You live somewhere nice and warm. YAY!!!
Good that you have air conditioning...
I'm not familiar with proper blood sugar amounts for your son's age, but I assume it was fine if it wasn't looked into further at that appt. However, as you say, he did not exhibit the same clamminess during that reading. This is sometimes the exact reason for temporarily needing a glucose meter to track at home. Strategically. Just ask what intervals your son's dr. would prefer. It may just be when symptoms show (in which you'll want to record how long since last feeding, his appearance, behaviour). Or may be more involved like after naps, before and/after each feed (and maybe 1-2hr after). You may even need to document how much formula is consumed, nursing length, or even weigh wet diapers to calculate fluid loss (if peeing too much). Not as scientific as if in a hospital setting, but will give your drs. a glimpse if further investigation is needed...
But what strikes me the most in your last post is that the powdered version of the formula makes your son projectile vomit. That is NEVER a good thing. So it should be considered a huge red flag. Is your Metabolic/Genetics specialist aware of this?!!!
My concern would be if all this is, in the end, absolutely not fructose driven, then there is another component bothering your son. As in an allergy that has a potential to cause respiratory distress. Please don't worry. It is just a thought. But the reason I suggest it a possibility (to rule out), is that if fructose is not lowering his blood sugar (but hypo symptoms are confirmed by the meter), then maybe an allergic reaction to an ingredient is. And anything (ingredient/food) that can do something like that metabolically, is an issue. Some allergies are quickly discovered, others take time to progress. But at some point, the body makes the issue obvious. And progressively more so. If this is the case, it may explain why you're just clearly seeing the severity now. Or perhaps only now in conjunction with illness, as the system is more taxed.
Or, it's not that... and the formula has some HFI issue.
Curiously though... if you will be comparing labels and website info, also check into the difference between the powdered version vs the liquid. And then compare what the hospital was using (if your son was fine on it). And all those to the website to make sure what you see on the cans (powder or liquid), match. You'll want to know what is different in the powder and liquid form. Clue #1. Then find out what could possibly make lesser of a reaction in the liquid form. Quality control would suggest that the ingredients should be the same in both powder or liquid, but they are processed differently as they are in two different forms. So who knows what is different. Maybe a preservative? Sometimes the devil is in the details... and only hindsight brings the most clarity.
But good news is that your son has a clear, pronounced reaction to the powdered variation. So you avoid. How smart his little body is!! Very strong signal so mom knows not to use it. What a little sweetie...
Now, if you really want to dig deep, you could also call the toll free number on the product to ask if any formula changes (ingredient changes) have recently been made. Or...here in Canada, I can just go to our neighbourhood pharmacist, politely ask for this type of help, and they will call the manufacturer on my behalf (and ask specific drug/ingredient "allergy" avoidance type questions -or- get latest in-depth medical style product ingredient info). For free. Maybe worth an ask if same in your area?
Truthfully, at this point, I'm not sure if you can even definitively tell if your son truly, truly tolerated that formula in the hospital. If he was admitted extremely ill (?) then anything dramatically less extreme (and appearing stable on the formula) would have been a "success" compared to all the other severe metabolic issues that needed to be stabilized at the time. And perhaps this issue was hidden. Until over time...after everything else settled... this started showing more prominent an issue. But was always there. Just too much other "noise" drowned it out till now. Perhaps it'll be discovered that it was not that truly tolerated in the first place (for HFI or non-HFI reasons). Just initially appeared so, compared to the extreme situation of a critical infant.
And, if after 2mo removed from hospitalization (and metabolic crisis), if your son's liver enzymes etc have healed and show as normal, why not the reflux (if he is still needing his wedge/sling)? Unless he is still being irritated. Or... there was some underlying tenderness or damage to his diaphragm that just needs more time to mature/heal. I don't know. But it must be delaying healing...
So I would question:
* Why the projectile vomiting over the "safe" powdered formula.
* Why the reflux, fussiness & possible hypo symptoms on the liquid formula.
Symptoms may be more clear if your son is in fact also under the weather (and the body can't hide it or cope as easily). It's a stressor. Everything shows more under stress. But because you are also breast feeding, I'm sure you're providing great added protection (along with your immune system) to help your son cope. Try and rest, eat and drink lots when you can. Hang in there. You're doing a great job, mom.
Wonder if the formula ends up being the culprit.
That powdered version... it might have an important clue.
