Brenda Brames-Briefly 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.

Brenda Brames-
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.

So the tube wonderfully solved the feeding dilemma but she was still in the process of losing her swallow and secretions poured out of her mouth. We quickly learned that she could no longer lay with her head at midline (flat on back facing up) because all of that saliva would be pulled down her throat and across her airway. We also quickly learned that she did the VERY BEST if she were laying flat on her back with her head turned to the right! That way she could spit out most of the saliva. There were several months where this was the only semi-reliable position to have her in.  She still cannot be left at midline but as long as her head is turned to one side or the other she does pretty well (we do suction her as needed). I also remembered hearing at the first FSMA conference that I went to (2000 when Kalair was just 3 months old) that "Type 1 kids do best with their heads down". So that helped us to understand what was going on. Really the only time that we sit Kalair up for any length of time is when she is in her rear facing car seat (is fast out growing) but she can only tolerate that because we put her on BiPAP while in the seat. You need to take this into consideration when you are looking into a stroller/chair for him. You need one that he can lay completely flat in and turn his head to the side. We are still in the process of fighting for one ourselves. Some one donated a "Kid Kart" to us years ago and it would not lay down so we could only really use it if we put her on BiPAP while in i! t. The other thing I would say, make sure that he is on a SAT monitor at all times. (with programmable alarm and a soft tape lead) With them so positional and crashing so often, you will have the best chance of not having them crash hard enough to need the paramedics if you have that safety alert. I would get that tube ASAP because with it you will be able to hydrate him and get him on the diet so that his secretions will not be "thick". And yes, heartbreakingly, during this very positional time, it does become VERY hard to hold them in your arms safely. You have to think about keeping their head down and turned to the side so that they can spit out their secretions but the swallow challenge is still so new to them that the least little jostle seems to choke them. So lay them on a bed big enough for both of you in their safe position and wrap yourself around them for the closeness. It helps a little. And you both won't feel quite as much of a loss. It is a shame that virtually no doctors have enough experience with Type one children to be able to give parents simple tips like "lay them down and turn their head to the side". Simple tips that would make for so much less suffering in our children. They don't seem to be inclined to learn better methods of keeping SMA children comfortable because they have been taught that the child will not be around long enough for it to matter. And yet many of them are quick to denigrate any information that a parent may gather from a group of parents who have lived, day in and day out with SMA children because "no study has been done". It is not like the doctors have anything else to offer parents who are no where near ready to "let nature take it's course". The Bach protocol, the amino acid based diet and attention to all of the little universal details that profoundly affect weak SMA children. These methods of managing SMA must become universally available for those who would like to give them a try.

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