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.🌻🍀
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 .
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.
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 İmmune- 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.
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!
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....
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.
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 😊
Good it worked for you. Thanks for the tips and encouragement. I wrote down the Scandi shakes on my list.🌻
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.
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 decıde 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🍀
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.
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...
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
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 !
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.
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
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
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🌻
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🍀