for parents

[mom2owen]

So, Owen is now getting CPT and it is working well, as far as we can tell. He coughs after every side. And, even when he coughs during the day, lots of stuff continues to come up. How did you teach your kids to spit it out? It seems like this should be easy but, it hasn't been. Sometimes, if he doesn't get his mouth in his elbow fast enough to cover his cough, we have something to clean up off the floor. But, he is also very used to clearing his throat, or coughing it up and then naturally wants to swallow it and move on. Do you use a cup? Kleenex? Luckily (well, not really luckily...), it is sort of green so we can spot it on the floor!

And my next question is about shaky hands. He has had this for about a year. He has had blood sugars checked, they have gone as high as 220 but only as low as 70. He shakes all the time and has more symptoms when he has higher blood sugars (cranky, to put it mildly, more shaky and sweaty). But his A1C is normal and so he does not have any type of diabetes. Any one else have a kiddo with shaky hands? Just curious if it might just be because he is always a little bit drained from getting through the day. Usually, by Friday afternoon, he is exhausted from the week. Could it be that all of the extra energy it takes to breath and digest might cause this? I once thought it might be from the albuterol but he hasn't always been on it. Could Symbicort cause it? Our doctors seem to accept it since it is not blood sugar related and they have not offered any other ideas for the cause.
Ok, thanks!

 

[mom2owen]

So, Owen is now getting CPT and it is working well, as far as we can tell. He coughs after every side. And, even when he coughs during the day, lots of stuff continues to come up. How did you teach your kids to spit it out? It seems like this should be easy but, it hasn't been. Sometimes, if he doesn't get his mouth in his elbow fast enough to cover his cough, we have something to clean up off the floor. But, he is also very used to clearing his throat, or coughing it up and then naturally wants to swallow it and move on. Do you use a cup? Kleenex? Luckily (well, not really luckily...), it is sort of green so we can spot it on the floor!

And my next question is about shaky hands. He has had this for about a year. He has had blood sugars checked, they have gone as high as 220 but only as low as 70. He shakes all the time and has more symptoms when he has higher blood sugars (cranky, to put it mildly, more shaky and sweaty). But his A1C is normal and so he does not have any type of diabetes. Any one else have a kiddo with shaky hands? Just curious if it might just be because he is always a little bit drained from getting through the day. Usually, by Friday afternoon, he is exhausted from the week. Could it be that all of the extra energy it takes to breath and digest might cause this? I once thought it might be from the albuterol but he hasn't always been on it. Could Symbicort cause it? Our doctors seem to accept it since it is not blood sugar related and they have not offered any other ideas for the cause.
Ok, thanks!

 

[mom2owen]

So, Owen is now getting CPT and it is working well, as far as we can tell. He coughs after every side. And, even when he coughs during the day, lots of stuff continues to come up. How did you teach your kids to spit it out? It seems like this should be easy but, it hasn't been. Sometimes, if he doesn't get his mouth in his elbow fast enough to cover his cough, we have something to clean up off the floor. But, he is also very used to clearing his throat, or coughing it up and then naturally wants to swallow it and move on. Do you use a cup? Kleenex? Luckily (well, not really luckily...), it is sort of green so we can spot it on the floor!
<br />
<br />And my next question is about shaky hands. He has had this for about a year. He has had blood sugars checked, they have gone as high as 220 but only as low as 70. He shakes all the time and has more symptoms when he has higher blood sugars (cranky, to put it mildly, more shaky and sweaty). But his A1C is normal and so he does not have any type of diabetes. Any one else have a kiddo with shaky hands? Just curious if it might just be because he is always a little bit drained from getting through the day. Usually, by Friday afternoon, he is exhausted from the week. Could it be that all of the extra energy it takes to breath and digest might cause this? I once thought it might be from the albuterol but he hasn't always been on it. Could Symbicort cause it? Our doctors seem to accept it since it is not blood sugar related and they have not offered any other ideas for the cause.
<br />Ok, thanks!

 

[JustDucky]

I think the shakiness could be from the meds, Duonebs absolutely does that to me, especially if I have to take them more frequently than usual. The long acting bronchodilator in Symbicort I would think could do that as well. If your kid is on prednisone, that one is also suspect as far as shakiness if he is on oral steroids as well.
As far as spitting, I have a huge box of Kleenex handy...I probably have on in every room of my apt just in case I cough something up so I have something to spit into.
Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn

 

[JustDucky]

I think the shakiness could be from the meds, Duonebs absolutely does that to me, especially if I have to take them more frequently than usual. The long acting bronchodilator in Symbicort I would think could do that as well. If your kid is on prednisone, that one is also suspect as far as shakiness if he is on oral steroids as well.
As far as spitting, I have a huge box of Kleenex handy...I probably have on in every room of my apt just in case I cough something up so I have something to spit into.
Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn

 

[JustDucky]

I think the shakiness could be from the meds, Duonebs absolutely does that to me, especially if I have to take them more frequently than usual. The long acting bronchodilator in Symbicort I would think could do that as well. If your kid is on prednisone, that one is also suspect as far as shakiness if he is on oral steroids as well.
<br />As far as spitting, I have a huge box of Kleenex handy...I probably have on in every room of my apt just in case I cough something up so I have something to spit into.
<br />Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Jenn

 

[hmw]

When does his blood sugar go as high as 220? For what it's worth, A1C is not a great predictor of cf-related diabetes and I'd consider asking for a fasting oral glucose tolerance test. His shakiness might not have anything to do with it (as mentioned, bronchodilators can do it, and some kids have issues with intention tremor, etc, which have nothing at all to do with cf), but mentioning blood sugars that high does concern me a bit.

Having a cup and Kleenex handy in all rooms and keeping Kleenex in his pocket sounds like a good idea. Keep in mind though, that if he swallows- at least it's still out of his lungs. It just goes to his stomach that way, not back to his resp. tract. Emily has learned to hold it in her mouth, for the most part, if she coughs up a wad until she can get to a cup or something else to spit into.

I'm glad that the cpt is helping to get him cleared out. That's so important! Since he's producing so much and it's green, I'd try to get someone to run a cf-specific sputum culture on a good sample of it.

 

[hmw]

When does his blood sugar go as high as 220? For what it's worth, A1C is not a great predictor of cf-related diabetes and I'd consider asking for a fasting oral glucose tolerance test. His shakiness might not have anything to do with it (as mentioned, bronchodilators can do it, and some kids have issues with intention tremor, etc, which have nothing at all to do with cf), but mentioning blood sugars that high does concern me a bit.

Having a cup and Kleenex handy in all rooms and keeping Kleenex in his pocket sounds like a good idea. Keep in mind though, that if he swallows- at least it's still out of his lungs. It just goes to his stomach that way, not back to his resp. tract. Emily has learned to hold it in her mouth, for the most part, if she coughs up a wad until she can get to a cup or something else to spit into.

I'm glad that the cpt is helping to get him cleared out. That's so important! Since he's producing so much and it's green, I'd try to get someone to run a cf-specific sputum culture on a good sample of it.

 

[hmw]

When does his blood sugar go as high as 220? For what it's worth, A1C is not a great predictor of cf-related diabetes and I'd consider asking for a fasting oral glucose tolerance test. His shakiness might not have anything to do with it (as mentioned, bronchodilators can do it, and some kids have issues with intention tremor, etc, which have nothing at all to do with cf), but mentioning blood sugars that high does concern me a bit.
<br />
<br />Having a cup and Kleenex handy in all rooms and keeping Kleenex in his pocket sounds like a good idea. Keep in mind though, that if he swallows- at least it's still out of his lungs. It just goes to his stomach that way, not back to his resp. tract. Emily has learned to hold it in her mouth, for the most part, if she coughs up a wad until she can get to a cup or something else to spit into.
<br />
<br />I'm glad that the cpt is helping to get him cleared out. That's so important! Since he's producing so much and it's green, I'd try to get someone to run a cf-specific sputum culture on a good sample of it.