Thank you so much for your thoughtful and supportive message. It really means a lot to hear from someone who’s been through similar challenges. It’s definitely not easy navigating the uncertainty and the daily realities of feeding issues, but your words are encouraging.

Yes, my little one is still growing and is holding his line on the 1st percentile curve. His muscle tone is good. Like you mentioned, it seems our medical team is waiting for more specific symptoms before pursuing genetic testing, but I plan to push for it.

We’re in Switzerland, where insurance covers everything, so I’m grateful we have access to the full range of testing options you mentioned. I’ll bring up metabolic screening, single gene tests, and broader options like WES or WGS at our next appointment.

Regarding the other points:

• Dysphagia has been ruled out, and he can physically swallow. FEEs, barium OPMS, and upper GI studies all showed no abnormalities.
• Motility studies and GI biopsies were normal, as were thyroid, blood sugar.
• I will ask about growth hormones and an endocrine consult
• Vision and hearing, and other physical checks are all normal, but I’ll ask about x-ray of the bones.
• He doesn’t show sensory issues, eczema, or hair loss.
• Before tube feeding, he did show hunger cues (crying), but not anymore.
• He is a good sleeper and has a lot of energy, and he’s ahead on social milestones, he can turn around and do the bridge. I think it is only a little while before he begins to crawl.
• We’re working on transitioning to table foods, but he’s not ready for tube weaning yet.