Just got home from bringing Ryder to his pediatrician. That was one of the most difficult appointments I have brought him to (after hearing about his 1st abnormal MRI). Maybe because I had my hopes up-- but let me backtrack a month & fill you in....
Ryder started to not swallow all the sudden a few weeks ago. It was strange, he was drooling like crazy, trying to keep his mouth closed and not swallowing his saliva! After several hours of not swallowing at all, he started swallowing again--- very bizarre! Well in the last few weeks he has now done the same thing about 5 different times or so-- for hours. I have had him sleep with us a few times when he has done it at night because I'm scared he will aspirate or choke. During these no swallowing episodes we have tried giving him his favorite--marshmallows-- so he'd open his mouth, tickling him while he was facing down, massaging his throat to stimulate him to swallow, but nothing worked! I end up forcing his mouth open to drain all the saliva that pools (enough to soak a hand towel). Along with the whole swallowing issue, Ryder has been throwing up (at least 1x a week this month), clingy & fussy at times, and continues to have unresolved GI issues and a BM blockage that he struggles with daily(a whole other long story we are trying to correct!) He hasn't been sleeping well and his affect has just been BLAH pretty much (which I'm thinking is related to GI.) So I brought him to the doctor in hopes that he had an ear infection, or strep or ANYTHING else to explain this new swallowing issue. (Weird to wish your kid had strep huh?) That's where I got my hopes up, even though I knew in my heart it was a long shot.
Ryder is perfectly healthy (as in clear of a virus/bacteria/allergies). The doctor stated what I already knew--it is just harder to hear it out loud I guess.
The disease is progressing.....
I'm bringing him to the neuro tomorrow. The doctor advised me to discuss with Les how pro-active and aggressive we want to be to treat the symptoms that arise--before they arise if possible. Ryder's pediatrician is sooo wonderful and I appreciate her honesty and support. The neuro and GI will talk to me tomorrow about some choices and what other symptoms we may see in the future. This all just sucks and it is hard to have to think about--ugh.
