Anyone know about this?

Judy/Bob Dilworth dilworth at megsinet.net
Sun Mar 28 09:55:43 EST 1999


I am reposting to sci.med.pathology.  Hope this helps you out.

Judy Dilworth, M.T. (ASCP)
Microbiology

Bill Peck wrote:
> 
> I apologize for cross-posting this to five different newgroups, but a
> friend has a 2 year old who is dying and I am looking for information.
> 
> Dakota is 2 years old.  His insides are being taken over by blood
> vessels.  Apparently, this condition is extremely rare.  The best term
> they can come up with is "Systemic Lymphatic Angiomatosis."  The cells
> in his body that produce blood vessels during gestation have never
> stopped reproducing.  Blood vessels are reproducing continually
> everywhere inside his body, and as a result, forming "nests" and "webs"
> and masses.
> 
> All the treatments he has had have been experimental. Dakota has had
> respiratory arrest and heart failure.  Each time, so far, he has been
> able to be revived.  The most recent life-threatening condition has been
> with his lungs.  They have filled with fluid and then turned to mass.
> The doctors tried surgery to correct this, by scraping and sealing the
> lining of the lungs.  However, we have just recently learned that it was
> not successful in keeping the disease out.  The blood vessels have eaten
> right through the lungs in a short period of time. The right lung is
> completely taken over and the left is partially.  His breathing is
> labored, but with medications,
> his oxygen level is maintaining right now at a good rate, but probably
> not for long.  Dakota looks and acts normal except for having to be on
> oxygen on and off.
> 
> The doctors also determined this week that the disease has spread to his
> chest cavity, throat, heart, and spleen.  With it spreading this fast,
> there is little time.  The doctors are continuing with chemotherapy to
> try to slow down the disease.   Dakota also gets blood transfusions for
> hemoglobin and platelets regularly.  He requires them about every other
> day, right now.
> 
> Dakota is currently being treated by Dr. Cornelius at DeVos Children's
> Hospital in Grand Rapids, Michigan.
> 
> If you are familiar with this, or a similar condition, please contact me
> at jdolson at iserv.net.  If you know of an appropriate newsgroup, feel
> free to cross post this message, but not after May 1, 1999.  Please *do
> not* cross post to any 'alternative' medicine newsgroups.
> 
> Thank you.
> 
> Jim Dolson
> Grand Rapids, MI
> March 18, 1999
> jdolson at iserv.net



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