Thank you... that is so kind of you. I was thinking about your notes last night.
It really means a lot to me.. When you go through these things it is so hard, and it is a joy to be able to help anyone else, because if you can save anyone a little pain, it helps relieve everyone.

I also re read your note about already trying 3 grams. That for my risk tolerance is too slow and too little. There was a time when my son had gained 70 lbs.. and they didn't change his dosage, and somehow facts did not help, and he got really sick. So, he was underdosed. We finally got to move it 5 grams.. then, see if he has a reaction.. for 1 month or maybe 2.. then move it 5 more grams. Later on, because of a move to a new city, a very senior doctor just said, they were wrong. It seems like being with a doctor who is afraid of the IVIG medicine is like being with a surgeon who is afraid of the scalpel. I have a lot of empathy for the fact that

I was trying to think about a framework.
I think finding a doctor who is willing to be open minded to 1. information - what are best practices 2. risk/reward framework and 3. a good match for your personal risk profile is helpful. I also thought it might help that there is more data about the dosages for specific conditions. That is, the protocol for inflammation is often Other guidance I got was to ask questions like 1. How we will know it is working? How long would you give it to work.. at the end of the day, it seems like you have tried so much and that itself is exhausting and overwhelming. Trying to convince someone that you need help is hard. .. and here you are so close to the finish line and you're on the medicine. I would push hard to change or get to a therapeutic dosage. I understand that is easy to say, and making it happen it harder. It seems like you have done all the reasonable things and maybe it's time to move on.
It's not just you...

One more thing that helped me was from a Mayo talk on rare childhood diseases, and the woman who spoke and the team were amazing. They referenced this link David Cameron who had a son with a rare disease, and it took 7 years to get a diagnosis for most people. Here is this very powerful person who has the access the best of medicine and he has empathy for the doctors, and yet, his son was still suffering. What I take away is this.. there is a not some huge data base of pushing a button, and so try someone else who might be more open to working with you to get the clinical symptoms managed

I think of all the parents around the world going through what we did — not only the anguish of seeing their child suffering, but also the frustration at the lack of diagnoses, treatments and knowledge about what has happened and why. In many cases the doctor is unlikely to have seen a patient with the same condition before. They are left to rely on intuition and antiquated tests to determine which of the 7,000 rare diseases may be affecting the child.
https://www.linkedin.com/pulse/what-i-learnt-from-our-sons-rare-disease-david-cameron/
Even the most experienced doctors can't predict your specific outcome, and it is exhausting trying to convince someone. As a personal note, I had to put my son on IVIG when he was young, and I was too risk averse, and I needed to partner with a doctor who was more clear that we're just guessing. My son had a life changing experience for the better. He grew 3 inches in 3 months and started reading entire books. His entire system came back on line and he was able to hit milestones. Now, of course no doctor would ever promise IVIG cures dyslexia, and you will get taller too, but it happened and everyone was happy. It turns out the other doctors were clinically good, but one had seen bad outcomes with young kids being traumatized. He was trying to protect my son from that.. I would say even the best intentions .. like trying to protect your kidneys can lead to bad outcomes.

Just to add to the other comments here.. We also had to do a brand switch. We found out.. that A+ blood in our case was reacting, to the IVIG, and eventually led to hemolytic anemia. I asked the doctor and they said they don't test blood type, but another brand did more A+ antibody screening. I moved from Gamunex C to Privigen. I was getting migranes during the IVIG as my dose increased. The doctor said never heard of it.. but, was willing to try. I think the bottom line is in the realm of rare diseases, you are going to rely on more trial and error and ofen the patients have more experience. We also found the primary immune foundation helpful.. that's where I found our doctor who convinced me to go on it. She was giving a talk at a for IDF at a Marriott on a Saturday.. Anything you can do to feel more connected to that community could be helpful. Again, your doing do much. It's very brave to post and to take the first step and put out there that you don't know what you're doing. Hang in there.