Early
Symptoms
Alpha’s
Web Sites
Alpha
Atlas
Any
of these early warning signs may signal his presence. This guide
may help you to identify a possible oncoming infection and afford
you the opportunity to seek out the appropriate treatment.
Adult
Symptoms
Childhood Symptoms
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Note:
Symptoms listed are from a collection of postings that pertained
to their experiences with Adults and Children and submitted
by the Alpha-Liver Mailing Support Group List. Readers should
always consult their physicians before taking any action (or inaction)
which may affect their health or involve decision making.
Alpha
Liver Doc’s Corner:
If you would like to
read, or print out, Dr. Teckman’s
technical papers go to the following
site: http://pubmed.gov. At the top, in the box that
says for, type in: teckman j (no punctuation, e.g., smith
ja). Then click on: Go. His articles will pop up.
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Early
Alpha Liver Symptoms Highlights
Liver
disease is not the only cause of some symptoms. Consult your physician.
- Ankles
swelling
- Anxiety
- Ascites
- Asthma
- Bad breath
- Body odor
- Bloating
- Bowel movement,
increased frequency
- Bronchitis
(chronic)
- Cirrhosis
- Cramps
- Diarrhea
- Edema
- Fatigue
- Fluid retention
- Flu
- Jaundice
- Joints,
aching
- Liver, tenderness
- Liver enzymes,
elevated
- Liver function
tests, elevated
- Mental lapses
- Mononucleosis
- Muscle tightness
- Night sweats
- Pain in
right side
- Sinus infection
(chronic)
- Stomach
upsets, frequent or severe
- Stool, black,
grayish
- Stool, unusually
hard, unusually soft
- Urine, dark
Adult
Symptoms
The following are
summaries of individual experiences regarding early symptoms of
liver disease. Readers should always consult their physicians before
taking any action (or inaction) which may affect their health.
- Cirrhosis found after
ten years’ failure to confirm hepatitis. Cause of cirrhosis
undiagnosed; platelet count fell to 90, biopsy confirmed alpha.
- Long-term elevation of liver enzymes.
Biopsy found alpha, five years later bloating, fluid retention.
- Slightly elevated liver enzymes
for a year, then bloating and right side pain, and dramatically
abnormal liver enzymes. Biopsy at time of gall bladder surgery
found alpha.
- Asthma began at age 26, with recurring
moderate influenza, sinus infection, pleurisy, fatigue. COPD diagnosed
at age 46. First liver involvement age 65.
- After years of treatment for asthma,
liver function tests led to diagnosis of alpha (lung and liver
affected). Biopsy showed cirrhosis. Hepatitis C found later.
- Fatigue, cramps, muscular tightness,
and out of shape; mental lapses; increase in stomach aches and
susceptibility to influenza.
- Fatigue, mental confusion, right
side pain, bloating, black stool. Two years of high liver enzymes.
Tenderness of liver, severe fatigue. Diagnosed alpha.
- Jaundice and diarrhea at age 17;
presumed chemical exposure. Exceptional fatigue during and after
pregnancy. Bloating 1989, right side pain, inconclusive ultrasound.
1990, bad response to Provera. 1992, bronchitis and onset of chronic
sinus infection. 14. Increased liver function tests, influenza,
rise in blood pressure. l998. Severe fatigue, aching joints.
- Platelet count decreased two years
before alpha diagnosis, and five years before symptoms. Marked
fatigue. Digestive problems (stool noticeably hard or soft, bad
breath and body odor), night sweats. Symptoms worsen over six
months or more.
- First noticed increased frequency
of bowel movements. Elevated liver enzymes, biopsy confirmed alpha.
- Constant bloating and fullness,
some tenderness around liver. Cirrhosis. Diagnosed alpha age 23.
- Elevated liver functions for 14
years; marked decrease in energy; rapid decline ending in transplant
after bilirubin reached 3.3.
- Ten years of slightly elevated
liver function tests; stomach pains led to inconclusive ultrasound,
then to endoscopy which revealed esophageal varices, and a presumptive
diagnosis of cirrhosis. Blood test for alpha revealed ZZ. Fifteen
months later biopsy confirmed alpha and cirrhosis.
- Elevated liver enzymes while hospitalized
for throat infection. Bad response to medication due to liver.
Previous mononucleosis and migranes, and unexplained elevation
in liver enzymes.
- Asymptomatic until episode of esophageal
bleeding.
- Fluid retention in stomach, ankles,
and feet. Fatigue and weight loss. Fresh blood in stool.
- Chronic nose bleeds, and shortness
of breath. Fluid in legs and lungs, infections in kidneys and
testicles, latter with pronounced swelling.
Childhood
Symptoms Summary
-
I’ve given a
lot of thought to the symptoms that XXXX had and then someone
wrote about breastfeeding So I looked back at the beginning. Normal
birth, no jaundice, weight normal but breastfeeding didn’t
go as well as my other three children; also her stools were very
foul smelling and very loose. At 18 months I thought she had to
have milk allergies (also large tummy), so we went to the Gastroenterologist.
After they ruled out everything from cancer to Wilson’s,
they finally did the open liver biopsy (so far 3 needle 1 open);
A1AD MZ diagnosis. That was six years ago and at least every test
known to mankind. She’s had other things from:
• small liver
• cirrhosis
• asicitis
• large spleen
• portal hypertension
•
Varice of the esophagus (which bled this summer three time’s)
•
kidney pancrese (last summer)
But all and all, she is doing
tons better and is back in school. She has some learning disabilities.
XXX had a REX shunt and we are hoping that this will be in place
of a transplant. This is a new shunt, only five kids have had
it done in the XXX, but only XXXX was able to use her coronary
vein not her jugular.
mpeg to mp3 on this site
- XXXX, I didn’t have any of
the problems you mentioned during my pregnancies. I did, however,
have morning (and afternoon and evening) sickness all nine months!
-
After reading the
responses from other parents, I must say “thank you”
for making things clearer for me. My daughter, XXXX, had an unrelated
intestinal surgery when she was born, and I had attributed many
of her problems to that. Also, some of your responses jogged my
memory. I think this was a good idea.
Before diagnosis (2-1/2 weeks old):
•
Slow to gain weight
• Pale
stools - almost white
•
Cholestasis
(a radio isotope scan determined no bile was leaving the liver)
•
Liver inflammation (biopsy performed at 3 weeks old)
After diagnosis (4 weeks old):
•
Jaundice
- skin and eyes became quite yellow
• REFLUX
- frequent spit ups, but not projectile
•
Lack
of appetite and very slow at eating - content with a small amount
of formula, then would doze
off.
Sometimes she would cry painfully during and just after eating.
Otherwise she was very content,
so it was not cholic.
•
More
sleepy than the average newborn Unable to tolerate most formulas-had
to use Alimentum
(she
couldn’t even tolerate Pregestimil) XXXX required a gastrostomy
(feeding tube) until she was
eight
months old. At some point, I plan to visit XXXX Children’s
and read XXXX chart again to
find out what was done and when.
After almost a year and a
half, it’s hard to remember if her bilirubin was high before
or after diagnosis. I am not even sure at what point they ordered
the test for Alpha1.
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-
A question for the Moms—did
you have a normal pregnancy? I ask because mine was normal until
I had a rash during the last month. XXXX’s contribution of
itchiness as a symptom for XXXX made me think of this, because
I itched severely with no relief. My OB tested my liver enzymes
and found they were slightly elevated. Was this just a coincidence?
XXXX’s symptoms were
as follows:
•
failure
to thrive—born at 10lbs. 4oz and at six wks he was 10lbs!
•
normal and healthy at birth and then at three weeks he developed
jaundice—all over.
•
a very yellow baby.
That is it!!
Besides his liver being enlarged. He
was a very happy baby and nursed very well. Thought his reason
for not gaining weight was because of nursing, but soon found
out that wasn’t it. After
he was diagnosed at six weeks, he was on phenobarbital, ADEK vitamins
and actigall and we haven’t had any other symptoms.
-
XXXX’s pre-transplant
symptoms were:
•
low birth weight
•
very spitty/projectile
•
A1AT level was 32, with a normal range of 83—199. Of course,
he was also put on Pregestimil
after
just two weeks of breast feeding
•
had really bad broken down skin on his bottom (those
of you with liver-disease kids in diapers
should know what I mean)
-
XXXX was diagnosed around 1 ½ months,
liver biopsy just prior to two months, evaluated for transplant
at 2 ½ months, and listed just prior to three months. I know a
major factor is the liver biopsy. Obviously,
XXXX’s was bad enough to list him. . . . . He had a lot of
fibrosis, and portal to portal track, bridging fibrosis. During
his tranplant (age eight months), when we were called in the waiting
room, after they took out his liver, I asked the nurse what his
liver looked like and she said it was bad. The subsequent pathology
report also showed bridging fibrosis as well as cirrhosis.
-
The symptoms that XXX showed were:
•
low
birth weight
• projectile
vomiting
• falling
asleep while eating
• not
able to eat a lot at one time
• crying
a lot
• always
wanting to eat
• jaundice
• unsuccessful
at nursing
-
Some of them started right away,
with building up to jaundice. The slow eating of small amounts
and projectile took many months to out grow (p.s.,
the only symptoms of the above that XXXX had was unsuccessful
nursing, (may not be alpha related), seeming hungry a lot, strong
crying after meals.
- I had projectile vomiting as an
infant and needed an operation for pylorus-stenosis, a narrowing
of the sphincter connecting stomach to bowel. A doctor once told
me this was not uncommon with A1AD but I’ve not seen it mentioned
anywhere.
- I also had projectile vomiting
as an infant, but nothing was ever done about it.
-
Haven’t posted
in a while, but have been lurking. XXXX is doing very well. 17
months old now, going on terrible two. It makes me feel good when
she is acting like a normal toddler. Her
early symptoms were:
•
failure to thrive
•
projectile vomiting
•
slight jaundice detectable only in the whites of the eyes
•
very frequent loose stools.
- My daughter XXXXX was jaundiced
at seven weeks old. That was her ONLY symptom. Thanks to a very
persistent pediatrician, she went through many different tests.
Finally, they discovered Alpha 1. She’s SZ. She currently
sees a specialist at XXXX Hospital of XXXX County who has had
other cases of Alpha 1. So far, XXXX has had no other symptoms
or problems although her levels are still up.
-
I think symptoms in children vary.
With our son, he was:
•
lethargic as a newborn
•
very jaundice (not yellow but turning brown) due to the biliruben
increase
• sluggish
digestive system—determined with further testing before
diagnosis, but I could tell having
had children before him (but a new parent may not)
•
also had a lot of mucus with spit up after feeding.
- As I’m sure you have heard,
most newborns or infants with such symptoms are diagnosed improperly
at first—such as biliary atresea (not sure of spelling,
but means born without bile ducts). It is sad to think that a
heel test after birth, such as is done for PKU children, could
relieve a lot of parent’s stress such as we went through
to determine what was wrong with our baby.
- Even after diagnosis in a child,
there are a lot of things to watch for depending on where a child
falls in the Alpha1 progression of this disease.
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