Re: your opinions are requested

July 11, 2002

Branchial pits might best be described as looking like acne scars or chicken pox

scars. They might appear on the ears, around the ears or on the neck. A

Branchial Fistula looks more like a channel of abnormal tissue along the neck.

Sheri

July 11, 2002

Branchial pits might best be described as looking like acne scars or chicken pox

scars. They might appear on the ears, around the ears or on the neck. A

Branchial Fistula looks more like a channel of abnormal tissue along the neck.

Sheri

July 11, 2002

In a message dated 7/11/02 4:36:01 PM Central Daylight Time,

julie_coakley99@... writes:

<< 1. I've been advised that in addition to doing an ultrasound, a blood

test should be performed, since some cellular kidney issues only show

up on urine/blood tests, and then yearly urine tests should be

performed to look for protein. If there is a pattern of UTIs, then

there should be follow up with more invasive testsâ€”VCUG and IVP to do

radioactive imaging of how the kidneys are actually processing the

waste.

The ENT did not support these tests, but said I could ask my

pediatrician.

>>

,

I could not pass up on responding to this. It makes me so mad when these

ENT's and Pediatricians pretend to have half a brain and know what they're

doing. You asked her all the right questions and she still acted stupid. If

they would pull their acts together and have more training then maybe some of

these kids wouldn't have to go through some of the trauma that they've

endured.

My daughter's ENT and Pediatrician never gave us the proper guidance, They

never suggested to us to bring our daughter to a specialist. " She has a

deformity " " We'll do plastic surgery on her when she is five " Is what we were

told.

You have to have an Ultrasound done on Miles! My Six year old(Five at the

time) daughter Riley had a Kidney removed last year because it was

non-functioning. After getting several UTI's, I finally decided that she

needed to see a Urologist. And according to him her Kidney had probably

always been this way. Which explains why she had so many problems in her

first five years of life. When the Urologist removed her right Kidney he also

removed 80% of her Ureter. Now one year and five UTI's later,he has to go

back in and remove the other 20% of her Ureter after Summer is over. This

could have all been taken care of before she was old enough to remember the

trauma.

4. I have read that an echocardiogram should be performed as heart

irregularities can be linked to microtia.

She did not feel this was necessary.

I can't believe what a complete idiot she is. The percentage may not be high

for heart or Kidney irregularities, But for her to say she didn't feel it was

necessary to have the echocardiogram done is completely irresponsible and

foolish. What if(God forbid) Miles happened to be one of those low

percentages?

My God this ENT is a complete fool!

Miles needs to have the echocardiogram done. It's very easy and doesn't

hurt. And that would be one less thing you have to think and worry about when

the results comes back normal.

and what are your thoughts on

visiting a craniofacial clinic and are there any such clinics in

Colorado?

She said a craniofacial team was only needed if he needs craniofacial

work. He doesn't need it at this time and if it becomes more

noticeable as he gets older he will probably need a plastic surgeon

for a cheek implant or a mandibular distraction if his jaw grows

asymmetrically. Since he doesn't have difficulty breathing, he

doesn't need this type of evaluation at this time.

I highly dissagree with this statement too. The Craniofacial team is not just

there for craniofacial work. They order all the right tests to put your mind

at ease.

We never even heard of a craniofacial team until our Urologist reccommended

one to us. And because of Riley seeing the craniofacial team we learned alot

about her condition. And because of the tests they ordered and specialists

we've seen through them. We found out that Riley has ribs fused together and

some neck bones fused together. We discovered that she is at high risk for

spinal injuries. If we hadn't found that out, she would still be in

Gymnastics taking a chance and we wouldn't even realize it.

I highly reccommend seeing a craniofacial team. You have to realize that

your ENT is not the sharpest knife in the drawer. I don't know what she is

basing her lack of reccommendations on, But I can tell you this, She is a

Malpractice suit waiting to happen. She sounds very indifferent and uncaring

to me. Get a new ENT now! Don't ask for her advice anymore because she

obviously does not care about you or Miles and that is ashame.

I don't mean to sound so bitter, But sometimes Doctors make me sick!

Thank God we finally found a wonderful group of doctors that actually care

about Riley and her well being. Unfortunately there are so many doctors out

there that are arrogant and self centered and it sounds to me that you have

one of them. We look to our doctors for guidance and trust them with our

children, But we have to first and foremost trust in our own instincts, As

parents we have to protect our children from the ones that only have $$$$$ in

their eyes.

Thanks for listening to me.

Lyn (Mom to Riley 6 Unilateral Atresia/Microtia)

July 12, 2002

> You have to have an Ultrasound done on Miles!

Lyn,

I've got to defend her just a little bit--she already had us do an

ultrasound on Miles an--after I asked--did an xray for his cervical

spine. But she doesn't want to do any of the cellular kidney tests,

echocardiogram, etc. So I agree with you (and all else that have

responded): I am going to look for another ENT.

I just don't understand the attitude of not checking to MAKE SURE

everything is okay!

Thanks for your story and advice!

July 12, 2002

In a message dated 7/12/02 4:10:12 PM Central Daylight Time,

julie_coakley99@... writes:

<< Lyn,

I've got to defend her just a little bit--she already had us do an

ultrasound on Miles an--after I asked--did an xray for his cervical

spine. But she doesn't want to do any of the cellular kidney tests,

echocardiogram, etc. So I agree with you (and all else that have

responded): I am going to look for another ENT.

I just don't understand the attitude of not checking to MAKE SURE

everything is okay!

Thanks for your story and advice!

>>

,

Sorry if I was a bit harsh pertaining to your ENT. I've had a bad few

weeks with doctors and then I read your post and I just got so upset. Bells

were going off in my head and I felt that your ENT was wrong, But I should

have been less harsh with my comments. Once again I apologize and I hope you

don't think that I am a horrible person. I just take things way too personal.

Take care,

Lyn

July 12, 2002

In a message dated 7/12/02 4:10:12 PM Central Daylight Time,

julie_coakley99@... writes:

<< Lyn,

I've got to defend her just a little bit--she already had us do an

ultrasound on Miles an--after I asked--did an xray for his cervical

spine. But she doesn't want to do any of the cellular kidney tests,

echocardiogram, etc. So I agree with you (and all else that have

responded): I am going to look for another ENT.

I just don't understand the attitude of not checking to MAKE SURE

everything is okay!

Thanks for your story and advice!

>>

,

Sorry if I was a bit harsh pertaining to your ENT. I've had a bad few

weeks with doctors and then I read your post and I just got so upset. Bells

were going off in my head and I felt that your ENT was wrong, But I should

have been less harsh with my comments. Once again I apologize and I hope you

don't think that I am a horrible person. I just take things way too personal.

Take care,

Lyn

July 13, 2002

But I can tell you this, She is a