There are various gene defects for CMS. I have been privileged to have the Internet and speak with many CMS folks that have various gene defects different from Luke's.
It's key to note that one gene defect may not respond well to a medication that another gene defect will respond greatly too. In fact, sometimes it can be quite dangerous if you start treatment without really knowing exactly what gene defect your dealing with. My advice...GO TO THE MAYO CLINIC and get tested before approving any treatment. Or..have your blood sample sent to the Mayo under your primary local neurologist. All information here is just a glimpse of what some medications our CMS friends are responding well too.
Rapsyn Gene defect - Medication "Mestinon" and sometimes "3,4 DAP"
Dok-7 defects - Albuterol and/or Ephedrine
Again, there are a few other gene defects and some are not responsive to medication. It's so hard to know until you really seek professional help from the Mayo Clinic and/or your local Neurologist.
Tuesday, October 9, 2007
What is a Gtube button?
What is a GTUBE/ CLICK HERE: GTUBE EXPLANATION
Special note by mom: As a parent, we were really 'freaked out' when the NICU doctors took us in a room and explained that Luke would need a gtube. What? we asked? What in the world is this about?!
At any rate, after an in depth explanation of what this was and why..we realized that in order to give the proper nutrition to our son...we had no choice. He simply could not suck/swallow without aspirating. He wanted to eat...KEEP THIS MIND...but it went down the wrong way. Aspirating means= going down to the lungs versus the esophagus.
Please, please hear me parents. It's NOT THAT BIG OF A DEAL. Trust me when I tell you...it's not! This surgery is performed worldwide with literally zero side affects. It's amazing! And..it saved our sons' life.
If you at all feel embarrassed by this, or have to surrender that your child is 'special'. Then, your not alone. We all go through it. However, when the rubber meets the road, you are the child's only voice. KEEP YOUR CHILD HEALTHY. Everyone will embrace it. And..the ones that don't...'know not what they are even looking at'. They are looking at the most amazing miracle created by man. (well, in my opinion..by God..) But, simply put..take advantage of the medical miracles that God whewed man to create to preserve life.
Much love....Andrea (mom to Luke)
Special note by mom: As a parent, we were really 'freaked out' when the NICU doctors took us in a room and explained that Luke would need a gtube. What? we asked? What in the world is this about?!
At any rate, after an in depth explanation of what this was and why..we realized that in order to give the proper nutrition to our son...we had no choice. He simply could not suck/swallow without aspirating. He wanted to eat...KEEP THIS MIND...but it went down the wrong way. Aspirating means= going down to the lungs versus the esophagus.
Please, please hear me parents. It's NOT THAT BIG OF A DEAL. Trust me when I tell you...it's not! This surgery is performed worldwide with literally zero side affects. It's amazing! And..it saved our sons' life.
If you at all feel embarrassed by this, or have to surrender that your child is 'special'. Then, your not alone. We all go through it. However, when the rubber meets the road, you are the child's only voice. KEEP YOUR CHILD HEALTHY. Everyone will embrace it. And..the ones that don't...'know not what they are even looking at'. They are looking at the most amazing miracle created by man. (well, in my opinion..by God..) But, simply put..take advantage of the medical miracles that God whewed man to create to preserve life.
Much love....Andrea (mom to Luke)
PICTURE OF THE GTUBE
PICTURE OF THE EXTENSTION THAT FEEDS THE BABY THRU THE GTUBE
Monday, October 1, 2007
Live Video of changing a gtube/button out..
Warning: If your squeemish in any way....I would not recommend watching this. However, if you want to get a glimpse of our life...then watch on loved ones!
A Gtube button change out for Luke was required. (his other broke on us) What this means is Luke's button broke and Wanda/I had to pull his current "broke" button out of his stomach and replace it with a new one.
I think you'll be fascinated by how easy this is. Now, please note: We have to carry a spare button everywhere we go. You've typically got 1 hour to replace the button if the button ever got pulled out and could not be put back in. Otherwise, the stoma (the surgical button hole) will close up and your back in surgery. (no pressure) :)
I used to have thoughts of us running to the ER. However, I did this myself the first time at 6mths and it was so darn easy. I felt very 'nursy'. Now...why waste a trip to the ER when you can do it yourself. We've come a long way baby. Here's a glimpse...sit back and enjoy. small tip: (I would not eat while watching)
A Gtube button change out for Luke was required. (his other broke on us) What this means is Luke's button broke and Wanda/I had to pull his current "broke" button out of his stomach and replace it with a new one.
I think you'll be fascinated by how easy this is. Now, please note: We have to carry a spare button everywhere we go. You've typically got 1 hour to replace the button if the button ever got pulled out and could not be put back in. Otherwise, the stoma (the surgical button hole) will close up and your back in surgery. (no pressure) :)
I used to have thoughts of us running to the ER. However, I did this myself the first time at 6mths and it was so darn easy. I felt very 'nursy'. Now...why waste a trip to the ER when you can do it yourself. We've come a long way baby. Here's a glimpse...sit back and enjoy. small tip: (I would not eat while watching)
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