Author Message

For 7 yrs. my daughter tried to investigate why her son was bruising, pale
and since 1992 been having nosebleeds.  Doctors all told her don't worry
about it, he's a healthy, active young boy, perfectly normal-no need for
tests.  Well, in March 1993 he was taken to a local Emergency Room for
headache, nosebleed and vomiting.  He was admitted.  The attending said they
thought it might be leukemia but that it didn't quite look like that.  After
testing he was transfered to Stanford's Childrens Hospital.  At this point
he was in critical condition.  Further testing showed:

          His Counts                Normals
          white  1.9                5 - 14.5
          red    2.20               4.0 - 5.3
          hemaglobin  6.4           11.5 - 14.5
          hct    15.4               34 - 41
          platlets  20              150 - 450

Needless to say, he was very low in his counts.

They did a Bone Marrow Biopsy and Chromosone Breakage Test.  Unfortunately-
his diagnosis came back as Fanconi's Anemia and Aplastic Anemia.  Fanconi's
Anemia is a terminal disease and fortunately very rare.  He has had 4 or 5
{*filter*} transfusions and is on a steroid (Oximethalone -sp?) and Prednisone.
His counts did go up a bit for a while.  He has no siblings and no chance
for future siblings.  He is in the Bone Marrow Registry but has no match.
His meds are starting to decrease in their effectiveness.  As we understand
it there are (at this point) no other meds that are effective for this
disease.  He is noticably paler each time when he goes for his {*filter*} draws
and exams (every 2 - 3 weeks).  His attitude is fantastic.

My point is - don't take it's nothing serious, don't worry about it, he's
just an active child etc., from any health professional.  Make them back it
up by test results.  The previous doctors tried to "save" my daughter the
price of a {*filter*} test for her son.  She asked and even changed doctors in an
attempt to get to the root of his problem.  Unfortunately - he almost died
before they got to the cause.  And now the results are horrible.  We know he
was born with this condition and nothing is available at this point.  But
maybe if he was diagnosed earlier his counts would not have had to fall so
critically low.  To have to fight back from that level has been a long, hard
battle.  His meds are giving out on him - maybe this could have been
diverted and they could have helped him longer.

If it has turned out to be a "treatable" problem like Leukemia or an
environmental cause for the Aplastic Anemia - the delay in diagnosis could
have made a big difference.  Don't ever wait too long - that could mean life
or death in some conditions.

Please take your child to a doctor and get some counts done or whatever
other tests are appropriate.  I'm not saying your child or anyone else who
has nosebleeds has a terminal illness like Fanconi's Anemia but won't you
feel better knowing it really is "just nothing to worry about".

Reggie Dwork

Wed, 10 Jul 1996 05:36:21 GMT
 [ 1 post ] 

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