I know some of you have seen this video when I sent it out last year, asking for your help. Unfortunately he is still having the spells, despite a lengthy stay in the hospital to get to the bottom of them.
Here is info about Ashton from December of 2007...
MRI in May 2007 that shows mild PVL.
Ph probe yesterday....not sure what yet. Had one about 9months ago
that showed reflux. duh
EEG (2 times) - they were abnormal but no seizure activity
*they are saying seizures (some of them) from me describing the
spells. However all docs that have seen Ashton have a spell have said
no it isn't a seizure. (he did them in ICU in Feb06)
Echo 8 weeks ago was fine. They discharged him. I have however heard
that echos do not show every heart problem there could be.
Last lung xray showed thickening of bronchial walls.
Born june 10-05 at 24 weeks 1.9lbs.
G tube placed Oct05
Spells started Nov05
Dec05 discontinued domperidone due to severe EP effects.
Jan06 home from NICU
4 days later back in b/c had 7 spells at home
Ended up in ICU on vent. Spells continued on vent.
Sats go to 20s, 30s and heart rate drops.
GJ tube placed and spells went away until he had two in July06(same
day), April07, June07 and then Nov07
Here is the most recent info provided by Shannon (sent to me on Oct. 20, 2008):
Okay long story short, we know that they are not seizures. He has had four eegs all with no seizure activity. He has had full cardiac workups showing nothing there at all either. I do have to say though that I have had two surgeons that have worked on him come out and say that he is shunting. No holes are seen/found.
If on a monitor while this is happening his oxygen sats will read anywhere from 20-40. His heart rate does not change MOST times.
His recent stay in ICU on a vent he had 11 of these episodes while sedated. When they try to bag him they either can't or it is VERY hard to. The doctor at this stay automatically thought of pulmonary hypertension. Echo was fine.
He has had a CT of his lungs that show not much more than BPD and blocked areas most likely from micro aspirations.
We thought they may be related to reflux however the ph probe and oxygen study showed no correlation between reflux and desats.
He frequently as well as desats to 60s, 70s and 80s. Not nearly as scary as the one shown.
This spell on video, just before it he was about to take a poop. Which made me think cardiac as well. However I have seen these spells happen out of nowhere with no warning.
Sleep study showed sleep apnea. Obstrutive, hypopneas and central. CO2 levels are higher than normal (about 70). The doctors told me that oxygen is basically toxic to him.
Scope showed airway was fine. Adenoids and tonsils are fine.
Also, Ashton did have a fundo in Feb. 2008 and now has a g tube instead of a gj.
Thanks to everyone in advance. Anonymous posts are completely allowed, as I am sure those in the medical field do not want their names used since Ashton is not their patient and they do not have full access to records.
WARNING... THE VIDEO IS VERY EMOTIONALLY HARD TO WATCH.