Urgent help needed for a sweet boy!!

[KJKK8437]

The website mentioned several kinds of apnea, including obstructive apnea. Portions of the video did look like obstructed airway to me (and I mean physiologically obstructed, not trach blockage). If that is true -- isn't that something the doctors could do something about?

I have no idea of there is a connection at all, but with my son's upper airway obstruction (his tongue occluded his airway), we had a bigger problem with CO2 retention (too high) then we did with in adequate oxygen (although when he had a spell, we lost O2 as well).

Having said all this -- there is obviously more to it than that. My son never had episodes that looked like that. Without any medical background other than what I learned caring for my family, I have to agree with Cindy. Do infantile spasms report on an EEG? I know that is a very hard to diagnose seizure disorder. I'm not aware of lack of breathing that goes with it, but maybe the breathing and the "episode" are not exactly the same. Maybe the episode just triggers the apnea or the airway obstruction.

I hope this poor child finds answers.

[bradensmom]

I too immediately thought seizure because that's what Braden does with one type of his seizures. Mom definitely needs an ambu bag to give rescue breaths to try to bring him around much quicker. It was very distressing to watch. I really feel for that mom. I felt like I was watching a child die right in front of my eyes. I wanted to jump through the screen and help.
Amy

[alizesmom]

Just a thought but that makes me think of Ciara when she has respiratory problems secondary to damage from aspiration of saliva. Has he has a swallow study? Karen

[kshell]

I posted on the site directly too. I wonder how in depth they looked into pulmonary hypertension. Natalie's echo never pointed to PPH but they treated her clinically. O2 never made a big difference with her, it was the Viagra that helped. Her cardiologist explained that Natalie's blue spells were actually from her pulmanary hypertension. She would literally clamp down and not be able to move any air. In the hospital they would interchange the words bronchospasm and pph spell. The reason that I am curious about the pph is that a lung xray showed thickening of the bronchial walls. This is an indication of pph. I really hope this mom can find some answers. It is clear she is at the end of her rope.

Karen

[destinyandmiracles]

Hi everyone, thanks for the thoughts on this. I really don't know what is going on with Ashton and I don't know where else to go for help. I am beyond frustrated and cannot believe that no one is doing anything about what is happening.

Any other thoughts would be great!

[Gretchen(Celia's mom)]

Destiny, I am so glad you came here and joined!! These ladies(and a few gents) are great with support on alot of different medical things!!! I am still hoping SOMEONE will see Ashton's episodes and know what they are!!!!!