I will tell you a little more about Crystal's experience: Everyone around me including her therapists would
always comment, "Oh she still has that darn cold" or "She's got another cold again, already,
poor thing" and I would always get irritated with them because I had explained it I know 20 times that it
WAS NOT a cold, it was just excess secretions that had developed into mucus that were sitting on her voice
box. But it was as though they didn't believe me or think I knew what I was talking about. Crystal's
neurologist was fairly in tune with updated treatments for children with SMA, although he didn't agree with
the amino acid diet, he did agree that it would do absolutely no good to practice using CPT, antibiotics or
even suctioning devices. As far as CPT and antibiotics, he said they would do no good because the problem is
not in the lungs. I argued with him for a while, because at home I could here her lungs rattling, but after
several visits to Crystal's pediatrician and him saying that the rattling is just vibrating and sounding like
it is in the lungs but it is actually upper respiratory, I finally started to believe him, but still he
offered no treatment for it and I just couldn't live with that because as I had said earlier it was really
interfering with her: eating, swallowing issues, sleeping, I mean the poor girl would cough these little
chuckle coughs for an hour straight sometimes and she constantly had a runny nose and worst of all it was
making it difficult for her to breath. So I experimented to no end on it, first of all when I took her off
meat and milk, her secretions did seem to be easier to manage, but they also seemed to be triggered by getting
out in the cold so I have her weather tolerances down to a degree. When it is below 40 degrees, she wears a
scarf covering her nose and mouth so she won't breath in the cold air when I am transporting but I don't let
her go out and play until it is at least 55 degrees or higher. That helped a lot too, but one little mess up
and she was back to coughing and once she got it, it was impossible to get rid of. I had always heard that
some of the others were using acidophilus but hadn't followed through with it because I didn't really
understand all the whys and whats about it, but when I got an E-mail from a trusted SMA Mom who said that it
would help with Crystal's secretions, I was at my wits end and probably would have tried anything. But the
best part is that it worked and now Crystal never ever coughs or has a runny nose. Just simply never. If she
starts a cough I know it is some kind of viral infection and I begin her nebulizer with albuterol and CPT
treatments immediately. I DO NOT give her an antibiotic until her fevers stay higher than 101 for a whole day,
simply because I agree with the doctor in that her body needs to be given the chance to develop memory cells
which are our bodies natural immunity.
Concern from another SMA family:
"I worry about suppressing any cough ever though and wouldn't do that."
Response: I think it is important to say that I encourage the coughing as well. Crystal and I play and practice coughing, I got her thinking it is fun to cough. But that is not what acidophilus does, it does not help with viruses or the real cough when our children catch something that can cause fevers. What acidophilus helps with is mucus from secretions that have built up in their systems, harmless mucus, but like I said with Crystal they would built up on her voice box and then while they didn't really get her sick with fevers, they would interfere with her swallowing issues and she would just have this annoying dry cough all the time that she just could not shake. But this cough was not a representation of being sick, it was just built up mucus because she couldn't cough to spit it out or swallow it. If she could, then the mucus would not build up. But the acidophilus helps eat away the mucus so it will be disposed of instead of just sitting there. It is a natural digestive enzyme that we have in our body anyway.
Elaine-Prednisone dries up the excess secretions and seems to open my lungs too. Sometimes along with the gunk, my lungs just feel "tight" and the prednisone allows me to get a deeper breath. At least that is how it feels to me. If it is one of those days out of the blue, it takes about 1/2 hour for the secretions to dry up after taking 1/2 a 10 mg tablet. But it does not make me feel too dry. I don't have any side effects while taking it but no matter how slowly I come off of it, I will usually have headaches for a week or more afterwards.. it's still worth it to me. Whenever I tell my Dr. how well it works for me.. he just smiles and says, "it's our secret weapon".. Of course it was his idea, about 10 years ago the first time he prescribed it, I was skeptical but I do trust him and he was right, it just works great for me. I know that a lot of people have side effects that could be severe. For me, it works ! I'm 54 and sma 3, trach for 30 years, vent at night.
Sallie-One thing that I would really recommend that you do right now is to stop trying to sit him up. Even when we are able to get the tube, In/Ex, BiPAP, etc. early for our children, they go through a VERY positional time. (Type 1s stay somewhat positional but get better with age). Anyway, Kalair's swallow deteriorated rapidly at 5 months. We ended up having to take her to New Jersey for gtube placement because our local hospital was not familiar with either Dr. John Bach's respiratory protocol or the method using local anesthesia with IV sedation to place a gtube developed by Dr. Colin Bethyl.
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