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This is the Cliff Notes Version of Jack's Medical History
NO KNOWN DRUG ALLLERGIES
VAGINAL DELIVERY, 37 WEEKS GESTATION
MOTHER PRECLAMPSIA, HIGH BLOOD PRESSURE, BED REST JULY - SEPTEMBER
09/04 09/08 N.I.C.U. LOW BODY TEMPERATURE AND JAUNDICE
TREATMENT UV LIGHTS & INCUBATOR
09/08 CIRCUMCISED AND DISCHARGED
2002
10/14 12/10 DEHYDRATION/MALNUTRTION, HYPOALBUMINEMIA,
HYPOPROTEINEMIA, PNEUMOTHORAX, FAILURE TO THRIVE, CLOSTRIDIUM DIFFICILE, EDEMA, SEPSIS
TREATMENT: PARENTAL INFUSION, ENTERAL INFUSION, EGD, DOUBLE LUMEN CATHETER, BROVIAC CATHETER, I.V. ANTIBIOTICS
VANCOMYCIN, GENTAMYCIN, ALBUMIN, IGS, PLATLETS, BLOOD TRANSFUSIONS, VANCOMYCIN ORAL
FEEDING: NEOCATE
P.I.C.U. 3 WEEKS, PEDIATRICS 5 WEEKS
12/12 12/23 GASTROENTERITIS W/DEHYDRATION, CLOSTRIDIUM
DIFFICILE, ROTOVIRUS ENTERITIS, EDEMA
TREATMENT: ENTERAL INFUSION, PARENTAL FEEDING
PEDIATRICS APPROX 2 WEEKS
FEEDING: NEOCATE
2003
02/08/03 02/12 CELLULITIS LEFT LEG/POSSIBLE LINE SEPSIS, ECZEMA
TREATMENT: VANCOMYCIN I.V., CEFEPIME I.V., AND GENTAMYCIN I.V., KEFLEX
FEEDING: NEOCATE
02/28 - 3/07 BACTEREMIA, ACUTE U.R.I. HEMOPHILUS INFLUENZA UNSPECIFIED, EDEMA, ASTHMA
TREATMENT: ROCEPHIN, VANCOMYCIN, AND GENTAMYCIN ALBUTEROL TREATMENTS, ORAPRED
FEEDING: NEOCATE
03/12 03/13 CLOSTRIDIUM DIFFICILE COLITIS
TREATMENT: FLAGYL
FEEDING: NEOCATE
04/09 04/16 VOMITTING, DIARRHEA, WEIGHT LOSS, DEHYDRATION, CLOSTRIDIUM DIFFICILE
TREATMENT: VANCOMYCIN ORAL, ALBUMIN
FEEDING: ELECARE, BACK TO NEOCATE
05/19 05/23 STAPH INFECTION, SWOLLEN SCROTUM, RED EDEMATOUS LEGS, FEVER 104.3
TREATMENT: ANCEF, KEFLEX @ HOME
FEEDING: NEOCATE
06/05 06/10 - STAPH INFECTION, SWOLLEN SCROTUM, RED EDEMATOUS LEGS FEVER 104.5
TREATMENT: ANCEF, KEFLEX & RIFAMTIN @ HOME
FEEDING: NEOCATE
06/14 06/17 - STAPH INFECTION, SWOLLEN SCROTUM, EDEMATOUS LEGS
TREATMENT ANCEF, CLINDAMYCIN
FEEDING NEOCATE
TRANSFERRED TO CHILDRENS HOSPITAL OF PITTS. 06/17/03 VIA PLANE
06/17 06/20 STAPH INFECTION, SWOLLEN SCROTUM, EDEMATOUS LEGS, CLOSTRIDIUM DIFFICILE COLITIS, CELLULITIS
TREATMENT ANCEF, CLINDAMYCIN
FEEDING NEOCATE
THE MAIN REASON FOR THE TRANSFER TO CHILDRENS HOSPITAL OF PITTSBURGH WAS TO SEE THE DIAGNOSTIC REFERRAL TEAM.
WE WERE SEEN BY DR. ANDREW URBACH, DR. ELLEN WALD, DR. CARLO Di LORENZO, AND DR. DAVID NASH. THEIR OVERALL
CONCLUSION WAS IN AGREEMENT WITH OUR DOCTORS AS FAR AS JACKS FOOD PROTEIN INDUCED ENTEROCOLITIS
SYNDROME. IN REGARDS TO HIS EDEMA, THEY BELIEVE JACK HAS CONGENITAL LYMPHATIC DISORDER. THEY
REFERRED US TO duPONT HOSPITAL FOR CHILDREN.
06/28 07/02 STAPH INFECTION, EDEMATOUS LEGS, RED MILDLY SWOLLEN SCROTUM, CLOSTRIDIUM DIFFICILE COLITIS, CELLULITIS
TREATMENT I.V. ANTIBIOTICS
FEEDING ELECARE 20 CAL.
2004
12/31 01/03/04 STREP B INFECTION, CELLULITUS, SWOLLEN SCROTUM, 103.5 FEVER
TREATMENT GENTAMYCIN, ANCEF
FEEDING ELECARE 20 CAL.
03/07 03/12 - CELLULITIS, STREP B INFECTION, SWOLLEN SCROTUM, 104.3 FEVER
TREATMENT GENTAMYCIN, VANCOMYCIN, AMPICILLIAN, FEEDING TUBE
PLACED
FEEDING - ELECARE 20 CAL.
03/24 04/20 MALNUTRITION, MILD DEHYDRATION, FAILURE TO THRIVE
TREATMENT TOTAL PARENTAL NUTRITION, PREDNISLONE, FORMULA
CHANGED TO VIVONEX PEDIATRIC.
FEEDING VIVONEX PEDIATRIC 24 CAL., CORN PRODUCTS ONLY
05/30 06/01 FEVER, CELLULITIS, SWOLLEN LEGS AND SCROTUM
TREATMENT I.V. ANTIBIOTICS
FEEDING VIVONEX PEDIATRIC 24 CAL., CORN PRODUCTS ONLY
06/20 06/25 FEVER CELLULITIS, SWOLLEN LEGS AND SCROTUM
TREATMENT I.V. ANTIBIOTICS
FEEDING SWITCHED FROM VIVONEX PEDIATRIC BACK TO ELECARE 24 CAL.
07/03-07/06 FEVER CELLULITUS, SWOLLEN LEGS AND SCROTUM
TREATMENT I.V. ANTIBIOTIC
FEEDING ELECARE 24 CAL.
OCTOBER 2004
THROUGH SOME INVESTIGATING, WE FOUND DR. PHIL PUTNAM AT CINNCINATI CHILDRENS HOSPITAL. WE TRAVELED TO CINNCINATI
ON OCTOBER 17, 2005. A 48 HOUR ALLERGY PATCH TEST WAS STARTED ON THE 18TH. MET WITH DR. PUTNAM ON THE 21ST WAS ADMITTED
LATER IN DAY FOR PREPARATION FOR ENDOSCOPY ON THE 22ND. GO-LYTLY FLUSH WAS STARTED AS CANOLA OIL WAS
ADDED TO JACKS G-TUBE AS PER DR. PUTNAM TO HELP WITH RULING OUT LYMPHANGIECTASIA.
IN MORNING OF OCTOBER 22ND, WAS GREETED BY SENIOR PEDIATRIC DENTAL RESIDENT DISCOVERED ECTODERMAL DISPLAYSIA,
WAS CONFIRMED BY DENTAL ATTENDING AND THEN BY GENETICS. DR. PUTNAM FOUND C-DIF IN ONE OF THE BIOPSIES
FROM ENDOSCOPY STARTED TREATMENT OF VANCOMYCIN IMMEDIATELY.
OCTOBER 25, FOLLOW UP WITH DR. PUTNAM SAID NO SIGNS OF LYMPHANGIECTASIA AND FEW ESINOPHILS IN GUT,
JACK HAS SOME ULCERS IN COLON MAY BE JUST FROM C-DIF. DR. ASKED US TO STAY ON TIL WED. OCTOBER 27,
TO SEE IMMUNOLOGIST DR. RISMA. ON WED. SHE INFORMED US OF A RARE GENETIC DISORDER ASSOCIATED WITH
ECTODERMAL DISPLYASIA CALLED NUCLEAR FACTOR KAPPA B ESSENTIAL MODULATOR (NEMO) AND STARTED TESTED FOR THIS.
PRELIMINARY DIAGNOSIS MADE AT THIS VISIT TO CINNCINATI CHILDRENS HOPSITAL.
NOVEMBER 2004
NOVEMBER 17TH WENT TO NEW YORK TO DR. JED BEST, PEDIATRIC DENTIST. CONFIRMED JACKS ECTODERMAL DISPLAYSIA.
SAID JACK IS CUTTING 2 MORE TEETH (4 TOTAL) MAY NOT CUT ANYMORE. DR. SAID HE DIDNT WANT TO SEE JACK AGAIN TIL 3 YEARS OLD.
DECEMBER 2004
12/17-12/18 ST. BARNABAS MEDICAL CENTER LIVINGSTON, NJ ADMITTED FOR FEVER, DISCHARGED AFTER OBSERVATION AND FLUIDS
12/20 - DR. PERLMAN SENT JACK FOR X-RAY SHOWED POSSIBLE PNUEMONIA
12/21 - DR. RISMA WAS CONSULTED AND CALLED TO TELL US TO TAKE JACK TO
THE HOSPITAL. AFTER TELLING US THAT PNEUMONIA COULD BE LIFE
THREATENING TO JACK. SHE TOLD US A BRONCHOSCOPY WOULD BE NEEDED. SHE ALSO TOLD US THAT
SHE HAD CONTACTED DR. JORDAN ORANGE AT THE CHILDRENS HOSP. OF PHILADELPHIA (CHOP).
DR. ORANGE CONTACTED US AND TOLD US THE BEST PLACE FOR JACK WAS AT CHOP.
DR. ORANGE MADE ARRANGEMENTS FOR JACK TO BE TRANSPORTED TO CHOP.
12/22 12/24 ADMITTED TO CHOP, BRONCHOSCOPY WAS DONE. TESTING FOR NEMO
WAS REDONE AND IVIG (IMMUNOGLOBULINS) ADMINISTERED FOR THE 1ST TIME.
12/27 12/30 ADMITTED TO MORRISTOWN MEMORIAL HOSPITAL FOR DEHYDRATION
MALNUTRITION AND VOMITTING. TRANSPORTED TO CHOP
JANUARY 2005
12/30 01/20/05 - ADMITTED TO CHOP FOR DEHYDRATION AND MALNUTRITION
MYCOBACTERIAL INFECTION FOUND
TREATMENT TOTAL PARENTAL NUTRITION, BIAXIN, RIFABUTON, ETHAMBUTOL
FEEDING ELECARE 27 CAL.
3/15 3/18 CHOP DEHYDRATION, VOMITTING
TREATMENT IV FLUID, JEJUNUM FEEDING TUBE PLACED
3/20 4/18 ADMITTED TO ST. BARNABAS I.C.U FOR DEHYDRATION
JACK PRESENTED WITH EYES CROSSING MRI REVEALED SUPERIOR
SAGGITAL VENOUS THROMBOSIS (AKA STROKE)
AIR LIFTED TO CHOP MARCH 22. ADMITTED TO CHOP I.C.U
TREATMENT LOVENOX INJECTIONS (HEPRIN) 2 TIMES A DAY.
FEEDING CHANGED TO NEOCATE JR. Ύ STRENGTH MIXED WITH
PEDIALYTE.
TREATMENT FOR N.E.M.O IS IV-IGS EVERY 21 DAYS
STROKE TREATMENT LOVENOX INJECTIONS
LOWER EXTREMITY SWELLING COMPRESSION GARMENTS
BONE MARROW TRANSPLANT
ADMITTED MARCH 14, 2006
ACTUAL TRANSPLANT ON MARCH 25, 2006
EARLY INTERVENTION SERVICES MARCH 2003 AUGUST 2005
SERVICES FOR P.T., DEVELOPMENTAL INTERVENTION
CONSULT FOR SPEECH THERAPY, AND FAMILY SERVICES
CENTRAL LINE PLACEMENT BROVIAC CATHETER 11/11/02
ENDOSCOPY W/BIOPSY 12/05/02
ENDOSCOPY W/BIOPSY 02/05/03
LYMPH NODE ABCESS ON NECK DRAINED 02/14/03
CENTRAL LINE REMOVAL 02/26/03
SIGMOIDOSCOPY W/BIOPSY 03/26/03
ENDOSCOPY W/BIOPSY 06/01/03
COLONOSCOPY W/BIOPSY 06/01/03
ENDOSCOPY W/BIOPSY 07/01/03
COLONOSCOPY W/BIOPSY 07/01/03
ENDOSCOPY W/BIOPSY 11/20/2003
COLONOSCOPY W/BIOPSY 11/20/2003
ENDOSCOPY W/BIOPSY 03/11/2004
PEG TUBE PLACED 03/11/2004
PIC LINE PLACED VIA FLUOROSCOPY 03/26/2004
PIC LINE REMOVAL 04/22/2004
ENDOSCOPY W/BIOPSY 10/22/2005
COLONOSCOPY W/BIOPSY 10/22/2005
BRONCHOSCOPY 12/22/2005
PIC LINE PLACED 01/01/05
PIC LINE REMOVED - 1/18/05
MEDICATION HISTORY
Doctors
CHILDRENS HOSPITAL OF PHILADELPHIA
ORANGE@EMAIL.CHOP.EDU
DR. REBECCA ICHORD - NEUROLOGIST
CHILDRENS HOSPITAL OF PHILADELPHIA
DR. JONATHAN MARKOWITZ - GASTROENTEROLOGIST
CHILDRENS HOSPITAL OF PHILADELPHIA
MARKOWITZJ@EMAIL.CHOP.EDU
NEW YORK, NY 10029-6574
FATHER MILD LATEX ALLERGY, HISTORY OF EXPOSURE TO FORMALIN PRODUCTS IN LIQUID SUSPENSION AND AS A POWDER
MOTHER IRRITABLE BOWEL SYNDROME, HIGH BLOOD PRESSURE CARRIER OF ED AND N.E.M.O
SISTER HEALTHY 6 YEAR OLD CARRIER OF N.E.M.O
PATERNAL GRANDFATHER ALLERGIC TO ACETONE, ACETATE, RUBBING ALCOHOL, LEMON JUICE,
STRONG PERFUMES, BEE STINGS, TALCUM POWDER, NO KNOWN FOOD ALLERGIES.
HISTORY OF EXPOSURE TO FORMALIN PRODUCTS IN LIQUID SUSPENSION AND AS A POWDER
PATERNAL GRANDMOTHER LYMPHOMA, BREAST CANCER
MATERNAL GRANDMOTHER - HIGH BLOOD PRESSURE - CARRIER OF N.E.M.O
MATERNAL NEPHEW DIED (1979) 3 ½ YRS OLD OF DEHYDRATION, GRANULOMATUS COLITIS
NOTES TO KEEP IN MIND
08/22/03 - JACK HAD A LYMPH NODE ABCESS ON HIS NECK, IT WAS TREATED WITH 2 INJECTIONS OF ROCEFIN.
09/09/03 JACK WAS GIVEN HIS CHICKEN POXS IMMUNIZATION.
ABOUT 1 ½ WEEKS LATER, WE NOTICED LESIONS AND WERE THEN DIAGNOSED WITH CHICKEN POX.
2 WEEKS LATER. HE WAS GIVEN VARICELLA ZOSTER AND PLACED ON ACYCLOVIR.
11/17/2003 11/21/2003 JACK WAS ADMITTED TO THE HASBRO CHILDRENS HOSPITAL, PROVIDENCE RI.
FOR A CONSULTATION WITH DR. NEAL LELEIKO A PEDIATRIC GASTROENTEROLOGIST FOR A SECOND
OPINION ON AN UNPROVEN DIAGNOSIS OF INTESTINAL LYMPHANGIECTASIA.
4/29/2004 LYMPHANGIECTASIA WAS RULED OUT , AFTER 2 CONSECUTIVE BLOOD TESTS 1 WEEK APART,
JACK WAS ABLE TO ACHIEVE A NORMAL ALBUMIN LEVEL ON HIS OWN WHEN HIS
NUTRITIONAL INTAKE WAS IMPROVED. WAS ALSO RULED OUT BY DR. PHIL PUTNAM THROUGH ENDOSCOPY.
CURRENT MEDICATIONS
BIAXIN
ETHAMBUTOL
RIFABUTIN
IMMODIUM
PREDNISONE
CLOTRIMOXAZOLE
BUDESONIDE
PREVACID
IN JANUARY OF 2006 WE ARE PLANNING ON JACK UNDERGOING A STEM CELL TRANSPLANT TO CURE HIS IMMUNE DEFICIENCY
STEM CELL TRANSPLANT WAS RESCHEDULED FOR MARCH 2006.
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