I really need help. I know SOMEONE knows what is going on with my son. We have seen countless doctors about these "spells" however no answers. We even spent 88 days inpatient last year at a TOP hospital trying to get to the bottom of them but to no avail. I know that someone out there has seen this before, I just need to find them.
We have has EEGs, EKGs, contrast bubble study, echos, MRIs, CT of chest, ph probes, botox in saliva glands.....all with no answers.
When my son does these episodes his sats we have seen as low as 11. Oxygen doesn't help. He also has done them while intubated/sedated.