Special Needs

Newborn epilepsy

Longer story short two days after LO was born she was transferred to a speciality hospital due to turning blue and needing assistance to begin breathing again. After any tests an EEG showed she had one epileptic episode and was put on phenobarbital. That stopped all seizures and blue spells but a new problem occurred. LO developed a type of apnea where when she is in a deep sleep her oxygen level drops. This did not occur until being put on phenobarbital. She has to have oxygen on while sleeping and is on a monitor to watch for drops in her oxygen level. Has anyone else experience anything similar with their children?

Re: Newborn epilepsy

  • She did not show any signs of low oxygen while on monitors for the four days prior to starting meds. They did tons of tests to rule out heart and ling issues like EKG, echo, chest x ray, MRI and others
  • I have no advice, just wanted to say I'm sorry your going through this and hang in there momma
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  • Thanks guys! They still can't really tell us what caused everything. Especially since these issues arise more often with preemies and she was born at almost 41 weeks. We are thinking maybe there was a chance our dates were off by a few weeks but I am pretty positive about last period and date of conception. Oh well... hopefully things will keep looking up! :)
  • My son was also put on phenobarb right after he was born for seizures and after about 24 hours on the meds his oxygen sats started dropping periodically. I'm not sure if there's a correlation here, but it's possible that the meds are causing the low oxygen. Maybe ask about different types of meds you could try. DS got switched to Keppra and the problems went away. He was also a full-term baby. 
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  • My son wan on phenobarb right after birth and had to be intubated.  It is my understanding that the effects on respiration get better as they begin to tolerate the drug.  I hope this gets better soon!
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

  • Just got word from Dr. That we will now be weaning her off the phenobarb and check an EEG in two months. Of everything checks out no more meds!!! Otherwise we will be switching to Keppra. Thanks for sharing your stories with me!
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