Re: Re: I may be asking a stupid question

[Guest guest]

Hi Tamiko,

 

Thank you for the information on " pediatric achalasia centers, " which I was

previously unaware of. While it does not benefit me per se, it does others, and

that's a very good thing. Out of curiosity I entered the search words into

Google and came up with a fair number of links.

 

http://www.google.com/search?hl=en & source=hp & q=web & um=1 & ie=UTF-8 & sa=N & tab=iw#hl=\

en & sugexp=frgbld & gs_nf=1 & pq=web & cp=28 & gs_id=4 & xhr=t & q=pediatric+achalasia+center\

s & pf=p & safe=off & sclient=psy-ab & oq=pediatric+achalasia+centers+ & aq= & aqi= & aql= & gs_\

l= & pbx=1 & bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb & fp=6a38b958ac5aa915 & biw=1356 & bih=817

 

________________________________

From: Tamiko <stmoluag@...>

achalasia

Sent: Monday, March 26, 2012 10:55 AM

Subject: Re: I may be asking a stupid question

 

The answer is both. You need a facility that both understands children and has

experience with the particular disorder that your child has. Boston Children's

is, apparently, one of these.

We are using Cornell Weill as our primary GI right now, but as we figure out an

actual diagnosis, we are going to get second, third, fourth, etc. opinions from

every major center within striking distance. We actually like our physician in

NY but I an pretty sure they are not the place for surgery, and our doctor is

100% on board with helping us get other opinions and look at other institutions

for surgery.

Bluntly, I would not go to Mass General for a pediatric achalasia case, and Mass

General and Children's traditionally do NOT work well together. This is an issue

for kids I know who go to Mass General for proton radiation but have the need

for other specialists. They even handle the oncology part themselves through the

proton center (despite the fact that Dana Farber's peds clinic is close by),

though they require a physician's referral to do treatment in the first place.

I actually was hoping to get a list of the pediatric achalasia centers in the

northeast. I have heard Boston, CHOP, Cincinnati, Columbus, and I think 's

Hopkins. I would appreciate any clarification on this list, particularly any

place I'm not thinking of and those I don't need to bother with. I was concerned

about Columbus that none of the doctors mentions achalasia as a specialty on the

website, but we have an in there through my other son's oncology fellow, who is

now an attending there.

Personally, I would only ever consider getting a major procedure done at a peds

facility (I did achalasia-related testing for my older son at adult facilities

only because I was panicked to get him diagnosed and it was the quickest way to

get the swallow study/endoscopy/CT scan done). There are many reasons for this,

including the fact that adult facilities are quite callous in their treatment of

children. They may think they're being nice, but their standard practices are

not standard for peds (i.e. I.V. before sedation is totally unnecessary if there

isn't a blood draw before the procedure), so you just end up butting heads with

people.

Best of luck--

Tamiko m/o Aidan, age 8

suspected achalasia (manometry done 3/20)

> >

> > I recently looked into going to Boston Children's hospital well looked at

website to compare it to others that may be well suited for Taniea. I have to

admit I was quite impressed with what I saw but it wasn't much. It wasn't as if

they advertise we treat Achalasia and well too. I also have been looking into

Texas Children's Hospital and was not impressed with it. So hear is my question

how do you know where to go? I mean I ask questions like how many they have

donebut they always tell me a ridiculous number like 1000s. So how do you know?

> >

>

[Guest guest]

Thank you for your advice and input and Tamiko. I completely

understand how you feel about adult doctors for your child although my

experience with an adult GI and staff was quite the opposite. Although I

will never understand why a 10 and up young lady has to have a urine test

but they do that in the pediatric side as well. I guess I am back to second

guessing what I think i know is right. She is tired of all the spasms and

not eating well and is really quite ready for a more normal life. Especially

since she just turned 13.

She has recently been diagnosed with a tortuous esophagus and we are really

tired of dilations as they really seem to offer no help.

Giving up in Oklahoma

Re: I may be asking a stupid question

The answer is both. You need a facility that both understands children and

has experience with the particular disorder that your child has. Boston

Children's is, apparently, one of these.

We are using Cornell Weill as our primary GI right now, but as we figure out

an actual diagnosis, we are going to get second, third, fourth, etc.

opinions from every major center within striking distance. We actually like

our physician in NY but I an pretty sure they are not the place for surgery,

and our doctor is 100% on board with helping us get other opinions and look

at other institutions for surgery.

Bluntly, I would not go to Mass General for a pediatric achalasia case, and

Mass General and Children's traditionally do NOT work well together. This is

an issue for kids I know who go to Mass General for proton radiation but

have the need for other specialists. They even handle the oncology part

themselves through the proton center (despite the fact that Dana Farber's

peds clinic is close by), though they require a physician's referral to do

treatment in the first place.

I actually was hoping to get a list of the pediatric achalasia centers in

the northeast. I have heard Boston, CHOP, Cincinnati, Columbus, and I think

's Hopkins. I would appreciate any clarification on this list,

particularly any place I'm not thinking of and those I don't need to bother

with. I was concerned about Columbus that none of the doctors mentions

achalasia as a specialty on the we