Re: I may be asking a stupid question

[Guest guest]

In my opinion the place and the doctor you end up going to depends on how they

make you feel. Ask many questions, talk to the staff. See if you can talk to

other patients to see how they feel. You need to feel like you have a good

connection with the surgeon and that they are going to treat you well and that

you will not just be a number in there stats. In the end you have to feel good

about what is going to happen. Remember no surgery in the fix and will work for

everyone. Trying to get the best care for you also depends on you feeling like

you will and having a positive mind set.

in Georgia.

Sent from my iPhone

On Mar 26, 2012, at 6:03, " shareedanieal " <shareedanieal@...> wrote:

> 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?

>

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[Guest guest]

I live in BOS, and I'm a parent. Its well known that for most parents and

pediatricians Children's Hospital is always the first choice. They have great

experience treating children (their tagline: children are not just small adults

and should not be treated that way) and of course they are familiar with common

childhood ailments.

However, with an uncommon condition like A, what is better, experience with A or

experience with children ? I'm sure there is much debate.

BOS also has some top A specialists at Mass General, I don't know if our medical

community has a means for the hospitals/doctors to work together to get the best

of both worlds.

>

> 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]

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?

> >

>