Pediatric Achalasia

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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.🌻🍀

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  • Posted

    I myself didnt want a Surgery I been suffering with mine for a long time and boom 3yrs ago I came out in full force 😒 and so after thinking about pain or no pain I had the robotic heller mom entry w/dur fund.AND today I can eat with no pain in my chest. I do have stage 3 and I still have my spasm in esphogus but I can live with it. The bad pain in chest that made it hard to breath went away. But now my biggest issue is my bowels and hope it didnt spread throughout me waiting . Good Luck u think the poem be good .

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    • Posted

      Thanks for your reply Cowgirluc, and happy to hear that your normal eating is restored, although no surgery is risk or side effect free. Hope you continue do well and recover from the other health issues that you are facing with. One of the biggest culprit suspected in Achalasia so far is auto- immunity, in chich the body's immune cells attacking it's own organs, thus it seems some people with Achalasia are also affected by other type of auto- immune disease it seems.  I truly hope for the race for Immunology (a side product of Immune- Oncology) could find some cure for all these in the future. 

      If you don't mind me asking, how long did you go with management before you decided to go with the Heller's? What was the last straw? Btw, my daughter has Type2 and doctos said that's a better candidate for POEM.

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    • Posted

      When it started to bother me so bad was 3.5yrs and I been back and forth to ER. Doctors where I love had no clue but the tech who seen and told me . When I found out that that what my husband thought I had. IG it to where I couldn't take the pain of not eating g and getting thinner and thinner. So I went for it and beside not throwing up I got to say it dont hurt In my chest . I couldn't breath good cause of it. I know I was asperating a lot and made me sick with cough.

      I know all procedures have risk . but that pain is hard to live with. Tell her to be strong Aldo try those scandi shakes their easy to drink and digest cheers 😊

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    • Posted

      Good it worked for you. Thanks for the tips and encouragement. I wrote down the Scandi shakes on my list.🌻

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  • Posted

    It can be very dispiriting and a drain on the nutrition system. A friend's son was delighted to be back playing football again after his surgery, but I accept that you have to be ready to undergo the procedure. Otherwise it means building up liquid nutrition well ahead of physical activity to achieve the reservoir of energy.

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    • Posted

      Hi Alan,

      Yes, it's unbelievable how much we take it for guaranteed. I was actually thinking about asking you for some resources where I can talk with other parents who are in my shoes or people who had actually got it in young age. Thanks for telling me about your friend's son, that's encouraging. Did he directly go for the op without any balloon dialations or any other treatment? Was it HM or POEM? And how long it's been? Sorry for the questions, I've a lot of concerns for the op so maybe more statistics give us a better idea/ confidence to make our decisions. It's really great to hear from you, thank you.

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  • Posted

    Hi, I'm so sorry that your daughter is suffering with this ugly thing! I am 70 years old and was diagnosed with it back in the 2012. It wasn't too bad and I could function with it ok, but at the end of 2016, it got so bad I couldn't get anything into my stomach! I was stubborn, kept trying. Four days I went without food or liquids. I ended up going to emergency, my kidneys were starting to show deterioration. After many tests, my lower sphincter was only open enough to allow a trickle of liquid and my esophagus was extremely dialated! Couldn't get the manometry test because they couldn't get the probe past all the twists and turns!! I finally got the Heller Myotomy with the fundoplication last February and am so happy and thankful. I only wish I had done the operation back in 2012, when I was first diagnosed! My esophagus would not be so damaged now. I am able to eat anything I want, but I do have to be adamant about chewing my food extremely well before swallowing and drinking lots of water to wash it down past all those twists and turns! Don't wait too long before getting the operation, because you daughter can damage her esophagus too!  

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    • Posted

      Hi Loretta, 

      Thanks for your advice. So you went for the surgery after 5 years, it's amazing how you did be able to manage so long, and glad the op worked for you although it was that long delayed. As you said, my daughter is very very young and most of the surgeries I heard about only work for around 10 years in the best case. Thus we didn't want to go with the op right away, plus she wants to manage it. Her dropping weight is just making me worry...

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  • Posted

    Hi,

    It is not advisable to delay the treatment for long time. It is a progressive disease.

    What tyope of achalasia your daughter has? Mine is type 2 which was diagnosed on June this year. I opted for Heller in July. I had to postpone the surgery due to personal problems and then changed my plans and decided to go for POEM. My insurance denied the pre-authorization so am scrambling to get things back on track. Having said all that, it takes time to get things done once you start the process. So I would advise to act soon. If she is not ready for POEM, what is she thinking then? Heller or dilation? She is too young to suffer from this horrible condition and I feel so sorry for her. Talk with surgeon/doctor about any repurcussions if she delays for long time. You need to keep records of everything like what you eat, when does she regurgigate, choking at night etc...etc....

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    • Posted

      Thanks for your advice Pratik. So you have been diagnosed for only 2 month? Did you suffer from the condition for longer than this until it actually get diagnosed, or did it just advanced so fast that you decided to go for op? Btw, my daughter has the Type2, same as you, which the doctors said is a better choice for POEM. Seems like both have pros and cons, plus one should decide besed on each individual situation. Hoping you could get your insurance problem solved and go with the one that you felt is right for you. Good luck🍀

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    • Posted

      The problem with this disease is it gets diagnosed late. In 2014, the barium swallow test report said  "suspicious of achalasia". But i didn't have anytrouble swallowing. I did have very rare occurences prioe to 2014 but it was so rare that everyone brushed it off. the subseuent endoscopy in 2014 showed everything was normal. So life went on. In september that year, a grape was stuck in my upper third of esophagus and minor stricture was observed during endoscopy. esophagus was dilated and again my endoscopist didn't raise a red flag since the grape wasnot stuck iat the lower sphincter junction. From december 2016, the problem started becoming very frequent. Then I was referred to a renowned endoscopist in Philadelphia where the manometry test in June confirmed achalasia. Yeah, it was very difficult to get appointment. Since June , I have been on very restricted diet and I have lost 10 lbs. Prior to being diagnosed, I used to try to push anything down. If it doesn't work, then i threwup and tried again. But after knowing what the problem is I stopped trying such thing. It is frustrating that POEM was denied. Hospital was trying to do POEM under different procedure code , one for Heller. I was concerned that insurance will later deny the payment as POEM was not approved. Although doctor office said everything is ok, I will get my POEM, i was still not convinced. I myself got involved with insurance and when my case was updated with the code for POEM, it got denied. I still don't understand how the hospital was going to perform POEM on me without insurance approvals. I guess these are some tricks that hospitals do. I still feel very uncomfortable with my post-surgery life which is going to be anything but normal. But such is the nature of this disease. I wish best of luck to you and to your daughter. Hope she gets the best treatment and donot suffer too much.

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    • Posted

      Pratik20, I was in your shoes the beginning og this year! I finally got the Heller with the fundoplication and am so thankful for it. The recuperation was not a picnic, but now I am able to eat anything I want! Just have to make sure I chew everything extremely well and wash it down with water. My surgeon was concerned that I would still have major problems because my esophagus was so dilated! Thankfully that is not the case! You should consider the Heller. Your esophagus will just get worse, the longer you wait!!!
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    • Posted

      Thanks Loretta for encouraging words. Can you please elaborate on the recuperation?

      How long you had to be on pain killers? My doctor said I can't drive till I am under pain medications. Unfortnate part for me is I need to look for a new job and this is messing up my job search. as soon as i recover, i need to start going for in-person interviews. May be I can do the phone interviews while I am recovering. Did you lose more weight during recovery? After the surgery, when did you start eating normally?

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    • Posted

      I was really scared to do the surgery! Arthroscopic surgery, I had five very small incisions above my belly button. No initial pain, probably because of all the pain meds I got during surgery! Stayed in hospital overnight. Was on pain meds during the night. Was given a prescription for hydrocodone when I left the hospital. When I got home I took one dose and didn't like the feeling. Made me feel worse, nauseous and dizzy! I decided to just take liquid Tylenol. Wasn't as strong, but what helped me tremendously, were ice packs on the incision areas! Ice packs were on me all the time! First 2 days were not too bad, but on the Third day I was questioning my decision to have the surgery, I was hurting so much. Fourth day was better, pain was less! First 10 days, I was on a liquid diet! Nutrition drinks helped a lot. Then I could do smoothies, creamy soups. I blended a lot of my foods. I did this for a month. Then I graduated to soft foods, like scrambled eggs, mashed potatoes and such. I gradually started introducing other foods. Whatever I eat now, I chew it up till its almost liquid, then swallow, followed by water. After 10 days, I started to feel normal, just couldn't eat what I wanted. Still had to take it easy, no golf for me! It's important that you get feeling better before you get a job. Fix yourself, then you can focus on your job search. Good luck! 

      I lost very little weight after surgery! 

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    • Posted

      Thanks Loretta for encouraging words. Seems like I will be having Heller on 18th. I don't wanna wait for POEM as there is no guarentee it would be approved. I would probably be asking more questions after the surgery to you or in this forum. Can you please give me examples of some food that you ate or drank until the normal eating was restored. Like first 2-3 days where I beleive you are recommended only liquid. Then after 3 days, soft food. If you could give me some examples of what I can consume to get enough nutrition, I would really appreciate. I forsee I will have more questions later as doctor always wont be available to answer these simple questions. I hope you wouldn't mind the questions.

      Thanks a lot

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    • Posted

      So happy you are finally getting the operation! You will be so glad you did! I know, maybe you won't at first, but in about 10 days you will be !! The first 10 days, I sustained myself on chicken broth, juices, like cranberry, apple. After your surgery, you will probably get some info on what drinks you can have! After the liquids I lived on smoothies, creamy soups! Your surgeon will be very helpful!!! I'll try to make myself remember more! 

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    • Posted

      Hi Loretta

      I had my surgery yesterday. I thought surgery would be the most difficult part. How wrong was I...

      Now I am experiencing what you meant. I had major scare today when the effect of my pain medication went suddenly. I am home now at my aunt's house. I am told see through liquid diets for 3 days. if i can tolerate that, then full liquid like smoothies, milk for next 3 days. Then 2nd week soft foods like mashed potatos, scrambled eggs.... I m not too optmistic if i can take those in 2nd week. If you could think of any recommendations to go through these 1st 2 weeks, please share.  few things that I found overwhelming was - not carry more than 10lbs for 3 months, soft diets up to 6 weeks. I guess I will concentrate on 1st 2 weeks. Any suggestion would be highly appreciated.

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    • Posted

      Great! Just be good with the instructions! Every day will get better! When you start your soft foods make sure you drink water after each bite! Ice packs on incisions helped me! Take it slow, keep an ice pack on you as often as you can!! God Bless you with a quick recovery! One day at a time!!
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    • Posted

      Did you have any signs of chest pain or heartburn during the initial days of recovery? today is day 5 and this morning when I woke up, i have some kind of pain /discomfort in chest area. Drank water. It kind of sibsided. But I could still feel it almost 3hrs after the initial experience. i just drank a cup of non-fat milk till now but the discomfort had started before i drank anything in the morning.
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