My daughter was just told she has achalasia? She is 14 and I am worried. Anyone have word of encourgment?
Hi there,
I can understand you being very worried about your daugther. It’s quite a thing to hear about the diagnosis being achalasia! I am a 33 y. old mother of 2 boys and my achalasia started in my teens.
I have had to undergo several achalasia treatments and I am about to go in for my 3rd myotomy (that will be in 2008 probably). Having to undergo a 3rd surgery is very rare. The stories you mostly read on the different boards are not the success stories, as people in need of help mostly are the newly diagnosed ones and the people who keep having problems (as in my case). Despite my achalasia and despite my surgeries I grew up to a happy, healthy woman! I have got two healthy boys (8 and 5 y. old), I have a great job (2 days/wk) and a very normal life with achalasia ups and downs.
Achalasia is an ugly, rotten disease to have. Yet, it doesn’t have to keep one from living his life!
The one thing you really really need to do, is to find your daughter the very very very best achalasia specialist/doctor you can. Her doctor’s experience with achalasia is of the biggest importance and can make the difference between a successfull and an unsuccessfull surgery; the difference between a life of “normal” swallowing or not; the difference between a life full of spasms/pains or not.
How did you learn about your daugther’s achalasia and who is currently treating her (do you know about his experience with achalasia?). What treatments have been suggested to your daugther, or has she already gotten a treatment?
Wishing you and your daughter lots of strength!
Isabella
I have communicated with mothers of children that have achalasia and they can do very well after surgery. You want to get the best surgeon you can find though. Achalasia is rare. In general there are only about 1 new case per 100,000 people per year. In children it is rarer. There is only about 1 new case per 1,000,000 children per year, maybe less. This means that your local GI who is an expert in many things may never have had an achalasia patient before. And the local surgeons may never have done the surgery before. That won’t stop them from wanting to try it though. The chance that they have had a child with it is even less. You want someone that has done many of these surgeries for achalasia and has done some on children.
Be prepared to travel to get the best. Good luck.
notan
Hello- I AM A MOTHER OF A CHILD WITH ACHALASIA.MY SON IS 14 AND WAS DIAGNOSED 2 YEARS AGO. I WILL JUST OFFER YOU MY E MAIL ADDRESS AND ANY QUESTIONS YOU WOULD LIKE TO ASK PLEASE DO AND I WILL ANSWER. TCOOPER1973@COX.NET
MY SON HAS UNDERGONE 2 OPERATIONS FOR ACHALASIA.FIRST ONE WAS A FAILURE CAUSE WE USED A DR WHO WAS NOT A SPECIALIST AS HE SAID.THAT WAS DONE LAPRO.
SECOND HAD TO BE FIXED FROM A DR WHO WAS A SPECIALIST AND IS ONE OF THE BEST IN THE NATION! HE IS LOCATED AT CLEVELAND CLINIC OHIO.THAT WAS DONE OPEN AND REQUIRED 8 DAYS IN ICU(ALL BECAUSE OTHER DR WAS NOT A SPECIALIST!)
I KNOW OF MANY OTHER ACHALASIA PATIENTS WHO HAVE USED THIS SURGEON AND ARE DOING GREAT! THE MAIN CONCERN WITH THIS DISEASE IS A DR WHO IS A SPECIALIST AND HAS DONE MANY MANY OF THESE OPERATIONS SO YOU DONT HAVE TO GO THROUGH OTHER OPERATIONS AS MY SON DID.
PLEASE SEND ME A EMAIL AND IF YOU WOULD LIKE WE CAN TALK BY PHONE.OR YOU CAN RESPOND THROUGH HERE.
THIS IS A VRY SCARY ORDEAL I KNOW BUT IF YOU GET WITH THE RIGHT DR AND YOUR DR GETS THINGS FIXED SHE WILL LIVE A NORMAL LIFE AGAIN AND I KNOW THINGS DONT SEEM LIKE THAT NOW.
MY SON HAS GAINED OVER 35 POUNDS SINCE OCT AND CAN EAT EVERYTHING.THINGS WILL GET BETTER FOR HER BUT YOU HAVE TO GET HER WITH A SPECIALIST!
WHERE ARE YOU LOCATED?
LOOK FOWARD TO HEARING FROM YOU.
TONIA IN VIRGINIA
Hey Mom - you are understandably worried. I hope I can offer some encouragement. I am a 39 year old mother of 2 girls, almost 5 and 2.
I started having problems with Achalasia at the age of 12 and got diagnosed at age 15. I have 2 dilations over the next 4 years and then had a Heller Myotomy at age 20 in 1989. I had 2 post-op dilations but nothing since. My Achalasia is not ‘cured’ but it is manageable.
There are times it’s going to suck!! and I really feel for the kids because it’s so hard to be a teenager without being ‘wierd’ at the same time with some disease that I can guarantee none of their friends have even heard of!!
BUT She can go on to lead a very normal life with school, work, marriage, kids, whatever! From the outside, if I didn’t tell you I had A - you’d never know.
I agree with Notan - and by the way, for all the technical stuff - the man’s a genius - get to the best doctor you can. Let us know where you live and we may be able to refer you to an experienced doctor.
I might also recommend that although this is a great site, it is still somewhat small. There is an achalasia group on Yahoo that has almost 1500 members. All ages, genders - from all over the states and several countries. It’s a great support group and a wealth of information.
good luck to you and if you’d like to contact me directly my email is mcnairmichelle (at) aol.com
by the way - what’s your name, your daughters name and where are you from?
Hi Worried Mom
my daughter was diagnosed when she was 8 and had a myotomy- they didn't mess around with any balloon dilations or anything- she had it done laporoscopically at Children's Mem Hosp in IL-in fact she was the first kid there to have it done lapro as opposed to an open procedure-they often do a fundoplication (put plainly they kind of wrap part of the stomach around the gastroesophageal junction to prevent GERD)with a myotomy but my daughter didn't end up having that done-it was a little rough post op-she was on morphine the first couple of days but after being taken off was a trooper and didn't really need additional pain meds
... she had some spasms for the first year post op but other than that she is pretty much a normal kid- she has had no reflux issues and tends to stay away from foods and sodas that would aggrevate any reflux condition-she gained like 10 lbs immediately when she was back on solids which is just an indication of how little food she was actually getting down before.
her achalasia came on out of the blue and progressed pretty quickly- in the end she was aspirating at night which was scary- she can pretty much eat and drink what she wants- she stays away from sodas and some times has trouble with dry stuff like breads, rice, plain pastas-which she really just has to make sure she chews thoroughly
-she is now going on 11 yrs of age - not to say she won't have issues in the future but she has been doing really well and we were really happy with her surgeon and doctors-my advice is learn as much as you can about the disease and if you plan surgery make sure your surgeon has done the procedure before- my surgeon had done the porcedure and she is a pediatric surgeon but had never done it laporoscopically before so the head of the laporoscopic dept assisted her. best of luck to you and your family -email me with any questions- be happy to help
Hello,
I was diagnosed with achalasia when I was 5 years old. I remember that everything I ate or drink would come right back up. I would describe it as the food getting “stuck” and I still say that to this day. After my body got used to it food and drinks would stay in my esophagus longer before coming back up. Even though all my food went through a food processor nothing could stay down. I could drink ensure but I could only drink a few small sips every few minutes or it would come back up too. I went through dozens of barium swallow procedures and almost a dozen balloon dilation procedures. Balloon dilation would help for a few days but I already had to get all my food liquefied in a food processor so all I know is that it let liquid down for a few days.
It wasn’t after I had a Heller’s myotomy done that it improved. After the surgery I had to stay hospitalized for 2 months because I was severely malnourished and high-risk because of that. It wasn’t until six months after I was released from the hospital that I could eat actual normal food. I was so excited to be able to eat steak and burgers again. They told me that everything would go back to normal and for the most part it did. Food will still get stuck from time to time and I always have to have a drink when I eat regardless of what I’m eating but that is absolutely acceptable.
What they did not warn me about was the GERD. It is not typical reflux because it’s not an overproduction of acid but the lack of your esophagus keeping it down. This reflux you not only feel in your chest and your throat but your face and your back as well. I experienced this the first time as a surprise and I thought I was going to die. I was rushed to the emergency room and then an ambulance rushed me to the specialty hospital where I had my procedure. Some medications will stop the frequency of it but when the reflux comes it is bad. Those same medications also complicate the digestion process a little bit. Over time I got used to the constant pain associated with the GERD because it is constant but when it is severe it is very hard to do anything.
My procedure was done 30 years ago when I was six. They may have more advanced procedures and they may warn people about the acid reflux now. All I know is that I wasn’t warned about it so I figured I would tell you.
Though food still gets “stuck” I eat what I want and for the most part when I want. Your daughter will be fine but it may be a long road for you and a longer Road for her.