In the NICU, he manifested poor respiratory effort and there
was intermittent bradycardia. He was intubated. A cranial ultrasound showed extensive
intracranial hemorrhage with a right-to-left midline shift. Platelet count was 5,000 and hemoglobin 8.1. PT was 19.6 (INR 1.9), PTT 36.4 and
fibrinogen 69. A cranial CT scan showed
a very large extra-axial hemorrhage in
the right hemicranium with some evidence of entrapment of the left lateral ventricle and right temporal horn. With blood products, including platelet
transfusion, the platelet count rose to 129,000. PT was 15.1 (INR 1.4), PTT 32 and fibrinogen
321.
Neurosurgery, in view of the massive hemorrhage with midline
shift, which did produce anisocoria, and the coagulopathy declined
intervention. There was initial discussion
regarding whether or not to otherwise limit care. The mother decided to proceed with medical management.
Seizures were treated with levetiracetam. An MRI
showed again extensive right hemisphere extra-axial hemorrhage with midline
shift, uncal herniation and downward transtentorial herniation. There was extensive edema and restricted
diffusion in the right cerebral hemisphere and, to a lesser extent, in the left
cerebral hemisphere. MRA showed
considerable mass effect on the circle of Willis with leftward shift. Initially, the neonate was flaccid.
Subsequently, the neonate became more active. Respiratory assistance ceased to be
necessary. No motor asymmetry was
evident. He fed orally, but did so
taking inadequate intake. A gastrostomy
was placed. Anisocoria was still
present. The etiology of his thrombocytopenia
and coagulopathy was deemed unclear.
Hematology consultation could not define this as neonatal alloimmune
thrombocytopenia. Maternal antiplatelet
antibody testing was negative. He was discharged from the newborn
hospitalization at 33 days of age.
The most recent cerebral imaging study, a cranial CT, showed encephalomalacia
involving the majority of the right cerebral hemisphere. There was a relatively
high attenuation seen predominantly along the peripheral aspect of
encephalomalacia, relating to evolving residual blood products. Mass effect had
improved. There was no evidence for new or progressive hemorrhage. There was an
interval decrease in the size of the lateral ventricles compared to the most
recent MRI done a month earlier. There was mild to moderate ex vacuo dilation
of the right lateral ventricle and residual dilation of the temporal horn of
the left lateral ventricle.
At 2 ½ months of age he will breastfeed by day, but receives
gastrostomy feeding overnight. Visual
attentiveness has not been established. He is perceived as utilizing his extremities
symmetrically, but examination shows slightly increased tone and reflexes on
the left. Therapy with levetiracetam
continues with no seizures appreciated.
At 4 months of age (he has moved out of state): He is doing ok. Growing slowly but growing!! Lots is going on. We are doing PT 2x a week because he is a bit delayed. We will hopefully find out on 4/11 what he can see through those beautiful eyes of his. We saw craniofacial doctor last week and was told we may need to do a surgery to fix his bones because he has a unique form of craniosynostosis. He wants to wait two more months to officially decide but he says he is pretty sure he will need the surgery. (Mama is not looking forward to that) We still haven't been able to see the neurologist. Which in a way I'm ok with that but then I'm also upset because I would like to wean him off the diazepam but can't see a doctor til June. He doesn't have much twitching anymore so I would like to wean him so that he doesn't have to be too dependent on it.
ReplyDeleteHe still hasn't smiled so we are patiently waiting for that day to come and for him to look at me purposefully! But I have hope it will come one day!! He is eating great and have speech help with it! We are teaching him to touch toys purposefully which is going great but lots of work ahead!
At 20 months of age, he was admitted for status epilepticus. His levetiracetam maintenance dosage was increased,
ReplyDelete"He is nonverbal. He coos and grunts. He is right-hand dominant. He can grab toys purposefully and play with them. He will not grab with his left hand, unless the right arm is constrained. He is able to Army crawl in a circle and rolls a lot.”
MRI showed interval evolution of the previously seen right cerebral hemorrhagic infarct with progression of cystic
encephalomalacia in the right cerebral hemisphere and secondary ex vacuo ventricular dilatation.
EEG showed continuous focal attenuation in the right hemisphere, maximal in the right frontal and temporal regions, occasional central midline sharps. and asymmetric sleep architecture.