Update on my son (8-yo) Aidan

June 27, 2012

Hi, all--

I appreciate the insight I get from reading these posts and I'm grateful for a

group where people can share their experiences, trials, and tribulations.

My 8-yo son Aidan was officially diagnosed with achalasia in March. We

identified his dysphagia around Christmas and he had a very minor dilitation

done with his endoscopy in January. This didn't do a whole lot for him, though

he's managed well with a modified diet and behavioral adaptations.

Last week, we went to Boston Children' Hospital to see Dr. Manfredi, who is

their surgery specialist (Dr. Nurko is well known as the achalasia expert there

but he's difficult to get an appointment with and Dr. Manfredi seems to be

taking the new clinical cases), thinking that they would likely recommend an HM.

Instead, he recommended a dilitation and said that he usually asks for at least

two shots (if not three) at it because it can potentially give years of relief

from symptoms in order to delay an eventual HM. He added that the earlier

dilitation didn't even count since it was so incredibly minor (10 mm) and wasn't

using the correct equipment for a proper dilitation. He also mentioned that,

depending on the feel of the procedure and how well the first one holds, he can

increase the dilation on a subsequent procedure to make it work better.

My son is happy he won't have to have surgery and extremely happy that he will

be sedated, as the manometry was pure torture.

We had an interesting discussion about surgery and he was on the fence about

POEM, saying that there wasn't enough evidence for him to feel confident about

it, so he is very intrigued but not completely swayed. In Boston, they do

transthoracic surgery because he said it doesn't mandate a fundoplication and

they have good success in fine-tuning the results. I would love to avoid the

fundo if possible.

Our 2nd GI in NY recommended we go to Boston for a second opinion, and I know

that medicine is a volume business. Boston attracts complicated GI patients from

the region and sees more pediatric achalasia than anybody else around, but they

still only diagnose about 5 cases a year!

There aren't a lot of pediatric cases in this group, so I thought it would be

worthwhile to share what we gleaned from the consult as well as his

recommendation on moving forward.

Cheers,

Tamiko m/o Aidan

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