I'm so sorry you are going through this with Alexander. I can't imagine the terror and anxiety you feel. I'm glad the new formula is working and that this doctor seems to be producing some positive results. Metabolic disorders are awful, especially for babies. And formulas, though they try hard, cause so much gas and problems.
I would definitely seek a second confirming opinion on his condition from a good medical center, even if he seems well. And maybe even another after that. You are totally justified in asking for full and complete testing after what happened to your other children, and they can make the paperwork work so medicaid or whatever insurance pays for it. The main thing is to go through with the testing even if the symptoms seem to go away. Otherwise, you'll just worry and that won't be good for you or Alex.
I understand your potential total anger at considering that your other children's problems could be the same thing and their deaths have been prevented with simple changes. I would be going through the roof at the sheer incompetance and lack of value of human life, especially innocent babies. I hope it helps to know I sympathize and though I don't know exactly I feel your pain and anger and hurt and if I could take it away, I would in a heartbeat.
I have a really good feeling about Alex and this doc, from what you have explained and him getting so much better with the new formula and hopefully with the incline. My son had high pitched shirll crying and ended up having epilepsy and I didn't know it. I often wondered if those times were seizures and not colic. I would pay close attention to those cries (like how can you ignore them;)) and if he keeps crying in such a manner, confront his doctor about it and the possibility of other problems too.
Those formulas just make so much gas usually, its hard to burp enough and you don't want them to throw up if they are throwing up, so its just really hard to know how bad it is. I hope they can give him some good medicine for it and stop the spasms.
Please know I'm praying for you both.
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn