I have a seven yr old boy with this condition, I would l...

I too have a 7 yr old boy with achalasia. He is awaiting open surgery (Heller's myotomy) at Cardiff Hosp. Like you, I would love to contact other mothers in the same situation to share experiences.

[i:bac017d1bf]This message was automatically imported from the original Patient Experience[/i:bac017d1bf]

hi, although im not a mother with a child who has this condition, i did have it myself as a child and can still remember the trials and tribulations i faced trying to have a proper childhood and living with this condition.

i wont lie to you, i had a pretty grim childhood, the one thing your son has going for him, is that you have a correct diagnosis (whereas i didnt untill eighteen) so his school and school friends should be sympathic to his situation. i know i'll never forget being the first person in the dinner hall and still sitting in my place when the afternoon bell rang for lessons after only managing to eat a couple of mouthfuls of food, or trying to run to the toilet to be sick and not making it in time! or being so skinny the other kids took the micky out of me (i once went more than 2 years without showing my legs, even on the beach!) i couldnt go out to play or stay at friends houses either, as i got older the condition just got more and more embarrassing for me, what boy wants a girlfriend who cant eat or breath properly! (my achalasia had progressed so much, food was spilling into my lungs)!!

children can be very hardy though, and tend to take things in their stride especially young children, (my condition largly stared embarrassing me at secondry school), so try not to worry too much (i know its easier said than done!) like i said its a great thing your son has been correctly diagnosed so early and although the treatment is quite scarey, it is well worth doing whatever your surgeon recommends. in the meantime, try giving him a couple more pillows at night, it helps if you sleep propped up, and feeding him little and often with plenty of water to drink, no bread if you can help it as this tends to 'stick' and make sure everyone who he spends time with knows his situation, so if he runs into problems while eating with them, they wont force him to finish his meal or make a big deal of it, stressing him out over it wont do him any good. while he's having an attack, try to keep him as still as possible, with me if i moved around it seemed to feel worse, also if he's not eating well vitamin supplements are good. most of all try to be patient and understanding with him, i could be quite horrible when i was hungry and couldnt manage to eat!

if you want to get in touch please do (just write a reply on my own experience, its somewhere on here)

things will get better for your son, i promise you, they have for me. having the operation was a turning point in my life

Stacy Brown

oh, and dont tell your son off if he burps alot, he probably cant help it!!

it sounds funny but i think burping is kind of like a side-effect of achalasia, as when my food has trouble going down, i burp loads and for ages after i eat! i dont make myself burp, they just force their way out!!!

i think its because as the food tries to get pushed down it pushes any air out.

it can be embarrassing at times (obviously!!) but when you burp it can feel like it helps, as it feels like the food is shifting down your foodpipe, which in turn makes you feel abit better (well it does for me anyway)

im not saying one big burp makes your foodpipe clear, but a few burps can make you feel abit more comfortable!

Stacy B

I recently been diagnosed with this condition after years of intermittent tests for pains in my chest. Eventually it only relieved after an expellation of wind. I no longer care who sees me burbing, just as long as the pain goes. I found that cialis has helped considerably, however I'm hoping someone out there will find a cure before I need an operation.

hello

my 15yr old daughter has achalasia and had the hellers and fundoplication op last july. she is now like she was before the symptoms started and eating anything and everything. she now only complains occasionally about reflux and the odd pains. her weight is going back on too which is a relief. she is now back to her teenage tantrums which is annoying but also a blessing as it shows she is back to her old self. the operation was well worth it and she was out of hospital 2 days after the op. she was also eating 3 proper meals a day and that was with a pudding after lunch and dinner. sloppy at first but they let her have sausage the day she left hospital. she has never looked back and gets excited about putting weight on. she went down to 5stone 5 lbs just before the op and she is now 7stone 4lb.

I am a 14 year old & suffer with Achalasia.

I find jumping up and down when I suffer from it really helps my food go down! I told my doctor this and he told me that yes this could work as it had something to do with gravity.

My eight year old son has suffered from achalasia and after bronchitis and dramatic weight loss had the Hellers Operation at the begining of February 2008. He has now regained all his weight and is much much better. He does still suffer from reflux especially around breakfast time and we find that if he is anxious this can make him reject food. Any tips on how to improve breakfast times would be useful.

Eating sloppy food for 6 weeks really helped before we tried the \"harder\" food and it was definitely a case of little and often until his stomach expanded.

This website has really helped us - not much information on food is supplied by the medical profession!

I have been diagnosed with this and am due to have Hellers myotomy in a few weeks. Can I ask people who have have/had achalasia themselves what can I do to get food to go down in the meantime. Have had the condition for almost a year, and in the last few days (probably due to stress and tiredness) I am finding it nearly impossible to get any food down and then to stay down. I am gone into 3rd day of not being able to get food down - even though I am only trying to eat what I have managed to get to go down, and how, for the last 6 months.

I lived on soups, smoothies anything you could blend into a liquid really. I think I am one of the lucky ones, I was still able to eat chocolate and surprisingly I was about to eat crips (not a practical diet - I know), but that is what I lived on for a couple of years or so. Everything else seem to get stuck.

I had my Hellors 6 weeks ago and today I saw my Consultant and he gave me the all clear. One the way home we had fish and chips to celebrate and I am so pleased to say that it went down lovely. That has something I have not been able to do for about 4 1/2 years :@)

All the best to you all. xx

Hello parents of kids with achalasia, just wondering if this site still active. I read your posts and are all very helpful, thanks and if any one of you still check this forum, I'd like to talk to you. Take care.