Details -- What the heck happened?

In article 7IPDc.13409$6r1.7659@fed1read06, "Allaya Diep"
wrote:

Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you
can imagine, it's a really long, weird story.


Snip snip

Dear Allaya and sweet little Lainey, You must be exhausted, what a
stressfull time for all of you. Lets hope they will get to the bottom of
it all.

Have you thought of contacting one of the major hospitals in the States to
get an second opinion on all this. It certainly must be worrysome when
they get it wrong so many times.

thinking of you

Els

--
hate spam not welcome

allaya wrote:

Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you
can imagine, it's a really long, weird story.


Snip snip

Allaya

I hope you will have an answer soon. You can accept TB treatment when it's
needed, but when it's not, then it all seems a bit much. Thinking of you and
the little one

Liz

Allaya,

My thoughts and prayers go out to you and little Lainey too. What a lot for her
to go through and not need to.

Hugs,

Nora

Hi everybody

Thanks for all your morale support. You'll be happy to know that Lammy is
doing just fine. She was never really outwardly sick, but she's in very
good spirits, laughing and smiling most of the time.

I'll be checking in more often now that I'm back and my computer is in its
new place.

Allaya

"Allaya Diep" wrote in message
news:7IPDc.13409$6r1.7659@fed1read06...
Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you
can imagine, it's a really long, weird story.

We're finally back from the hospital. We were discharged last
Friday...what
an ordeal! We went in on June 2nd for a pretty routine pH study to monitor
Lainey's GERD. While doing an x-ray of her abdomen to check the placement
of
the pH probe in her stomach, they noticed that one lung was larger than
the
other. Upon further scanning, they found a pretty sizable mass in her
chest,
not really attached to anything, just floating somewhere between her
trachea
and esophagus. Unfortunately for Lammy, the mass was totally obstructing
one
of her bronchial tubes, so she was breathing essentially with only one
lung.

They sprang into action pretty quickly over there at CHOC, which is the
one
good thing I can say about it I guess...over the next few days, poor Lammy
went through a tracheoscopy and a full on biopsy in which the surgeon had
to
cut into her chest and pull out part of the mass. After the mass was
partially extracted, I don't think I'm exaggerating when I say that I was
visited by about 8 different specialists talking to me about all manner of
things from disease this and cancer that. Bleh.

Finally, the diagnosis was made, and I was visited by Infectious Disease
who
told me it was Tuberculosis. This came as a bit of a shock to me since
Lammy
was never outwardly sick...no fever, no coughing, no sneezing...not even
so
much as a sniffle. Her lungs on top of that were perfectly clear. I
thought
he was full of it and I told him so. I asked what made him think it was
TB,
and he pointed out that Lammy had a positive skin test. Yeah, well so do
1/3
of all Americans, but that doesn't mean that thy all have TB. Then he went
into some mumbling mode and excused himself because he had a cold. I asked
the other residents who visited why they thought she had TB, and they all
said, "because it couldn't be anything else." I hate it when people treat
you like you're stupid. :P

Finally, I got to the bottom of it sort of when Lainey's pediatrician came
to visit. She was understandably very concerned as to what was going on.
She
looked through Lammy's charts with me and said that they thought it was TB
because of some granulomas they found in the biopsy. I asked her if these
granulomas only occurred in TB cases, and after consulting with some other
doctors, she told me apparently yes. From a purely logical perspective
though, this was the most illogical diagnosis they could have made because
according to Infectious Disease's own admission, it's impossible to
develop
TB disease unless you are regularly exposed to somebody with the
disease...and out of my own germaphobic lifestyle, Lammy has only been
exposed, to me, Adam, and her grandfather...none of whom have TB.

Regardless of my protests, they stuck Lammy on the hell that is TB
medication. She had to take four different antibiotics, all of which made
her extremely nauseous. One in particular would cause her to throw up
every
day, and she dreaded seeing the nurses every day. She would curl up under
my
arm and cry until they went away. We were put in isolation where nobody
could come in or out without a mask...and later I found the nurses were
keeping people out in general simply because they didn't want to bother
with
telling people to put on masks. Evil nurses. Grrrr

We were released on Friday, as I said earlier, and put in the care of the
Public Health Department, who would not trust me to give Lammy her
medicine
every day...no, they insisted on coming over three times a day to give the
meds to her themselves. This put a damper on things because that would
basically mean that I couldn't leave the house for more than a few hours
at
a time, which made it absolutely impossible to do any errands. Meanwhile,
Lammy's liver enzymes started shooting up, and to avoid the risk of giving
her full-blown hepatitis, the ID doctor order her to stop her medication
over the weekend and to resume on Tuesday after she'd take another blood
test.

We stopped over the weekend, and got some more blood drawn on Monday.
Tuesday morning, I get a call from the ID office frantically telling me
not
to give Lammy any more medicine. I get a phone call later on that day
telling me not to give her any more medicine for the next week, until next
Thursday. I asked why, and the nurse told me that their initial diagnosis
was incorrect, and that Lammy didn't have TB after all, but that the
doctor
was overrun with patients (the other docs in his practice were out on
vacation and left him alone) and that he would explain as soon as he
could.

So that's where I am now...I'm angry and happy at the same time. Hate to
tell them "I told you so," but...you know.

I'm pretty exhausted and Lammy is severely traumatized from the whole
hospital stay. I hope she recovers soon. I think she's worse coming out of
the hospital than she ever was going in, poor thing.



--Allaya

Allaya wrote:

Hi everybody

Thanks for all your morale support. You'll be happy to know that
Lammy is
doing just fine. She was never really outwardly sick, but she's in
very
good spirits, laughing and smiling most of the time.

I'll be checking in more often now that I'm back and my computer is in
its
new place.

So good to hear!! Do let us know what the final word is about what's
going on. As you said, about 1/3 of the population tests positive on
the PPD, which only means that they've been exposed to TB (or something
similar; it's not that specific, and there are other species of
Mycobacterium, which is the bacteria that causes TB). I had a bout of
pneumonia back in October, and after it had cleared up and I no longer
had any clinical symptoms my x-rays still looked horrid. I was no
longer coughing or anything, but the doc did a PPD on my anyway as it
had been about 20 years since my last one; was negative still. He
eventually ordered a CT on me, which was read as 'old TB' - more likely
just damage leftover from a nasty bout of bronchitis I had about 13
years ago - so Lainey may be like me and have x-rays that look horrible
but with nothing going on.

Hang in there, sweetie. I'll keep sending good thoughts your way, and
hug that little one for me.

The Other Kim
kimagreenfieldatyahoodotcom

Kim,

Just wondering if you had received my emails about a certain project as I never
heard back and one bounced.

Hugs,

Nora

Allaya,

What wonderful news and I hope we see you more as to keep up with Lainey. Wait
until she starts crawling and walking, then she will want to help you type your
notes to us.

Hugs,

Nora

Hi Nora!

Yes, I did get them. The question is do I still have them, or were they
inadvertently deleted in the last round of emailbox purging g

The Other Kim
kimagreenfieldatyahoodotcom

Kim,

Just wondering if you had received my emails about a certain project
as I never
heard back and one bounced.

Hugs,

Nora

| On Mon, 28 Jun 2004 00:24:05 -0700, "Allaya Diep" wrote:

So that's where I am now...I'm angry and happy at the same time. Hate to
tell them "I told you so," but...you know.

Sounds like they might need to hear it, though. What a nightmare!

Helen "Halla" Fleischer, Fantasy & Fiber Artist
http://home.covad.net/~drgandalf/halla/
Balticon Art Program Coordinator http://www.balticon.org

Hello everybody

I spent pretty much the entire day at CHOC today with Lammy, and we're
pretty exhausted! We received the "finalized" word as to her diagnosis (and
even now, it's 'preliminary'), and I decided that I don't feel like putting
everything up on my website so that people who don't know me will point and
gawk. :P

It seems that we're pretty famous.or infamous I should say.around the
hospital. People know us by sight. Not the ordinary doctors.the MD PhD'
s.the hard core researchers. Yes, we're a lab rat's dream now.it turns out
Lammy's condition is pretty special to say the least. The reason being is
because she has an infection she really shouldn't have.

The "final" diagnosis is that she has Mycobacterium Avium Complex, or MAC
for short. This is a bacterium that is literally everywhere, and can be
found in such things as dust and dirt. As you can probably derive from the
name, it's spread by birds and their droppings. The fact of the matter is,
most if not all of us will become infected by this mycobacterium at some
point in our lives, and more likely than not, we wouldn't even know it. The
problem now is figuring out why Lammy grew such a nasty mass from it.

The first theory that we're exploring right now (which is why I say this is
a 'preliminary' diagnosis) is that she has an immune deficiency of some
sort, more specifically a lack of Gamma Interfuron sights or a lack of
interleuken 1 (IL1) proteins. This seems to be the most likely scenario
since she has no trouble fighting off other infections (she's never gotten a
cold). These immuno receptors and proteins are the components, which trap
and destroy mycobacteria that enter our blood stream.


Now enter the researchers. This is apparently such an unusual, uncommon
condition that there is actually research being done on it on an ongoing
basis. We were immediately snatched up by the doctor in charge of that
research group for further study and treatment. Lammy had some more blood
drawn today for this reason. Fortunately though, they were able to locate a
good vein in just one poke. We will find out within two weeks whether or
not they were successful in finding any of the Ig's or IL's.

In the mean time, Lammy needs to take two antibiotics for a minimum of 6
months. More likely than not, she will probably have to take them for the
rest of her life, if not the greater majority of it. One is toxic to the
eyes, and the other is toxic to the ears. Let's all hope she does not have
any of these side effects, or else I will have a blind and deaf child! Her
cultures are being sent for research and further study, so once they
identify the strain, she may be able to switch one of the meds for a less
toxic one.

On the good news front, we visited Lammy's surgeon today and were both
pleased to see that her wounds were healing up very well. The doctor says
that after a while we won't even see the scar anymore. We're fortunate to
have gotten him to do the surgery.as it turns out, he's one of the best
thoracic surgeons around for children AND adults.

That's all I know at the moment. As always, I'll keep you all posted.

Allaya