So....
I will admit, I'm not sure how much I've discussed/complained here about Aine's breathing, snoring, coughing, and crying. But.... I will say I just got plain fed up with it when Liam started crying & hid in his room because I couldn't get her to stop the cycle the other day. For those that haven't seen it - It goes something like this. She will start to cough (for some unknown reason), which will make her start to cry/whine, which in turn makes her start coughing again, which then makes her either fart or poop. Since the last is such a surprise (and probably doesn't feel too good) she starts to cry again, which causes the whole cycle to start over again.
Now, she has GERD on top of all of this, which makes us believe that when she whines/cries/coughes stomach acid is allowed to "splash" through her nissan, which would cause anyone pain (leading us to believe this is why she can't stop crying). Poor little thing.
SO... After Many "discussions" and thought - I pushed through my idea that maybe the food could be causing some of this problem. (Let me backtrack a little bit). She Also has this awful congestion that just never goes away. She is ALWAYS congested, but no matter what I do it won't go away. Suctioning, lavasing, misting, steaming, and the list goes on - it Never goes away. So... moving foward -- if you are sick & you eat dairy, you feel stuffy. Hmmmmm..... Milk-based formula - stuffy, Breastmilk - stuffy, TPN - not so bad. There's a place to start.
So... With the approval to move ahead from the Gen Ped & the Cardiologist, we started Aine on a soy based formula. She seems to like it so far. It's cleaner, it smells better, it disolves in the bottle better, and she doesn't seem to be as crabby. It's only been since this afternoon, so I'm gonna say I'm not going ot count my ducks yet - but I am hoping for a really really good outcome.
My hope??? No more congestion = controlled coughing, Controlled coughing = less GERD symptoms, Less GERD sysmptoms = less sore throat, less sore throat = more smiles. Oh yeah, and the gas - the gas is already better. I knew for the first time tonight that she passed gas instead of wondering if I have to change yet another diaper!
1 comment:
Nicole, I just stopped by from the comment you left on my blog (A Trip to Holland) about the Pinterest Challenge. I was reading this post and thought, "Oh boy, this sounds really familiar." Both of my heart babies were also diagnosed with metabolic disorders. Metabolics is a relatively new field of medicine, and it can be hard to find a metabolic specialist, but if you can they are worth their weight in gold. My eight year old's form of mitochondrial disease is mild enough that the symptoms didn't raise a red flag for anyone until her baby sister was diagnosed with a much more severe form. But...digestive issues, GERD that just won't quit, weird allergy-ish symptoms, and low muscle tone can all be signs of metabolic disorders. Our specialist tells us that the majority of his patients are teens, because they have been misdiagnosed for years. He has a theory that many heart patients actually have underlying metabolic syndromes that caused their heart defects during prenatal development. Anyway, I'm sorry for the long comment, I don't want to give you anything else to worry about, but it really might be worth looking into. Please get in touch with me if you have any questions.
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