Respiratory Care!

About the rattling at the baseline, yes that is another problem that I was getting nowhere with the doctors on. Crystal's neurologist did tell me that SMA children for whatever reason secrete more than normal even sweat. As far as excessive saliva it just seems to gather on the voice box as mucus and since their lungs are so weak they are not strong enough to cough it up and out or at least down the esophagus so they can swallow it. He also said that it shouldn't pose a threat because as long as she maintains an upright position then when the voice box got over loaded it would then tip into the esophagus and not the trachea. Well that's great except that she still coughed all day and half through the night and her appetite stayed way down and she has difficulty swallowing. I found from another family of sma that they found using a nebulizer with albuterol, mucamist and saline to be very helpful. Well no doctor here would prescribe it for her so I cheated. I have a friend that has a son with Cystic Fibrosis and they let me use all of that stuff. They had an extra machine and went to refill their son's script for me. And it WORKED!!! Within 4 days of giving her treatments 3 times a day the rattling and coughing stopped and she has been fine ever since. Well its been about 3 weeks. Now that I have told my doctor how effective this treatment was, he has written a script for it and we have our own machine and meds now. But this amino diet is supposed to help with the secretions as well once it is going consistently and in full motion because there are a lot of other things involved besides just the amino's. I also got a tip from one of the other families that the supplement acidophilus helps with the secretions as well. I bought some, and it worked so well that Crystal seldom has a recurrence of her secretions; well, as long as I don't over expose her to the cold weather. But even when her secretions do cause her to begin a cough, the acidophilus kicks in and has it cleared up before the day is over. I have done a lot of experimenting with her exposure to the different weather temps and these are the guidelines that I follow with her:

Weather tolerance: 1.) 40 degrees and below-stay inside and cover nose and mouth with scarf for travel and emergencies 2.) 40 to 55 degrees-stay inside, but do not need to cover mouth and nose with scarf for travel and emergencies 3.) 55 to 80 degrees-May go outside with no limitations 4.) 80 to 90 degrees-May go outside for a period no longer than 15 minutes an hour 5.) 90 degrees and above-keep inside *Reasons: Breathing in the cold air causes Crystal to produce excessive secretions that turn to mucous and stay on her voice box since she is unable to cough hard enough to kick the mucous up and over into the esophagus or spit it out. Being exposed to hot weather exhausts her and fatigues her. She basically will become even more weak and unable to accomplish even the simple tasks for her.

Crystal's Care Package
Postural Drainage Positions: For Chest Percussion Treatments.
Dr. John Bach's page of information and links: 
      Dr. Bach's Website
     The University Hospital's Website
     The University Hospital's ventilation site
     Center for Ventilator Management Alternatives
     UMDNJ-New Jersey Medical
     Guide to the Evaluation and Management of Neuromuscular Disease
     Protocol for Management of SMA Children at the University Hospital Center for Ventilator Management Alternatives 
     Preventive Techniques in Dealing with Respiratory Tract Infections
     In-Exsufflators 101: A Practical Guide to the Use of an In-Exsufflator
     SMA Type 1: Noninvasive Respiratory Management Approach
     Pulmonary Morbidity Prevention: Patients with Neuromuscular Disease 
     Infants & Small Children: SMA Types 1, 2 & Congenital Myopathies
     Air Stacking
     Breathing Latin
     Full bibliography articles by Dr. Bach

Crystal is so good at creating her own ways of playing that are good for her. Any kind of blowing is good to help strengthen the lungs and this is one her favorite things to do.

Party blowers are cheap and Crystal loves them.

She even blows bubbles in her horse's troft.



Hit Counter