Searching for answers for Toddler

Achalasia
#1

Hi, I’m glad to find this site and am searching for answers.

My 22-month old appears to have chest-related pain almost all the time. The only thing that seems to relieve it is drinking formula, which seems to calm things down for about 30 minutes. We’ve seen three different GI docs. . .he’s been through 5 scopes and two PH-impendence probes. So, we’ve ruled out reflux and many other GI issues.

I once asked our GI doc if Bryce might have esophagual spasms or achalasia. This was his answer, “Absolutely, whether we call them spasms or functional - sensation issues - the fact is with retrograde distention of the esophagus he responds by feeling pain.”

However, this GI doc has now retired and isn’t treating my son any longer. I think we need to follow up on what he said but I’m not even sure how to do that or what “retrograde distention of the esophagus” means.

Does anyone have any advice?? I really want to provide my child some relief. He’s been in this pain since he was born and it really interrupts his sleep and daily life.

Thanks, Lisa

#2

Hello, Lisa.

When doctors force an organ to dilate by injecting a fluid into it, it is called induced retrograde distention. I think, but may be wrong, that the idea is that such distention is contrary to a normal state. The literal meaning of retrograde is backward which in a sense could be contrary. In tests of subjects where they inflate a balloon in the esophagi of the subjects, the subjects feel a pain like heartburn. I doubt any such test was done on Bryce.

In achalasia, because of nerve damage, a patient may not feel what a normal subject feels. So there can be some “sensation issues.” However, these often mean we don’t feel pain that others would, such as from acid reflux. Some patients can feel it, but other can have bad acid reflux and not have heartburn. It is also possible that some of the pain we do feel should not be felt as pain but is some other simulation that because of “sensation issues” we feel pain and may call them spasms when they may not always be true spasms.

I don’t know what to make of the doctor’s statement beyond that. You would have to ask him. It doesn’t seem like there would be distention causing pain that would feel better by drinking formula which you would think would add to the distention. Perhaps he was indicating that distention could cause spasms, and with or with out spasms the sensation issues could cause pain.

If it could be spasms, I think the doctor to test for it would be one who has an interest, or specialty, in esophageal motility disorders.

Does that help?

notan

#3

Hello too, please value Notan’s response. He is quite knowledgeable. I am the mom of an Achalasian teenager. You do not indicate where you are located, but it would be imperative for you find another GI that you can trust and have a relationship with. I can be found mostly on the Yahoo group… achalasia feel free to email me.

Carolyn
mom to Cameron
in No. Ca
wooleeacre@yahoo.com