Okay, so I've gone back and read and re-read everything, and taken some good notes for my Ped. He already thinks I read too much (as if!) and I think I'll need to book a double appointment ASAP.
I think the lead on eosinophilic is very interesting, it rang a cord with me.
Here is my mental to-do list (just thinking out loud):
1. Ask for metabolic panels (long chain especially).
2. Look at Tonsils
3. Ask about Eosinophilic idea
4. Food allergies, prick test
5. Revisit silent reflux
And I've been thinking about my DD Luna - she had a whole host of really confounding abnormalities. Based on PHYSICAL findings alone, she was diagnosed with spondylothoracic dysplasia
- we never recieved back her genetic testing on the DLL3 gene. It was being done for free by the dysplasia team in Zurich, so I didn't really press the issue.
Her diagnosis always seemed a little off - her skeletal findings were in line with STD, but she had a host of other things outside typical STD findings. After reading some of the info on the metabolic issues, I can't help but wonder if there was something else in play. We do still have her tissue samples for further testing if we need - I'm not sure we really want to go there, but if it would shed some light on Leif's situation it might be worth it.
Anyways, I'm really worried about Leif, and so is DH. He is just so fussy and unhappy ALL THE TIME, won't sleep, won't eat, and seems miserable. I mean, he can be happy some of the time, but mostly it is very difficult to care for him. I'm not sure if he is just "high needs" or if something else is going on...I'll just keep pressing forward and see where that gets us.
I can't thank everyone enough! I've read every bit and it feels really good to know that people would give us their time.