I have felt so alone...I've been feeling so alone, so glad I found this thread...I wish all yere kids were healthy...and mine too...I thought I was the only one with a sick baby...certainly I am not...I planned a UC til my baby went breech at 365 weeks, my 4th child, I expected him to be healthy...
My son is 6 mo's old and completely undiagnosed. He was born at 37 weeks with severe hypotonia, central apnea, bilateral parietal subdural hematomas (not from birth cause unknown), he developed hypertension at 3 weeks, RSV at 4 (bought him an extra month in NICU on ventilator and O2) and then seizures at 2 months, maybe sooner, diagnosed seizures at 2 mo's. Also GERD, asymptomatic--non puker. Feeding issues. NG tube for first 8 weeks. Then bottlefed ebm, very slow, poor uncoordinated suck.
MRI's at birth and 3 weeks showed decreased gyral and sulcal development appropriate for 32-34wk development, possible demyelination at 3 wks. Possible nueronal migration disorder, genetic testing normal, all metabolic testing normal, all organ systems normal.
Went to chiro, baby got way better, almost was holding up head before 5 months, starting to roll over, etc..
Pharmacist made mistake, baby had major tegretol overdose mid-July. It took 3 hours and Kael lost suck and swallow reflexes and has been having pain issues, taking morphine and valium for inconsolable horrid pain. Dr's said effects would be temporary but no improvement yet. Exclusively NG tube fed, will maybe put in Gtube soon, baby chokes and aspirates on own saliva all the time, but is learning to cough some, and often brings up big globs out of his lungs.
Recent heart troubles, the monitor was high heart alarming (over 220bpm) for many hours, only slowed with valium, may be seizure related, unknown..I took him to the ER and they said he was beyond their scope and sent us home. The HMO has been jacking us around about hospitalization happening for 6 weeks. Now the seizures are controlled. But everythign else is falling apart.
Hospitalization soon, awaiting results from specialist regarding the MRI films.
Kael was discharged from NICU because we wanted him home, trained for NG feedings, apnea monitor, etc. Admitted to hospice program at NICU d/c his prognosis is unknown but considered poor at best.
I'm angry about the tegretol overdose. Maybe these problems would have happened anyway, but before the OD he was doing GREAT and now he is in pain all the time and totally miserable. Negligence. The pharmacist forgot to shake the bottle and the medicine falls to the bottom, dispensed syrup onnly and dosage was determined on blood levels, so when he finally got real medication it was FIVE times higher than he should have ever had!!! They go to school for 6 years to learn to shake a bottle, and that moron just forgot or something...My son is paying with his life...Its not fair!
Other than the overdose, no explanation for any of his problems. All test results normal, except baby has a little anemia. Renal tests normal, hypertension totally unexplained. Everything unexplained. All the specialists are 100% stumped.
I am eagerly awaiting the results of the MRI's from the specialist in Chicago. he emailed me the other day and told me that my son's case is 'complicated'