I'm not smiling right now...

TonyaH · Apr 30, 2008

point: His vitamin K levels are fine, and he has been on the supplement for about a month now.

Lynda: We have stopped everything for 24 hours. Tonight we are to resume pulmozyme, but keep him off of his HTS.

Barb: Interesting that you would say that, because for the past couple of months he has been telling me from time to time that he feels really weak, especially when he's hungry. Maybe I am very ignorant on this, but doesn't a regular blood draw show low sugar levels? He has had so many this year I would think that they would have noticed something by now. Am I wrong here?

This feedback is exactly what I was hoping for. I'll ask about his sugar levels and I'm considering not starting the pulmozyme back up tonight.

Thanks,

TonyaH · Apr 30, 2008

point: His vitamin K levels are fine, and he has been on the supplement for about a month now.

Lynda: We have stopped everything for 24 hours. Tonight we are to resume pulmozyme, but keep him off of his HTS.

Barb: Interesting that you would say that, because for the past couple of months he has been telling me from time to time that he feels really weak, especially when he's hungry. Maybe I am very ignorant on this, but doesn't a regular blood draw show low sugar levels? He has had so many this year I would think that they would have noticed something by now. Am I wrong here?

This feedback is exactly what I was hoping for. I'll ask about his sugar levels and I'm considering not starting the pulmozyme back up tonight.

Thanks,

TonyaH · Apr 30, 2008

point: His vitamin K levels are fine, and he has been on the supplement for about a month now.

Lynda: We have stopped everything for 24 hours. Tonight we are to resume pulmozyme, but keep him off of his HTS.

Barb: Interesting that you would say that, because for the past couple of months he has been telling me from time to time that he feels really weak, especially when he's hungry. Maybe I am very ignorant on this, but doesn't a regular blood draw show low sugar levels? He has had so many this year I would think that they would have noticed something by now. Am I wrong here?

This feedback is exactly what I was hoping for. I'll ask about his sugar levels and I'm considering not starting the pulmozyme back up tonight.

Thanks,

TonyaH · Apr 30, 2008

point: His vitamin K levels are fine, and he has been on the supplement for about a month now.

Lynda: We have stopped everything for 24 hours. Tonight we are to resume pulmozyme, but keep him off of his HTS.

Barb: Interesting that you would say that, because for the past couple of months he has been telling me from time to time that he feels really weak, especially when he's hungry. Maybe I am very ignorant on this, but doesn't a regular blood draw show low sugar levels? He has had so many this year I would think that they would have noticed something by now. Am I wrong here?

This feedback is exactly what I was hoping for. I'll ask about his sugar levels and I'm considering not starting the pulmozyme back up tonight.

Thanks,

TonyaH · Apr 30, 2008

point: His vitamin K levels are fine, and he has been on the supplement for about a month now.
 
 Lynda: We have stopped everything for 24 hours. Tonight we are to resume pulmozyme, but keep him off of his HTS.
 
 Barb: Interesting that you would say that, because for the past couple of months he has been telling me from time to time that he feels really weak, especially when he's hungry. Maybe I am very ignorant on this, but doesn't a regular blood draw show low sugar levels? He has had so many this year I would think that they would have noticed something by now. Am I wrong here?
 
 This feedback is exactly what I was hoping for. I'll ask about his sugar levels and I'm considering not starting the pulmozyme back up tonight.
 
 Thanks,

AnD · May 1, 2008

He will need an Oral Glucose Tolerance Test (OGTT) to have an accurate check for CFRD. From what I have read, as simply put as possible (for me, lol), a slow release of insulin is most often the case with us, especially in the beginning of CFRD, and you have both highs (from not enough insulin getting out fast enough) and lows (from it getting out too late, and some of the sugars have been already "burnt off"). So, the single draw blood test (A1c?) is not always accurate, if the highs and lows average out to a "normal" number (I hope that made sense... <img src="i/expressions/face-icon-small-blush.gif" border="0"> ).

It also may be an inflammation issue (since it's both his liver and his lungs). I would ask about that, too, and see what testing/checking for (allergies?) and treating that would be. Is he on Ursidoil?

Good luck!

AnD · May 1, 2008

He will need an Oral Glucose Tolerance Test (OGTT) to have an accurate check for CFRD. From what I have read, as simply put as possible (for me, lol), a slow release of insulin is most often the case with us, especially in the beginning of CFRD, and you have both highs (from not enough insulin getting out fast enough) and lows (from it getting out too late, and some of the sugars have been already "burnt off"). So, the single draw blood test (A1c?) is not always accurate, if the highs and lows average out to a "normal" number (I hope that made sense... <img src="i/expressions/face-icon-small-blush.gif" border="0"> ).

It also may be an inflammation issue (since it's both his liver and his lungs). I would ask about that, too, and see what testing/checking for (allergies?) and treating that would be. Is he on Ursidoil?

Good luck!

AnD · May 1, 2008

He will need an Oral Glucose Tolerance Test (OGTT) to have an accurate check for CFRD. From what I have read, as simply put as possible (for me, lol), a slow release of insulin is most often the case with us, especially in the beginning of CFRD, and you have both highs (from not enough insulin getting out fast enough) and lows (from it getting out too late, and some of the sugars have been already "burnt off"). So, the single draw blood test (A1c?) is not always accurate, if the highs and lows average out to a "normal" number (I hope that made sense... <img src="i/expressions/face-icon-small-blush.gif" border="0"> ).

It also may be an inflammation issue (since it's both his liver and his lungs). I would ask about that, too, and see what testing/checking for (allergies?) and treating that would be. Is he on Ursidoil?

Good luck!

AnD · May 1, 2008

He will need an Oral Glucose Tolerance Test (OGTT) to have an accurate check for CFRD. From what I have read, as simply put as possible (for me, lol), a slow release of insulin is most often the case with us, especially in the beginning of CFRD, and you have both highs (from not enough insulin getting out fast enough) and lows (from it getting out too late, and some of the sugars have been already "burnt off"). So, the single draw blood test (A1c?) is not always accurate, if the highs and lows average out to a "normal" number (I hope that made sense... <img src="i/expressions/face-icon-small-blush.gif" border="0"> ).

It also may be an inflammation issue (since it's both his liver and his lungs). I would ask about that, too, and see what testing/checking for (allergies?) and treating that would be. Is he on Ursidoil?

Good luck!

AnD · May 1, 2008

He will need an Oral Glucose Tolerance Test (OGTT) to have an accurate check for CFRD. From what I have read, as simply put as possible (for me, lol), a slow release of insulin is most often the case with us, especially in the beginning of CFRD, and you have both highs (from not enough insulin getting out fast enough) and lows (from it getting out too late, and some of the sugars have been already "burnt off"). So, the single draw blood test (A1c?) is not always accurate, if the highs and lows average out to a "normal" number (I hope that made sense... <img src="i/expressions/face-icon-small-blush.gif" border="0"> ).
 
 It also may be an inflammation issue (since it's both his liver and his lungs). I would ask about that, too, and see what testing/checking for (allergies?) and treating that would be. Is he on Ursidoil?
 
 Good luck!

barbc888 · May 1, 2008

I suffered from the symptoms of CFRD for about 3-4 months before they figured out what the problem was. I was very weak and tired and lost 12 lbs. I think my blood sugar was in the 600 range when I was diagnosed, which is extremely way too high. If they're not testing his blood for diabetes, then it might slip them by. You have that mother's instinct that something's not right, and it's good that you're exploring all the possibilities. Please keep us posted!

barbc888 · May 1, 2008

I suffered from the symptoms of CFRD for about 3-4 months before they figured out what the problem was. I was very weak and tired and lost 12 lbs. I think my blood sugar was in the 600 range when I was diagnosed, which is extremely way too high. If they're not testing his blood for diabetes, then it might slip them by. You have that mother's instinct that something's not right, and it's good that you're exploring all the possibilities. Please keep us posted!

barbc888 · May 1, 2008

I suffered from the symptoms of CFRD for about 3-4 months before they figured out what the problem was. I was very weak and tired and lost 12 lbs. I think my blood sugar was in the 600 range when I was diagnosed, which is extremely way too high. If they're not testing his blood for diabetes, then it might slip them by. You have that mother's instinct that something's not right, and it's good that you're exploring all the possibilities. Please keep us posted!

barbc888 · May 1, 2008

I suffered from the symptoms of CFRD for about 3-4 months before they figured out what the problem was. I was very weak and tired and lost 12 lbs. I think my blood sugar was in the 600 range when I was diagnosed, which is extremely way too high. If they're not testing his blood for diabetes, then it might slip them by. You have that mother's instinct that something's not right, and it's good that you're exploring all the possibilities. Please keep us posted!

barbc888 · May 1, 2008

I suffered from the symptoms of CFRD for about 3-4 months before they figured out what the problem was. I was very weak and tired and lost 12 lbs. I think my blood sugar was in the 600 range when I was diagnosed, which is extremely way too high. If they're not testing his blood for diabetes, then it might slip them by. You have that mother's instinct that something's not right, and it's good that you're exploring all the possibilities. Please keep us posted!

TonyaH · May 1, 2008