RE - secretions

[Guest guest]

Kilbride,

I have mentioned on this list before that years ago when we first put on D.M.G. - DIMYTHELGLYCINE, one of the first things we notice was a significant improvment in the "rattles" in the back of his throat caused by excessive secretions. We used to have to suck him out with a suction machine all the time when he was very young, & the rattles were so bad at times, it was difficult to go out in public because it would make others around you feel very unconfortable.

Regards,

& Savage ( - 8 yrs- complex IV mito - Australia)

Message: 22 Date: Wed, 18 Aug 2004 19:53:48 -0700 (PDT) Subject: Controlling secretions- Please help if you can...Hello to all you mito experts; I'd appreciate hearing from anyone who might havea few tricks up her/his sleeve on how to controlexcessive secretions. This has been a cronic problemfor Kirkland since May and is resulting in constantaspiration pneumonias and hospital admissions. Kirk's now on 24 hr home O2, we bought anoximeter, have a nebulizer, suction etc. and we'restill having big troubles getting him to clear hischest. Our neurologist prescribed Glycopyrullate viag-j tube to dry up the secretions and not only did weend up in hospital with pneumonia, but with severeurine retention requiring in & out catheterizations for2 days as well as a UTI from "pseudomonas". We took him off the Glycopyrullate (of course)but he's still having a lot of problems handlingsecretions. Our neurologist has always been open tothe parent input from this group and often asks mewhat the other families in the group have to say. Atour last appointment he asked me to survey you to see:A) HAVE ANY OTHER KIDS BEEN ON GLYCOPYRULLATE TOCONTROL SECRETIONS? IF SO, HAVE ANY SUFFERED FROM URINARY RETENTION DUETO THE GLYCOPYRULLATE?C) WHAT ELSE ARE PEOPLE USING OR DOING FOR SECRETIONREDUCTION? Please share any info you might have. Kirk'sbasically been sent home from hospital with cronicpneumonia and we're trying to deal with his healthissues at home in a palliative setting. I just can'tspend much more time in hospital. My other two boysare starting to have a hard time with our frequentlong stays and I don't know what else to do to helpall of us. I get so much useful info from you all that Ithought I'd put the question out to the group. Onlythen will I feel that we've explored every avenue.I hope to hear from any who can help.Thanks a bunch, Kilbride, mom to Kirkland, 3.5 yrs, Complex Onedef., intractable seizures, severe dev'l delays, g-jtube, 24 hr O2, oximetry, suction, nebulizer, CVI