Details -- What the heck happened?

Allaya,
Thank you so much for stopping in and telling us what is happening. I
am so sorry that Lainey has had to go through all that she is going through
(you too) and has, perhaps, MAC. I certainly hope that she responds to the
medications without any side effects, and will be able to go off of them
after just 6 months!
I know what you are going through is very stressful, but please try to
take care of yourself as well. And remember, we are here for you.

Janise


"Allaya Diep" wrote in message
news:cJOEc.19503$6r1.17501@fed1read06...
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

Hi Allaya,

Let's hope they have finally got to the bottom of the cause of Lainey's
problems.
Prayers going to you both.

Hugs,

Nora

Allaya, may I add my prayers to what Janise wrote. She expressed it very
well, and I couldn't say it any better.

--
Star love,
Norma
PM OES
"Janise Ross" wrote in message
...
Allaya,
Thank you so much for stopping in and telling us what is happening. I
am so sorry that Lainey has had to go through all that she is going
through
(you too) and has, perhaps, MAC. I certainly hope that she responds to
the
medications without any side effects, and will be able to go off of them
after just 6 months!
I know what you are going through is very stressful, but please try to
take care of yourself as well. And remember, we are here for you.

Janise


"Allaya Diep" wrote in message
news:cJOEc.19503$6r1.17501@fed1read06...
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

In article cJOEc.19503$6r1.17501@fed1read06, "Allaya Diep"
wrote:

Good morning Allaya,

Thank you for the very detailed explanations. You certainly have gone
through a lot. Great though, that throug all the help in your hospital,
you are getting the answers. Your little one is a real trouper. Good for
her. Lets hope that you can slowly go back to a more regular routine with
not so many hospital visits. Also great that there is a name for her
problems and that there is research going on in that field.

Have a very nice long weekend with your family and hugs all around

Els

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

--
hate spam not welcome

"Allaya Diep" wrote in message
news:cJOEc.19503$6r1.17501@fed1read06...
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


A suggestion whether or not she goes deaf is:

Baby Signs: How to Talk with Your Baby Before Your Baby Can Talk by Linda
Acredolo

I knew ASL (American Sign Language) long before I had my DDs , and my DB is
a certified ASL Interpreter. It is so helpful because children's desire to
communicate far outpaces their ability to speak. Even with just really
simple signs (please, thank you, more, all done) it saves on a good deal of
screaming (on both your parts ;-0)

JJMolvik

Good heavens, Allaya! This is incredible! I really hope that they can find
something else for Lanny to take.
Hugs to both of you!
Katherine