Brandon Crump
Brandon was born on September 2, 1995 by C-section.  It was a normal pregnancy.  Four days later he went into a coma and our small town hospital couldn't find anything wrong.  So a team from Fletcher Allen Hospital in Burlington, VT was sent to pick him up in an ambulance.  This hospital is three hours away from home and has a good reputation.  When we got there and they didn't know what was wrong (except that his ammonia level was elevated), I got very worried.  From there they airlifted Brandon to Boston Children's Hospital which is another 4 hours away from Burlington.  They wouldn't let me ride with him either time.  By the time I reached Boston, the doctors were sure he had a urea cycle disorder, they just had to figure out which one.  He had dialysis twice to bring down his ammonia level which was in the 800's.  We stayed in the hospital until September 21st because Brandon became anemic and needed a blood transfusion.  When we finally came home, I was scared to death that his ammonia would go back up again.  I even brought him
E-mail Pam, Brandon's mom
to the ER because he seemed to be too cranky a couple of days after we got home.  Feedings were hard.  Every three hours he had to be fed and it took almost an hour to feed him each time.  I can't remember how many ounces he was drinking, but it wasn't much.  The public health nurse came everyday for the first week or so to make sure everything was okay.

Brandon was hospitalized a couple of times the first year and a half for high ammonia levels.  That was scary and the minute he would wake up I'd look for signs that he was okay and didn't get any brain damage from the episode.  Just when we thought everything was going great, Brandon started to have seizures.  This was just before his third birthday (August 1998).  He was airlifted to Rochester this time.  Before this happened we were forced to switch doctors because Medicaid would not pay for us to go out of state when there was a specialist here that we could see.  So we said goodbye to Dr. Korson in Boston after a year and a half.  We started seeing Dr. Arnold at Strong Memorial Hospital in Rochester.  After determining  that Brandon's EEG was abnormal, they started him on Phenobarbital.

In 1999 they did a liver biopsy because his liver was enlarged.  They determined that he didn't have cirrhosis, that there was just fatty deposits making it enlarged.  This is when they started him on Polycitra.  His liver had decreased a little in size since then.  Shortly after that they started him on Buphenyl, because his ammonia levels always tended to be slightly high.  This has also helped.  Brandon's ammonia levels are normal now, and his liver function tests have decreased.  They also where always high.  Brandon has been doing great since then.  We tried weaning Brandon from Phenobarbital in 2002 but he had a high fever and had 2 grand mal seizures.  The doctors put him back on.  This year (2004) at school he was having absence seizures.  We had 2 more EEG's that came back abnormal.  His ammonia level was very high.  I think he was out growing his dose of Arginine and Buphenyl.  The genetics doctors increased these.

Developmentally, Brandon is still behind.  He is in a 12-1-1 class and is learning Kindergarten things.  He is starting to sound out simple words, rhyming, counting, ABC's, etc.  He can now write his name without a model and is working on his last name.  He knows most of his letters, along with some sounds.  He has done very well in school!!

Brandon recently received a swimming pool from the Make a Wish foundation.  He's been swimming about 5 to 8 times, depending on the weather up here!  But the pool is heated and we had it about 90 degrees.  The air was so cool that they froze when they got out!

All in all, Brandon seems normal to me.  He's a little slower than other kids his age, but I think he is very smart and strong.  He is my little angel and I love him with all my heart.  I pray to God that nothing bad will ever happen to him, and that they find a cure for this disorder.
Brandon's Information as of May 2004
Contact person: Pam Northrop, Brandon's mom
E-mail: [email protected]                            Birthday: September 2, 1995
Home:  Massena, New York                                   Age at diagnosis:  4 days
Other diagnoses: Seizures                                    Siblings: Bradley, 12 years old (unaffected)
Protein Allowance: 21 grams a day + formula         Weight: about 72 pounds
Medications:
     Arginine,  Buphenyl,  Polycitra, Singulair, Phenobarbital, Floride      
Formula:
     Cyclinex 2     
     Product 80056           
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