6yearold son with achalasia, help!

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Our son has recently been diagnosed with achalasia. Last thursday he has had his second dilatation because the effect of the first dilatation only lasted for one day. He uses a nasogastric tube, because the only thing now he can keep inside is custard..

As parents we are sad because of the impact it's having on him now and we fear for the impact on his future. What can we expect because of his age, so young! Will more dilatations help him, surgery seems so drastic... And he's still growing..

I apologize for my writing, I'm Dutch and couldn't find what I was looking for on Dutch websites. 

I hope there is someone here who has experience with young achalasia patients, how to deal with it all.... 

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11 Replies

  • Posted

    Hi , firstly really se your son has this , I have struggled as an adult but cant imagine how bad it is for him so young . I had a myotomy 2 weeks ago and it has changed my life . I would recommend you go ont facebook and apply to join group called achalasia . There are many people on there with years of experience and they are very supportive . There are other parents of young children with achalasia . They will be able to help . There is also then a group for young people with the condition . They will put you in touch . It may feel like it but you are not alone . There is lots of support and advice . You can help your son through this xxxx good luck , feel free to contact me
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  • Posted

    Hi there, I read your post and wanted to offer support for your sons situation. My own son was diagnosed with achalasia at 7, 2 years after he started to eject his food during and after eating. He is treated at Addenbrookes hospital and is now 9. We have been through the heller myotomy in 2013 then in 2015 a dilatation. The myotomy relieved symptoms for a few weeks, but like your son, the dilatation effects lasted a day. We now face either of those again. We are also being advised of future treatment if this doesn't work. I am hopeful that this time will be successful. 

    I hope your son learns to manage his condition so it affects him the least ways possible and is able to expand his food options....it's tricky getting a child to stick to any food limitations, as well as encouraging them to eat things that they become fearful of if it may cause sickness.

    we are now prescribed build up milkshakes as my son, despite eating constantly, has put on no weight in a year. I would suggest you look at calorie intake  to ensure future growth and nutrition. I'm sure as your son grows older, he will become more confident in trying new things with more consistency.

    I feel your frustration as it's not want you want for your child, nor is any cure easy and the future is unknown. It's all quite rare in small people. Good luck and I hope that things get easier for your son.

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    • Posted

      Thanks for responding chellybean. It's nice to relate to someone, but I wish it wasn't necessary for everyone here, you know... 

      May I ask why your son got a heller myotomy before they tried dilatation?And after the myotomy, did the eating went back to 'normal'? Or did he still eject everything he ate? 

      And the milkshakes? I've contacted a dietician, is that the way to go?

      How is your son dealing with all of this? Does he talk a lot about it? 

      I'm sorry for so many questions. The frustration makes me angry and desperate.. So I'm trying to gather as much as info and experiences as I can.. 

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    • Posted

      No problem, it's good for me to gather as much advice and information that I can too. They are so young, and while they appear so able and mobile to deal with it, I fear it's worse as this is where the growth is so important.

      im not sure why the heller first, to be honest. I can only presume they felt it would be more likely to be successful first time around and lessen likelihood of need for further treatment. His sphincter only opens a couple of millimetres rather than the normal centimetre we should expect.

      He ate normally for about 3 weeks and no vomiting at all, then all of a sudden, we were back to running off to the loo during all meals. Fortunately, he doesn't get much pain or reflux (unless lots of bread or popcorn or jelly sweets) but his food and fluid sits in the oesophagus and this has made it saggy and stretched.

      After the dilatation the effects lasted literally a day. He was heartbroken as he is worried how it will affect his footballing career! He is raspy, coughs a lot and has a bin in bed at night as he needs to bring up food and fluid at night. He sleeps sitting up on pillows.

      the shakes are new. More to get calories inside of him easily so I'll keep you updated. Our concern is that he isn't gaining weight as he should so we are trying to give him as much ice cream as possible! He's loving it....not sure his dentist is though.

      ultimately, he handles it brilliantly day to day and is so brave but does get embarrassed in front of his friends. We just adapt and ensure we have sick bags or a loo nearby. He tells us and is open, it's not his fault, but as you say, it's incredibly frustrating as so little is known about it and why it happens.

      is your son still eating as well as nasal feeding? How is he coping? Is he sick the same way or have trouble eating and swallowing? My son eats the whole time......it costs a fortune to really, flush it down the loo!

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    • Posted

      Brave kids we have smile

      When I read back your first response; symptoms of achalasia with your son started when he was 5? And it took two years to diagnose?

      I wonder if our sons even know how it's suppost to feel like when you're eating.. Maybe it was never feeling like it should in the first place.

      At times my kid is embarrased too, just like your son. In the classroom they have desks with drawers. So he has a tiny box in his drawer so he can eject his food as secretly as possible if he needs to. Adapting is the key word indeed ;-)

      Today for breakfeast he could eat bread, without crust and with lots of drinking. Then he went to school. Around 10 o'clock his classmates eat fruit, and he ate a little custard/cream. At lunch he ate a little bread again and after school I found out he hasn't been drinking at lunch.. So I gave him something to drink with icecubes, he asks for icecubes because he says it feels nice (and water ice too by the way). He ejected some of it but I think a part of it went down because he told me it felt different. Later on he tried a biscuit but it came out. After that he didn't feel like eating anymore until he went to sleep, skipping dinner.

      Dinner/hot meals come out anywee, so that's why we feel we can't stop the nose feeding. As you say, he is growing up. The nosefeeding at this moment is kind of a replacement for dinner I guess.. And I feel like he doesn't have a good appetite, but I don't know what's 'normal' in his situation. Anywee, nose feeding is not ideal, also because he feels like people look at him..   that's why I was so curious about the milkshakes you mentioned. I just don't want to go back to where we were...  he gained weight now.. the coughing is gone and he sleeps so well.. Does the couqhing effect the sleeping of your son, or are the pillows sufficient enough to get him through the night?

      Do you already know what your next step is going to be, or at least what your options are? And did they mention something about effect of scar tissue? 

      questions, questions, questions... the more I read, the more questions I have I guess..

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    • Posted

      I know, there are so many what ifs and maybes. I note on here that many people have the heller or dilatation and symptoms are at least remedied for 10 years or so. Unfortunately, no such luck for us as yet.

      your sons school seem to be on top of things, at least he can be discrete with his vomiting. Kids can be cruel but we have been fortunate in that none of the class have picked up on it or ridicule him at all. I hope that's the case for your son too.

      to be honest, when the sickness first started I started to think it was psychological, he just started school, his dad and I parted, I met someone new etc. then we concentrated on a gluten free diet in case it was affecting him and thought about food intolerances. Persistence then to get the swallow and it was easy to see.

      the milkshakes are high in calories 300 in a small carton. Aimed to get calories into him mainly as he hasn't gained weight in over a year. I wish I could be more helpful or positive, but at this minute the future is uncertain. The last consultation has suggested they may try the heller again but via more invasive surgery, not keyhole. Then if unsuccessful, we consider a PEG feed. I'm nervous for that as he is so scared of that prospect. What if it's not temporary , how will he manage , how will I reinsert a tube! Needless to say, he is keen to drink the milkshakes to put on weight and avoid it. I wonder if a nasal tube would be better for that short term fix? May be different methods in different countries? Have they suggested PEG to your son?

      i guess that it's important your son gains weight.....have they said if they will remove it once he hits target weight? Also, he does need to keep his swallow up. Great he is not coughing as that's quite disturbing isn't it. My son coughs a lot, fortunately no aspiration so far.....I worry for the future. He just sicks into his bin in bed then gets rid of a bag full of fluid really each morning. Not very attractive. 

      Like you, the more I read, the worse I feel as they say it's progressive. I wish I could take it away from him and what if my course of action makes it worse long term........

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  • Posted

    Lets hope with his age he will get fixed its a horrible disease and alot of patience will be needed. Sadly dialations do not last long botox scares the gullet or sphincter so be careful and Heller myotomy dont always work but like I said age is on his side poor lad I wish him all the best.

    Its the most cruel disease specially xmas and birthdays meal times are a pain like I said be patient with him.

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