The last 5 months have been pretty difficult ones. As I reported previously, the twins spent most of November, December, and January plagued by infection after infection. It was only recently that I realized that we had become pretty lax in making sure that we were truly following the healing protocol and giving enough time at each new step.
Today we had our third appointment with our new doc. Dr. Chris is actually a neurological chiropractor who we began consulting in order to rule out any subclinical or subtle neurological explanation for why LittleM cannot swallow. Even after releasing her posterior tongue-tie (which was very severe) this kid still cannot swallow without washing her food down with a large gulp of water. Just image how full she gets this way – on water – not food. It is definitely a problem. It is this reason that she still has to drink most of her nutrition.
Dr. Chris is literally the first person I have found who can truly carry a conversation about FPIES in relation to the immune system in relation to the respiratory involvement, in relation to the neurological involvement… This doctor has been dealing with this issue on a daily basis from a holistic approach long before he met us. This is SO refreshing!
Here is the plan:
Dr. Chris is ordering a number of tests. He is looking at things that have not been looked at like thyroid function, ANA, C-Reactive Protein, Cortisol, and other things as well. Most reassuring is that he is listening to EVERYTHING I am telling me, assuming that I am telling the truth and trying to determine how it all fits together.
We have always said, “These things are a piece of the puzzle, and our doctors don’t even admit that there IS a puzzle.” It is pretty shocking that we have found this kind of medical collaboration with a chiropractor, but hey, I’ll take it!
Dr. Chris wants us to further restrict the diet until there is significant healing. He is thinking that we may see enough healing in a matter of months to THINK about starting food trials again. As of now, we are not to introduce any new foods (except avocado).
We are adding a supplement that is designed to heal the gut lining. For the first 2 weeks we are to remove all other supplements including probiotics (Dr. Chris explains that the probiotics can be leaking from the damaged gut lining and antibodies may be produced to those as well).
Dr. Chris is very humble. He repeatedly tells me that he doesn’t know everything and points out things that are “his opinion.” Today he actually told me that he is not 100% sure of what we SHOULD do, but he is extremely confident of what we SHOULD NOT do.
To that end he informed me that there may come a time when we want to consult with an immunologist that he works with in North Carolina. This man doesn’t see patients. He consults with doctors. He would take the history and labs and then actually do research. He is over $300 per hour! It may or may not come to it, but WOW this is something new!
Dr. Chris advised us that while trying facial release therapy may be in order to treat LittleM’s newly discovered lip tie, he doesn’t recommend that we give it very long. He feels that it is imperative to get this resolved as soon as possible. After trying to simulate the effect of a major lip-tie in my own mouth and then trying to chew and swallow, I am inclined to schedule the surgery as soon as we can.
LittleR also has multiple lip ties off to the side of his mouth on both sides, but I am not sure if this is restricting his ability or not. I am assuming (simply by the fact that it takes him so long to eat) that it is.
The main message that Dr. Chris conveyed to me is that we are only in the infantile stages of “attacking” this condition. He warned me that this was going to be a long road, and that there were many issues going on right now that we can’t even THINK about addressing because with the immune system in the state it is in, these issues would not remain resolved.
My favorite thing that he said (only since I KNOW it to be true and people think I am over-reacting), is that the twins have NEVER been “immune-neutral” in their lives.