DD diagnosed wth Achalasia

[newtotheworld]

Hi

Came across your old post @SueW so tagging you if you see this thread and kindly reply please 🙏- also I hope your DD is doing great now.

Our 11 year old DD is today diagnosed with a Achalasia after going through hell (reflux like symptoms) for more than 2 years.

basically her oesophagus ballooned as the lower oesohageal sphincter closed tight and refused to let anything through. She is still eating but had to drink one or two pints of water during a meal.

Now the doctor suggested the recommended approach is to perform a keyhole surgery (laparoscopy) and is called Heller's myotomy - the muscle fibres in the ring of muscle that lets food into your stomach are cut.

What I understand is ther eis no cure for Achalasia and the op will only make it easier to swallow.

but I am getting worried now about the side effects of the muscle fibres being cut and no clue what other questions I need to ask before the op.

Any help or if you could share your experience it owuld be great 🙏

Thanks

Hi, I’ve had achalesia for around 18-20 years. I’m not sure I’m the best one to advise as I’ve not had a lot of joy with treatments. Over the years, I’ve had a balloon dilation, Heller Myotemy and Botox injections - I should be having my third lot of Botox next month. Each of these helped me for a while then gradually stopped. I understand the HM surgery helps most patients, I was unlucky. While the surgery didn’t have a lasting effect for me, it also didn’t have any side effects except I was sore for a while afterwards.

As it’s a rare condition, there isn’t a lot of information available. I’ve found searching for Acalasia groups on Facebook most helpful - there’s quite a few! I found then supportive and there’s some useful information. As far as I can tell, there’s a huge amount of difference between people’s experiences. Some are incredibly scary, with people unable to eat and being fed through a tube but many are not like that at all. As I said, I’ve lived with this for a couple of decades now. It’s not particularly nice but I am also not very good at asking for help - I leave it 5+ years between treatments or seeing anyone as I prefer to keep my head down and pretend there’s nothing wrong.

I’m sorry I don’t have much constructive advice to share but I’d really recommend joining the Facebook groups, and I hope all goes well for your daughter.

My adult daughter has Achalasia, she was diagnosed last year,and had the POEM procedure (Peroral Endoscopic Myotomy) where the lower oesophogeal sphincter muscle fibres are cut. After the op she spent a night in hospital and then had a week of liquid foods before going on to solids.
She is so much better than she was but still has the occasional spasm when eating. She is mindful with her diet as still struggles with some foods but knows what to avoid.
I mentioned this thread and she too advised the Facebook groups where there is one especially for children with Achalasia that is very informative and supportive.