at least she has an option to help her. I have a son who came down with juvenile diabetes at age 8. Having to go through giving him shots was the hardest thing I've had to endure with my child. I had to change his diet and by age 8thwy already had all that bad stuff as in chocolate bars. I'd find wrappers in his pockets. He even went as far as giving good blood reading ,he was going in bathroom I thought oh god place to do that ,well I want to bathroom after he checked blood sugars and it was blue. I asked him when his blood turned blue last I saw it was red. Well he was using the test solution, no wonder test came out fine. Kids and how you got a g9d laugh at thing our kids do ,but I know how your feeling. My son is now a healthy 29yrs old working hard 😊

    • Robert13450
      Robert13450 d69818

      Posted

      I know you are keeping track of what she eats. Has she tried eating very small meals but eating more often?  Chewing food a ridiculous amount of times might help a little. Also, it didn't work for me but might for your daughter and if it does wow . Try a drop of peppermint oil in a cup of tea before a meal and before bedtime as the oil relaxes the esophagus. Please if nothing else give this a try. If it helps you'll be her hero and you can sleep at night. Good luck and please let me know if it helps

    • d69818
      d69818 Robert13450

      Posted

      Thanks Robert for your suggession, I'll let her try for sure. The problem with teenagers is that they don't wan't to even try if they don't like something, and that adds on the difficulty to managing it. 

  • robert69209
    robert69209 d69818

    Posted

    If the time comes that you must do something, I would consider a dilitation first. It worked for me for many many years. It is not surgical and is pretty much an out patient procedure. Feel ree to asl any questions.
    • Cowgirluc
      Cowgirluc robert69209

      Posted

      I was scared to have surgery but I'm glad I did . I do have some small scares but that all Mt belly does not hurt . well only when I have a BM. Making me not want to eat on top of all the other stuff. Just when I can eat I can't go figure. I also waited awhile in pain prior to surgery so I'm sure my body in shock. Cheers 😊

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