Round 1 Successful (we think)
Posted Feb 6, 2011 8:26am
So, we saw Dr. Abdallah last week and received Kaden's holter monitor results. His heart rate is definitely doing what we thought it was doing, although, no one really knows when it will regulate. We briefly talked about a pacer and decided that we wouldn't discuss it again until we've given treatment a fair try.
We were super excited that Kaden tolerated 2 days of decreased Miralax (pooping medicine) and was still able to poop, but than he didn't poop at all for about 3 days after the decrease.....and yes, we talk about poop on this page....all the time. He is still having night time episodes that nobody on this planet should have to endure, but he looks better during the day.
We tried to increase his dosages last week, but couldn't increase the Mestinon because his blood pressure was too low. He REALLY needs the Mestinon to be increased. The medicine can't prove it's full potential at this point and seems like it could work wonders, if he could tolerate enough of it. It's supposed to wake up his parasympathetic system. He will always have Dysautonomia, but there are certain components we can control with this medicine. The Mestinon is supposed to make his tummy work for digestion and poop. It's supposed to help him pee regularly, and regulate all of his other systems and basically say "Hey! Wake up! Do your job-----unknown body part!"
We see the doctor again tomorrow, and will see what happens then. It looks like we'll be in VA for at least 3 more weeks.
Love to all, and thank you for your support.
We were super excited that Kaden tolerated 2 days of decreased Miralax (pooping medicine) and was still able to poop, but than he didn't poop at all for about 3 days after the decrease.....and yes, we talk about poop on this page....all the time. He is still having night time episodes that nobody on this planet should have to endure, but he looks better during the day.
We tried to increase his dosages last week, but couldn't increase the Mestinon because his blood pressure was too low. He REALLY needs the Mestinon to be increased. The medicine can't prove it's full potential at this point and seems like it could work wonders, if he could tolerate enough of it. It's supposed to wake up his parasympathetic system. He will always have Dysautonomia, but there are certain components we can control with this medicine. The Mestinon is supposed to make his tummy work for digestion and poop. It's supposed to help him pee regularly, and regulate all of his other systems and basically say "Hey! Wake up! Do your job-----unknown body part!"
We see the doctor again tomorrow, and will see what happens then. It looks like we'll be in VA for at least 3 more weeks.
Love to all, and thank you for your support.
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