--- In Myotubular_Myopathy@yahoogroups.com
, "dhahjh" <dhahjh@y...>
> Hi..my son Jacob has xlmtm and is 15 months old. He has a lot of
> trach secretions and we have succeeded at "drying" some of it up
> with Robinul, but each day is different as far as his response to
> the dosage. I was wondering if any other parent has tried this
> medication for secretions and what the outcome was. Also, we live
> in Florida where it is extremely humid. This seems to make it
> harder for Jacob to breathe and it increases his secretions.
Hi, not sure yet if my son has myotubular myopathy, but he is Trached.
He is 2 yrs. and he also had alot! of secretions, we were suctioning
him at least 3 -4 times a minute. The robinul did absolutly nothing
except race his heart, plus we were afraid of his secretions going
the opposite was and him plugging. What worked well for Patrick was
the Passe Muir speaking valve. What a difference in secretions -
maybe we suction once an hour(maybe).
Like I said , Patrick has not yet been diagnosed with this disorder,
but is being scheduled for the muscle biopsy, he is trached though.
I'm new to this web-site and interested in other peoples stories and
experiences. I hope you have been able to get your son's secretion's
under control! Let me know