Malo and research and suggestions.

[Guest guest]

In a child who has not yet reached puberty, the internal parts are very very

delicate. While I know you love your specialist, you may have to do the hard

thing and get another opinion.  my concern is that he already has been invaded

so many times. What is the condition of the Esophagus.  I am more concerned

about the overstretching of the esophagus so early that it will set him up for

having to have an esophogectomy so early on in life.  My thoughts are that he

needs to be seen for a second opinion by some one who is very experience and in

a more long term way.. the specialist who has been with his patients for the

long road..  

With that I would like to suggest to you that perhaps a second opinion may be

just the thing it will help ease your heart and mind that the right thing  is

being done.

It is most often the school of thought- consensus- that children should not have

a dilation. This is what piques my interest and the recommending of a second

opinion. 

Remember what ever is done.. is just that ... done... take your time and read

and research, google scholar is good for pediatric achalasia, but it is

EXTREMELY RARE! 

If you want some referrals for Peds Achalasia, let us know.. I will find some

one of expertise!

look  who is writing the articles and get their emails.

These specialist will very often respond to emails and phone calls!!! They can

help you by the history and your endoscopy!

Some of the key words you can use are:

" pediatric "   dysphagia, motility disorders, swallowing disorders, myotomy,

fundoplication, esophageal atresia,

From: Malo <grneyegrrl@...>

Subject: Re: child with recurring symptoms after Heller Myotomy

achalasia

Date: Tuesday, March 8, 2011, 10:45 AM

 

Thanks! I have to say it's a relief to find parents to talk to about this.

I'm actually in DC. Our GI doc's name is Ali Bader. He's amazing! My son has

also seen a Dr. Kerzner who is equally good. They are both out of Children's

Hospital here in DC. It's such a great place. From what I've gathered, these 2

are the experts in our area. The surgeon we had is also the only pediatric

surgeon in the area (that I'm aware of) that performs this procedure. There are

others, but not ones that concentrate specifically on peds.

Originally, they tried the dilations as a minimally invasive option. The first 2

did nothing. The second two lasted about a week. They were afraid to use a

bigger balloon so we opted for the myotomy since he had no relief of symptoms.

They did do the myotomy with the dor fundoplication. Things went fairly well

(for him- I was a mess!), but a few months later, same thing. Turns out part of

the flap was bulging in so the did a laparoscopic procedure to fix. All has been

well until the past few months, with things progressively getting worse.

We are going to an appointment on the 17th, so I am hoping for some answers. I

am definitely an aggressive parent when it comes to this issue! I'm hoping at

all costs to avoid another surgical procedure, but he had JUST started putting

weight back on recently, and now we're going back down hill. I don't want him to

be in the same place he was before. And I agree with you, the risk of another

dilation isn't worth the results. I'm not willing to risk a perforation.

I don't know anyone in my area who's been through this, but I'm hoping to find

someone through here!

But, just knowing other parents have been through this and can give me advice

and support is a load off my shoulders. I will let you know what they say.

Thanks so much!

>

> From: Malo <grneyegrrl@...>

> Subject: Re: child with recurring symptoms after Heller Myotomy

> achalasia

> Date: Tuesday, March 8, 2011, 8:12 AM

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> He's 11 now. We live in DC. The doc we have is amazing. He's been

treated at Children's Hospital for the length of this. The dilations have never

worked in the past. He had a lot of scar tissue that they were never able to

break. My fear of course is another myotomy. I really just want him to not have

to deal with this anymore. It breaks my heart to see him like that, and it's

unbearable to see him after surgery. It's one of those things that as a Mom you

can't make better, you know?

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> > From: " Malo " <grneyegrrl@>

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> > Sent: Tuesday, March 08, 2011 10:43 AM

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> > <achalasia >

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> > Subject: child with recurring symptoms after Heller Myotomy

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> > > Hello all-

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> > > New to the group here and hoping to find some info/support, really

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> > > anything at this point. Can't find a lot of info on the web.

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> > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

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> > > pounds when we found out. We've gone through feeding tubes, supplements,

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> > > all of that. He had 4 dilations before they determined those weren't

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> > > working. He finally had a myotomy about 2 years ago.

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> > > He's been doing GREAT until recently. I've noticed the same things: not

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> > > eating a lot, frequent trips to the bathroom during meals, rushing for a

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> > > drink while eating.

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> > > We go back to the doctor in a week. My question is what's the next option?

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> > > I read something about an open Heller's Myotomy, which terrifies me.

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> > > Has anyone else been through this? Any advice would be greatly

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> > > appreciated!

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