Brain Stem Related Apnea

B.,

Welcome to mamapedia.

I don't know of any doctor that would give up on an infant. Sounds like you need to go to Children's Hospital and have him seen there.

My youngest son didn't have apnea - he flat lined on me when he was 6 hours old. I was a basket case. I understand the nerves you and his parents are going through.

I've never heard of awake apnea.

Children's Hospital or St. Jude's.
Good luck.

This is scary. I would go to Children's Hospital and have them evaluate my child.

I would tell the doctor's who are giving up something not so nice. I don't think I've ever heard of a doctor saying "we're done" with an infant. Unless there's something else you aren't telling us??

Make sure you bring/take all of the records, pregnancy and birth so the doctors can review. Any ultra sounds, blood tests, anything that can help them get to the bottom of this.

There are infant sleep studies that can be done (while the baby is awake or sleeping). a pediatric pulmonologist (lungs, breathing) or neurologist (brain) should be consulted.

Do not give up. Any doctor that says there's a brain malformation but doesn't know what to do and is going to send the baby home is not a good resource, to say the least.

Call any Children's Hospital. Have your son call his insurance company and explain the situation. Keep calling until someone will evaluate the baby.

And immediately, have your son and the baby's mother start keeping a daily journal. Keep one page per day in a notebook, and write down nap times, any apnea or seizure episodes, and what was happening at the time (had the baby just eaten, where was the baby, what sounds or tv or lights were on, and the exact time of day and length of the episode). A specialist will need this.

Get all the medical records from the hospitalizations. Request doctor's notes, test results, medications given, etc.

Start filing records very logically and orderly.

yes take the child to a childrens hospital. and get a new dr. a dr thats giving up on a infant should be replaced asap/

Advocate Christ Hospital and Advocate Luthern General hospital have wonderful children's hospitals. Have the doctors done any testing like an EEG, CT scan, MRI? Is he actually having seizures instead? Encourage your son and the baby's mom to see specialists (neurologist) at a children's hospital.

If you are in Joliet, find a university hospital like Northwestern or UW Health in Madison, WI. Madison has children's hospital right along side of it. World class! Good luck and prayers for you!

And just to reassure you, he'll likely grow out of it.

Yes, I've seen this. Ask for a referral to a pedi pulmonologist. One can see you in patient. Also ask for a sleep study to document the apnea. It may be that baby needs a ventilator until he out grows the apnea.

If your doctor insists on sending you home, ask for a pulse ox monitor. This monitor will alert you to any drop in baby's oxygen level, meaning an apneic spell, so you can intervene. In the meantime, everyone should invest in an infant cpr class.

Also, you need more info on this brain malformation. Is this something progressive, degenerative, or incompatible with life? Are they "giving up" in terms of sending baby home with comfort care only or with hospice? Or do they just not know what the problem is? If they don't know, it's time to request consults from a pedi neurologist, who can order an eeg and an MRI to actually look at the brain.

If you're not already at a children's specialty hospital, I'd sure request to be transferred to one.

Best of luck.