Nothing Found, good or bad...

[Guest guest]

Hi everyone,

I've just caught up on reading the messages for the past few days.

I need another brain to store and process all this information!

Here's my news, good, bad and gripe-level,

Nothing found, the good news:

Our visit to the ENT went well. The CT scan and all the bloodwork

came back normal -- which is very good. The ENT said that the

bilirubin is a possible cause of the hearing loss, but he can't say

for sure. He also says that the treatment is the same, whether the

bilirubin is or isn't the cause.

Nothing found, the bad news:

Eamon's medical records (his entire medical record) are lost.

Or " Stuffed in a big box with a bunch of other medical records from

people who haven't been seen since the restructuring of this office. "

as his soon-to-be-former primary-care physician put it.

I don't want to cause anyone any trouble, but sometimes you have to

stand up for your rights and hold people accountable for what they

have or haven't done. It has been over a week since I first

requested the information on his bili-count. It has been four days

since I walked into the office and requested to see the record

myself. I don't want to be unreasonable -- How long is a reasonable

amount of time to give them to find the record before filing a formal

complaint? What is the legal end of this, anyone know?

Nothing found, the VERY Bad News:

The part that steamed me the most about this whole thing is that

the ENT had called this doctor's office for the bili-count as well.

Well, at the well-child check Thursday morning, the doctor tried to

assure me that all was truly well, because she had given the ENT

the bili-count numbers that he had requested.

" How, " I asked her " were you able to give him the numbers (the bili-

count) if you can't find his record? "

She pointed to her head and said that she had remembered them.

I nodded on the outside, but inside I was thinking " Are you kidding

me? "

So I asked " What were they? " and she said " 16 or 17 " ...

She also added that those numbers probably meant nothing to me

at the time which is why I couldn't remember them -- but she, being

the doctor who knows about these things " could " remember them.

Uh-huh.

This was so wrong of her. It gives possibly misleading information

to the ENT that is trying to diagnose the cause of my son's hearing

loss.

My son just turned four years old this month. This office is busy,

and it goes without saying that she has many more patients than just

my son. What she is claiming is that for five full years, this

doctor (whose office has gone through a complete restructuring due to

a bitter divide within and the subsequent departure of the founding

doctor of the practice) kept my son's highest bili-rubin at instant

recall level in her head?

Do I sound incredulous? Because I am.

If I hadn't gone to that office myself and discovered that the

record was missing, I would have simply asked the ENT what

the bili-count was that the other doctor had given him.

I would have presumed that it had come directly from Eamon's

record -- and I would be a very mis-informed parent. This is hugely

wrong what she did!

It didn't happen that way -- but that is the way that it

was intended to happen -- all to cover up for a lost record!

(am I jumping the gun here, with the what if's -- maybe?)

At this moment, the ENT is the one who is misinformed -- but at

least I know that those numbers could be wrong -- and will give him

the correct numbers myself when I have the record in my hand.

She should have just told Eamon's ENT that the record was lost

and that she would get back to him.

Since (as I wrote above) the treatment is the same whether the

bilirubin is the cause or not, then nothing will come of this except

for the fact that the practice is losing our

large family (all seven of us) as patients. They will be our

" primary care physicians " no more.

So, until that record is found, his bili-count is still officially

unknown.

Thanks for listening to me gripe... (I do hope it is okay that I did

this)....

I feel a bit better now -- do you all have my headache?

Pat

mom of Eamon, 4(HoH)

(and 4 very loud hearing children: Adam, 13; , 12; , 10;

, 9)

[Guest guest]

I am a nurse and I have had many lab values in my head for a day or so, maybe

longer if they were really critical labs, but I seriously doubt that this

pedi " remembers " what your 4 year olds levels were. I'd report this incident

to the State medical review board if I were you. Gives me the impression

that this pedi just made up numbers, or really has your records and has

something to hide.....but I am a suspicious type (grin)

I am behind on emails and don't remember your story but a 16-17 can be

significant in some babies, especially preemies.

I hope your headache is better.

ELaine

Cueing Mom to Jake/Auditory Neuropathy/Clarion S-Series 2-99

[Guest guest]

> I do hope it is okay that I did

> this

That's what we're here for. Sometimes the only comfort we can offer are words

and a

cyber-shoulder to cry on. Much of the time, having the ability to do so among

friends who

can empathize with what you're going through can help you feel better - and when

you feel

better, you're better able to plan for and care for your child(ren).

The medical center once lost my records for 4 years. Since I was on a lifetime

med for a

heart arrhythmia, I was really PO'ed when I found out they lost them. I hope

they find

your son's records sooner than that, but if they don't I'm sure your son's ENT

will

proceed accordingly, but make sure he knows the number he was given may or may

not have

been correct.

Hugs,

Kay

kay@...

Listen Up Web

http://www.listen-up.org/

[Guest guest]

>

> So I asked " What were they? " and she said " 16 or 17 " ...

>

We have a new baby in our house so I haven't been following many threads but

this caught my eye. Bili counts of 16 or 17 don't seem that high??? My

newborn was jaundiced -- they took a count at 4 days old and it was 16 --

pediatrician told me they don't worry until it hits 20. We didn't need to

use the bili-lights or anything -- and just from my observation, the

jaundice was mild. Was Eamon's jaundice bad enough to require bili-lights,

etc.? If so, then this doc could be WAY off on her recollection -- the

perfect, photographic memory that she has (sarcasm intended).

You have every right to be extremely frustrated. Just a thought...but if you

have an attorney you use, maybe they could subpeona the records? I would

think the doc's office only has a certain amount of time to respond to a

subpeona. I also think state laws might be different. In one state we lived

in, they would NOT give ME copies of records because they were the property

of the doctor (Whatever!), yet in another state of residence, they happily

copy the whole thing and hand it over. Please don't consider this expert

advice! I'm just brainstorming...

Hugs,

Pam

Mom of Demi (age 9-hearing impaired) and three ALSO very loud hearing

children

[Guest guest]

Three replies in one! Kay, Pam and Sheri...

***Kay,

Thanks for letting me know it is ok to gripe here. It really did

make me feel better. And I'm getting good advice to boot!

Four years is a long time to lose records... where in the world

did they turn up, the record room? Or didn't they tell you?

***Pam,

Congratulations on your new baby! Is it a girl baby or a boy baby?

Eamon was on bili-lights -- a company brought the lights to our house

-- it was a wrap-around his upper body light... I don't know how

long he was on them -- my husband says about a week...

You wrote about doctors owning the records, and possibly getting a

lawyer... -- I remember running into that doctor/record ssue once

before... it irritated me then, and it irritates me now... I called

our health insurance company this morning and told them my plight --

and said " Since your company has paid for the record that was lost,

is there any means that you can use to help me to expedite it being

found? " I also asked them if there was any way that they could look

up the codes for the procedures that they paid for to help me to

recreate his immunization record. The answer was that I could file a

complaint -- and that if I needed to, I would write them a letter

asking for help in recreating the immunization record... (that

doesn't mean that they will be able to do it, though)

If it comes down to Eamon possibly having to be dropped from the

preschool program when he turns five (state law on immunizations),

then LONG before that happens there will have to be legal action.

I hope it doesn't come to that -- but if it does, I hope it works!

***Sheri,

You have heard that the losses from bili CAN be progressive?

If I can find out from the Insurance company (via billing records)

what lab performed the bloodwork, then that a possibility for finding

out the bili count.

What a mess and a maze -- and I know this is nothing compared

to the tugs of war so many of you have been through -- Good on you

for getting them to give your daughter more therapy -- that is an

excellent point of taking advantage of the hearing that she has left

for her to learn.

hugs back to you Pam and to you all,

thanks so much for the support and very good advice...

Pat

mom to Eamon, 4(HoH)

(and the four hearing loud kids...)

[Guest guest]

> Congratulations on your new baby! Is it a girl baby or a boy baby?

He's a very loud, crabby boy baby! I'm convinced he has an attitude about

being the youngest of four! But he's also beautiful and healthy so life is

good!

> Thanks for letting me know it is ok to gripe here. It really did

> make me feel better. And I'm getting good advice to boot!

I think we've all done our share of griping on this list -- it's theraputic

to tell someone who understands!

Hang in there and keep us posted.

Hugs,

Pam

[Guest guest]

<< > So I asked " What were they? " and she said " 16 or 17 " ...

>

We have a new baby in our house so I haven't been following many threads but

this caught my eye. Bili counts of 16 or 17 don't seem that high??? My

newborn was jaundiced -- they took a count at 4 days old and it was 16 --

pediatrician told me they don't worry until it hits 20. >>

My (hearing) daughter's bilirubin level got to 21 and we did the bili-suit

light at home for her. My son, who is profoundly deaf, was jaundiced, but

never enough to even get a count. I know his was less than my daughters, but

can imagine that it could have been around 15. From what I have read and

heard though, a level under 20, as stated above, is not a reason for concern.

I never even thought of this as a possible cause for his deafness before.

~Rhonda

[Guest guest]

> where in the world

> did they turn up, the record room?

You guessed it. They were mis-filed.

Hugs,

Kay