Daniel has an unknown disease.  He and his parents are looking for anyone who can help them find the right diagnosis for his condition.   In the past, I've helped Daniel and his parents locate information about various conditions by looking thru various databases on the Internet.

His mom sent me the background information on Daniel's progression with his unknown disease.  I update this page whenever I get any updates on Daniel.

Daniel's mom, Deanna, provided me with Daniel's medical history from May 1995 thru December 1997. 

May 1995:  Dan, then age 10, had a low grade fever of 101 degrees for 2 days (101).  Roughly 2 weeks later, Dan woke up with pain in his right shoulder and winging of the scapula.  (Dan has had low grade fevers off and on since then). 
October 1995:  Dan lost his eyesight three times for a very short time. (Dan went all black for less than a minute.)  Dan entered Children's Mercy Hospital for a full work up.  Nothing was found.
January 1996:  Dan went to Shriners Hospital in St. Louis, Missouri.  The doctors there said to wait because the shoulder would get better with time.
February 1996:  Dan was rechecked at Children's Mercy Hospital.  Again, the doctors said to wait because the shoulder would get better. 
May 1996:  Dan had another EMG at Shriners Hospital.  Again, doctors said to give it more time to heal.  All this time Dan has been in extreme pain if touched on the right shoulder or back. 
Mid May 1996:  Dan started having problems swallowing. 
Late May 1996:  Dan returned to Children's Mercy.. Dr Chaves said Dan was making it all up.  Started seeing Dr. Zukaitis, an anesthesiologist at Children's Mercy Hospital, for pain management.
Late May 1996:  Dan was referred to Dr. Walton, ENT, who ordered tests.
June 1996:  First swallow study was done (showed food was pushed to one side followed by MRI of upper body and head.  The reading was normal. 
June 1996:  Dan saw Dr. Fresian who put a scope down his throat to check for growths.  The results were normal.
September 1996:  Dan had some testing done at the Mayo Clinic in Minnesota.  The doctors didn't know what to do but told us to keep looking for the answer. 
October 1996:  Dan's choking seems to have gotten worse.  He even chokes  when he sleeps. 
November 1996:  Dan had another swallow study, which showed problems pushing food down. 
December 1996:  Dan was seen at Shriners Hospital - an orthopedic doctor looked at him.  He didn't want to fix Dan because he thought something else might be going on. 
December 1996:  Dan had heart racing in the 130 range for 3 days so he had a 24-hour heart monitor.  The readings were normal. 
January 1997:  Shriners Hospital follow up (didn't know what to do). 
January 1997:  Dr. Walton called and wanted to see Dan's records.  Dr. Walton wants referral for medical help outside of the Kansas City area. 
February 1997:  Dan had trouble with his neck - swollen lymph nodes, which are very painful. 
March 1997:  Dr. Walton took a cluster of 6 lymph nodes out as well as performed muscle and skin biopsies.
April 1997:  Dan had another swallow study, which showed that it takes three times to push food down. 
May 1997:  Dan started having pain in his right hand.  He saw Dr. Carrol, an orthopedic doctor.  Dan's hand was hot to touch and had too much pain.  Dr. Carrol ordered a full body scan, which was normal. 
June 1997:  Dan went to Georgetown University in Washington, DC where he saw Dr. Harley and Dr. Shafrir.  They seemed very concerned after many tests swallow study showed it took 5 pushes to get food down.  They believe that it is a possible vagus nerve disease and want Dan to see Dr. Anne Connley in St. Louis, Missouri. 
September 1997:  Dan saw Dr Connley but she didn't know what to do. 
November 1997:  Dan has pain in his neck. - It a shooting zapping pain that never stops.
December 1997:  Dan had an MRI scan. - The results were inconclusive. 
December 1997:  Dan has lost hearing on the affected side.

December 29, 1997:  Daniel's family is now looking for a referral to a hospital specializing in rare disorders.
January 7, 1998: Daniel is probably headed back to Mayo Clinic. - This time doctors will send letters to insurance for referral for consutlation and tests there.
February 2, 1998:  Daniel's mysterious disease is now affecting his other shoulder and arm.  Now thw doctors here have suggested that he see a doctor in Pennsylvania.  He is still going to school.
February 14, 1998: Daniel has a probable diagnosis of Reflexive Sympathetic Dystrophy (RSD).  A doctor who has been following Daniel for over a year made the probable diagnosis.  Now the doctors want to send Daniel to a pediatric specialist in RSD in Boston Massachusetts.
March 5, 1998:  Daniel's therapists do NOT believe that he has RSD.. They believe that he has bulbar palsy.  Daniel's paternal grandma called me to do some searching on the Internet on bulbar palsy.  What little information I found on bulbar palsy does not sound good at all. :-( The next step is to get Daniel to Mayo Clinic for an evaluation by a specialist there.  The appointment is May 4th.
March 17, 1998:  I spoke with Daniel's paternal grandma.  We discussed the possibe diagnosis of bulbar palsy.  We talked about his prognosis if he has it.  Daniel is definitely going to Mayo Clinic on May 4th.  I will update this page after the appointment. 
April 9, 1998:  Daniel is now experiencing twitching on the side that is most affected. 
April 27, 1998:  One of Daniel's lungs is affected by his illness.
May 22, 1998:  Daniel and his parents went to the Mayo Clinic earlier this month.  They did not get a diagnosis.  The head of child of neuorology said it is all in Daniel's head but the ENTs there disagree.
June 23, 1998:  Daniel had a 24-hour EEG earlier this month.  According to his paternal grandmother, Daniel had two episodes during the testing.  But the doctors still cannot figure out what is wrong with him.
January 4, 1999:  I spoke with Daniel's paternal grandma in December.  Daniel's unknown disease continues to progress.  He still has no diagnosis.  I  suggested to Daniel's paternal grandma that Daniel's mom talk to the doctors about testing Daniel for a mitochondrial disorder.
February 6, 1999:  I spoke with Daniel's paternal grandmother today.  Deanna, Daniel's mom, has been doing some research on mitochondria.  She feels that this is what Daniel has and wants the doctors to test him for it.  The doctors here are reluctant to test him for it though.  Daniel would have to go out of state to have a biopsy of live muscle tissue done.  Daniel's swallowing problems are getting worse.  He has two lumps.. one behind one of his ears and one on the back of his neck.
February 18, 1999:  I spoke with Daniel's paternal grandmother today.  Daniel has an MRI scheduled for sometime next week at KU Medical Center.  The MRI is being done on his neck..  The doctors say there is a growth that is pushing his larynx out.  Deanna is still pushing for Daniel to be tested for mitochondrial disorder.  One of the doctors says that Daniel may have Lou Gehrig's disease.
July 11, 1999:  There is nothing new to report on Daniel.  I believe that he had another test back in April but the test prove to be inconclusive.  I will update Daniel's condition as soon as possible.
October 3, 1999:  Daniel woke up with paralysis on one side of his face last Thursday morning.  His mom took him to the hospital.  The doctors told Daniel and his mom that it is Bell's Palsy.  Daniel is on steroids to see if the paralysis goes away.  Daniel was not able to get the referral to Atlanta because the doctor there no longer has the funding to do biopsies on live muscle.
October 8, 2000 - I just realized it has been over a year since I updated Daniel's condition.  As far as I know, Daniel's condition has remained unchanged.  He has no diagnosis for his condition.

November 17, 2001 - It's been over a year since I've updated this page.  As far as I know, his condition has remained unchanged and undiagnosed.  However, David, his younger brother, had tumor removed from one of his kidneys in August 2001.