LOOKING FOR INFORMATION.
HAS ANY ONE BEEN DOWN THIS ROAD
DETAILS BELOW FOR MY SON KYLE
GOING FOR MRI SCAN IN JUNE
HIS CEREBRAL PALSY I THINK IS NOT THAT BAD, I COULD BE WRONG

ADMITTED                    14.9.00
TRANSFERRED             14.9.00 TO WARD 2B
READMITTED                  29.9.00
DISCHARGED                  28.10.00
DIAGNOSES               1)  PREMATURITY (34+4 WEEKS GESTATION)
                            2)  TWIN PREGNANCY
                            3)  EXOMPHALOS --(BRITISH WORD) ---OMPHALOCELE
--(AMERICAN)
                            4)  GRAM NEGATIVE SEPTICAEMIA
                            5)  PRESUMED NEONATAL MENINGITIS
                            6)  THIRD NERVE PALSY

THIS INFANT WAS BORN BY SEMI-ELECTIVE CAESAREAN SECTION AT 34 WEEKS GESTATION
BECAUSE OF DETERIORATING MATERNAL PET.
BABY GASPED AND CRIED AT BIRTH BUT SUBSEQUENTLY HAD POOR RESPIRATORY EFFORT
AND WAS THEREFORE ELECTIVELY INTUBATED AT 3 MINUTES OF AGE. EXOMPHALOS HAD
BEEN DIAGNOSED ANTENATALLY,BABY WAS THEREFORE TRANSFERRED TO THEATRE ON DAY 1
FOR SURGICAL CORRECTION.

CARDIAC ULTRASOUND ON DAY 2 SHOWED A LARGE PATENT DUCTUS ARTERIOUS BUT NO
OTHER ANOMALY.

IMMEDIATE POST-OPERATIVE COURSE WAS UNCOMPLICATED AND VENTILATION WAS
DISCONTINUED ON THE 2ND DAY OF LIFE. FULL ENTERAL FEEDING WAS ESTABLISHED ON
DAY 10.
UNFORTUNATELY, AT THE AGE OF 13 DAYS KYLE BECAME PROGRESSIVELY MORE UNWELL
WITH SIGNS OF SEPSIS. HE REQUIRED TREATMENT WITH VOLUME EXPANSION AND WAS
COMMENCED EMPIRICALLY ON BROAD SPECTRUM ANTIBIOTICS. HIS CONDITION
DETERIORATED OVER THE FOLLOWING 48 HOURS WITH DEVELOPMENT OF NECK RIGIDITY,
PYREXIA, HYPONATRAEMIA AND FLUID RETENTION,SUGGESTIVE OF MENINGITIS.
INITIAL LUMBAR PUNCTURE WAS UNSUCCESSFUL; REPEAT LUMBAR PUNCTURE 6 DAYS LATER
PRODUCED CLEAR CSF WITH RAISED PROTEIN, LOW SUGAR AND RAISED WHITE CELL COUNT
CONSISTENT WITH PARTIALLY TREATED MENINGITIS. BLOOD CULTURE GREW ENTEROBACTER
AND SUBSEQUENTLY COAGULASE NEGATIVE STAPHLOCOCCUS; NO ORGANISMS WERE EVER
ISOLATED FROM CSF. ANTIBIOTICS WERE CONTINUED UNTIL DAY 29 OF LIFE
THIS REPRESENTING A FULL 2 WEEKS COURSE OF TREATMENT FOR SUSPECTED MENINGITIS.

THROUGHOUT HIS STAY IN THE NURSERY KYLE WAS EXTREMELY QUIET. WE DID NOT
OBSERVE ANY OVERT SEIZURES, BUT HIS LETHARGY AND LACK OF SPONTANEOUS MOVEMENT
WERE A CAUSE FOR CONCERN. RIGHT THIRD NERVE PALSY WAS NOTED WHICH IS THOUGHT
TO BE EITHER AN ISOLATED CONGENITAL ANOMALY OR PERHAPS SECONDARY TO AN INFARCT
EEG WAS NORMAL, BUT CRANIAL ULTRASOUND ON 28-9-00 (14 DAYS OF LIFE) WAS
ABNORMAL WITH AN AREA OF INCREASED ECHOGENICITY THOUGHT TO BE DUE TO EITHER
CEREBRAL INFLAMMATION OR AN INFARCT.
SUBSEQUENT CT CONFIRMED THAT THIS AREA REPRESENTED AN AREA OF INFARCTION.
THERE WAS NO EVIDENCE OF INTRAVENTRICULAR HAEMORRHAGE.

KYLE WAS RE-ESTABLISHED ON FULL MILK FEEDS BY DAY 28 OF LIFE; THICKENERS WERE
ADDED IN VIEW OF VOMITING.

KYLE WAS DISCHARGED HOME ON THE 44th DAY OF LIFE WEIGHING 2.6kg WITH
ARRANGEMENTS FOR PROMPT FOLLOW-UP.

DISCHARGE MEDICATION:           CHILDREN'S VITAMIN SUPPLEMENTS
                                            NIFEREX 5 DROPS TID
FOLLOW-UP ARRANGEMENTS:     PD OUT-PATIENT CLINIC 13-11-00
                                            ORTHOPTIC AND SURGICAL REVIEW ON
THE SAME DAY
                                            THROMBOPHILIA SCREEN TO BE
ARRANGED AT 3 MONTHS


HOME LIFE -- UP TO 13 WEEKS OF AGE (VOMITED TWICE) NEEDS BURPED RATHER HEAVY
                    NO THICKENERS USED -- THESE CAUSED VOMITING -- STOPPED
DAY 45
                    WEIGHT 5kg -- APPROX. 35 oz (980ml) PER DAY IN 5 FEEDS
                    MILK WAS SMA GOLD -- NOW SMA WHITE THICKER MILK
6 MONTHS        TWIN BROTHER CALVIN DOING WELL NEARLY SITTING UP BY SELF
                    KYLE STILL SLOPING FORWARD OR ARCHING BACK , HEAD KNOW
SHOWING
                    SIGN OF MOVEMENT i.e. TRYING TO HOLD HEAD UP
                    HEARING OK
                    NOW HAS GLASSES FOR EYES -- ONE EYE GOOD OTHER JUST OK
                    NEW LEASE OF LIFE -- WHEN GLASSES ON , TRYS TO TURN HEAD
AND FOLLOW YOU , LOVE WATCHING TV..
                    WEIGHT NOW 19 lbs SAME AS BROTHER
                    HANDS ARE NOW OPENING & CLOSING REGULAR, TOUCHING FACE &
SUCKING
                    FINGERS.

OTHER FACTS TO CONSIDER
    JOANNE -- CAESAREAN COMPLICATION WAS DR HANRETTY CUT THROUGH HER BLADDER
                    URINE FLOODED INTERNAL AND OVER TWINS
    JOANNE -- LATER 3rd DAY CONTRACTED SEPTICAEMIA

CAN ANY ONE HELP , HAVE YOU BEEN IN THE SAME SITUATION
ALSO INTERESTED IN DEVELOPING A PORTABLE HBO TREATMENT UNIT, ANY IDEAS, ANY
HELP..
SEE YA SOON
MARTIN