Worried about my 1 month old grandson

Jameson

New
Messages
3
Reaction score
0
Points
0
Hi, i am new to the group. My grandson was born on 12/13/14 healthy 8lb 13 oz boy. Christmas day he stopped breathing and turned blue, he was rushed by ambulance to Hasbro Children's Hospital. He was put on a venterlater, feeding tube etc for a couple of days. Spinal tap and other test's came back normal or neg. He went home and was doing ok except for showing signs of colic or reflux. A few days later stopped breathing, he recovered quickly. Cardiologist visit was normal, yesterday Gastroligist thought he had a dairy allergy so changed his formula. Today he stopped breathing again for a short time rushed to the hospital. Cat scan done no blood on his brain. EEG is scheduled for Monday. They are thinking he has Infantile Spasm, West syndrome. Very scarey for our whole family. Anyone have a similiar experience? Or advice?
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,908
Reaction score
332
Points
193
So sorry to hear about your grandson.

I would generally recommend that your family try to get as much information as possible -- don't be afraid to ask lots of questions of the neurologists, and make sure you know how to get in touch with them if more questions arise. Early detection of West Syndrome (or other epileptic syndromes) can make a difference, so it's a plus if your grandson can get prompt diagnosis and treatment by a pediatric neurologist. The EEG should help -- West Syndrome is associated with a very specific brainwave pattern. Ideally it should be a 24-hour overnight EEG to help monitor both brainwaves and any spasms if they occur.

If the diagnosis is West Syndrome, the next step would be determining a cause, since that can help determine appropriate treatment. Again, make sure to ask a lot of questions -- information can go along to way to help with coping. You will find good information about infantile spasms here: http://www.infantilespasmsinfo.org/
 

Jameson

New
Messages
3
Reaction score
0
Points
0
Thanks, preliminary results for the EEG are good. Complete results in a day or 2. They are thinking it is GERD Which is a super relief. Just praying the complete EEG is normal.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,908
Reaction score
332
Points
193
That sounds promising. I hope that GERD is the answer and that treatment is straightforward.
 
Messages
11
Reaction score
0
Points
0
My daughter had apnea spells as a baby due to to GERD. Fairly common from what I understand. She was placed on a monitor, given anti-reflux meds, and had to be held up for 30 minutes after eating. That is odd that they jumped to West Syndrome? Anyway, hopefully, it is just GERD. My daughter was taken off of her monitor after a certain period (can't recall now) of not having apnea spells. She is nearly 10 now and is a healthy kid. Good luck to you and your sweet grandbaby.
 
Top