cfrd question

[kandi]

I was just wondering for those of you that have already been diagnosed with cfrd what did your blood sugar numbets look like? My son has been having problems with his blood sugar going up. Last Oct. when he was in the hospital they noticed his sugar was up and we took away juice and sugary drinks and that seemed to help and after a few months stopped the checking of his sugar. Then this month (June) he went for his yearly blood work and glucose test and his results came back abnormal. I am concerned for him and what all this means. He was diagnosed Nov. 02 but I stilll feel we are learning about all cf has to bring. He was sick before this but it wasn't till then we found out. He was 9 at the time. We had to face putting a feeding tube in in Jan 06 because he was listed as failure to thrive and now we got him eating good and we have to face this.
Could someone out there please explain what they have to do daily dealing with cfrd and what their blood sugar numbers were to be diagnosed with this? So far his numbers have been bouncing around 108 to 131 and a few around the 180's.

<img src="i/expressions/face-icon-small-confused.gif" border="0"> Thanks

 

[Jane]

Kandi, It sounds so similar to what happened with my son. Can't these kids catch a break? My sons both have g-tubes. One has gained a lot, the other has been having problems. When they were worried about the sugars, his numbers were between 100 and 180, some 220. It turned out to be from a medicine.

When we were facing this I got lots of good advice from others here. Do a search for CFRD from the forum and see what comes up.

Good luck

 

[anonymous]

I have some questions btw. Anyone have any clue (with any type of factual data) what helps designate what makes some develope CFRD and some don't? I'm sure mutations and diet play heavily into it, but i'm sure there are some intangibles. I know some older CF's who don't have it, and real young ones who do.

 

[julie]

Kandi,

My husband Mark has had fluctuationg BSL's like this too. Anywhere from the 60's to the 200s, and for no rhyme or reason. We did a 'diet monitor' for a few weeks to see if the levels coorelated to certain foods, certain times of day... and nothing really made sense to us.

So they just told us that at this time we need to monitor his diet and adjust his intake depending on whether his levels are high or low. CFRD can be such a hard thing.

To the last poster, I too am really curious about what causes the development. I've heard a number of different arugments that diet is a factor in CFRD (factor meaning can cause it/speed it up), then I've heard a number of arugments that it is not a factor. So, Mark and I are still pretty unclear on this.

I too am curious about the specifics so maybe someone can enlighten us...

 

[anonymous]

My son who is 21 has also been dealing with this- we had to change from a private dr to a clinic setting and a couple of times we didnt know they were going to do blood work and his numbers would be high but when they did the fasting tests and the glucose tolerance test the numbers were fine. We went to see an endocronoligist and he said if the fastings were fine he didnt know why they had sent us. A couple of weeks ago he had to be hospitalized for an infection and once again they brought it up and did the glucose tolerance again. They came in and said he didnt meet any of the criteria for CFRD but they went ahead and put him on actos. I am totally confused- his nos were erratic but many have told me that could be from the infection or meds. His dr who we had never seen before said they were just being more aggressive than they used to be. This is fine if it keeps it under control but I hate for him to take more medicine if its not necessary. They sent us home with no monitoring device or not seeing the endo drs at the hospital. He goes back next week- sometimes I almost think they are trying to find it. Susan

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>

Kandi,



My husband Mark has had fluctuationg BSL's like this too. Anywhere from the 60's to the 200s, and for no rhyme or reason. We did a 'diet monitor' for a few weeks to see if the levels coorelated to certain foods, certain times of day... and nothing really made sense to us.



So they just told us that at this time we need to monitor his diet and adjust his intake depending on whether his levels are high or low. CFRD can be such a hard thing.



To the last poster, I too am really curious about what causes the development. I've heard a number of different arugments that diet is a factor in CFRD (factor meaning can cause it/speed it up), then I've heard a number of arugments that it is not a factor. So, Mark and I are still pretty unclear on this.



I too am curious about the specifics so maybe someone can enlighten us...</end quote></div>

As far as i know, cf eventually causes damage to the islets of the pancrease, causing them to produce less insulin over time. It's pretty common, but why it affects some more than others, could be a bunch of reasons? More inflammation in some then others, more mucus being produced in the pancrease. I think it's kinda like the lungs though, ya know. They can be fine for a while, but over time they do get a bit worse, and that varies greatly from person to person.

 

[kandi]

Thanks everyone for the insight. My son has a hard time dealing with his cf. Since his dx his grades have went down and his behavior erratic at times. I am not sure if it is just from having a hard time dealing with the cf and feeling different or the fact it is hormonal due to the fact he just turned 13. Then he took it hard about having a feeding tube (by the way he has gained 10 lbs since Jan) put in, but finding out that he may also have cfrd has been devastating to him. He asked me what else is there going to be. I appreciate everything everyone has to say. We live in a small town and there is noone around here that has has to deal with cf and its good I have these forums to turn to. THANKS A LOT
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