CF Diabetes: What's the workup? What will results means? What's the treatment?

[Aboveallislove]

Kinda in a panic. GI recommended we call CF Clinic about a CF diabetes work-up because I had mentioned ds peeing alot of late. He's only 3. I know this is fairly early for that to set in so hoping it's just a fluck, but was hoping to know what to expect:

1) What does the work-up entail? Do they start with a blood test and then move on to other things based on that results or is it multi-pronged? He is not potty trained yet so if urine testing is part of it, what will they do??

2) What will the various results mean, i.e., what are they testing, what is "normal," borderline, definite level?

3) What is the treatment for CFRD???

Any help (and prayers) much appreciated. I know this is a likelihood in the future but starting at 3 has me pretty worried.

Thanks!

 

[Printer]

Easy, easy easy. I have CFRD and it is not a big deal. A fasting blood test is usually sufficent. PM me.

Bill

 

[Aboveallislove]

Yea, but you're 72--they likely don't have to wrap you in a blanket to draw your blood either. And you'll likely drink the glucose without a fuss as oppose to vomit because you are so upset. ;-) I'll PM you though for more info after Pulmozyme. Do you know though if CFRD is more likely if you aren't completely pancretic insufficient? DS has ddf508 and is completely insufficient. My understanding was that pnacrecitis (and other issues with pancreas) (sp???) are more likely with other mutations, b/c the pancreas does work some. But thanks for the easy, easy, easy--that did settle me down (serious here not sacrastic).

 

[bigstar]

Μy doctors do the glucose tolerance test using a certain amount of Lucozade. Of course the hospital wont provide it so i have to buy it myself from the supermarket. It is a cool drink and is enjoyable to drink oppossed to just plain sugar. Definitely makes the whole process a lot easier especially with an infant. Just my two cents.

 

[JENNYC]

Do you or a family member have a tester at home? When they got worried about Abby I was quickly able to calm myself by testing her first thing in the morning. Now I am not a dr and don't pretend to be (LOL) but I have gone to several diabetes classes with my parents. And I know nothing about CFRD at all! But I would think that your sugar would be high either way. If his morning sugar levels are good, they may just be being cautious because of something that they saw like they did Abby. They did a blood draw and ruled it out, but I had kinda already ruled it out based on what I had checked at home, because I am paranoid too!

 

[Solo]

Diabetes is the worst. I don't know about the rest of you, but I'd take CF before diabetes any day of the week. Maybe it's because my CF hasn't been too much of a burden yet, or because I'm fairly young still, and diabetes really gets in the way of doings things that younger people enjoy. I mean, I certainly cannot just pick up an entire bag of licorice or pretzels and begin eating them. Since I eat late at night, I constantly wake up in the middle of the night with slightly high or low blood sugar levels. Taking 3 shots a day is for the birds, and gets old real quick, as does testing your blood sugar.

I really do not know the work-up for a 3 yr old besides the obvious- a blood test. I was 16 when I was diagnosed with CFRD, and that was 16 years ago, so things might be a bit different.

Any number between 80-120 is normal. They might want to get a fasting reading, in that case is should be under 100.

The treatment is almost always insulin injections. I know that could be the end of the world for a 3 yr old, but if it makes him feel better, I'd say its worth it.

Good luck!

 

[CrisDopher]

I'd like to disagree with Solo. Diabetes is not the worst. I, too, take multiple daily injections and test several times a day. My diabetes is under excellent control. And I find it less odious to keep up with than CF. CF is so TIME consuming. And the number of prescriptions far outweighs the number I need for my insulin and testing strips.

Frankly, injections these days are no big fuss, if by pen. The majority of the time, I can't even feel the needle. With some patience, you can help your 3 year old adjust, I'm sure.

 

[Aboveallislove]

Thanks Cris. We'll get there. Feeling much better this evening. Hoping it's not but like the rest of CF, we'll handle it if it is. Thanks all for insights.

 

[JustDucky]

Yeah, other than having to adjust carbs and keeping on top of the testing and insulin (if needed), it isn't that bad but I will say that it was a bit overwhelming at first getting used to the routine.. I guess like any new diagnosis, there is an adjustment phase and it isn't the same for everyone. For some, their diabetes might be out of control or brittle, swinging easily from hypoglycemia (lows) or extreme highs and is probably extremely frustrating to them if that is the case. For others, they are able to control their DM with diet and just need to monitor themselves to make sure that their sugars are still within acceptable ranges. My diabetes currently is very well controlled so it isn't too bothersome at this point..Yes, I do check my sugars frequently as I am on insulin, Lantus (a long acting basal insulin) and a quick acting insulin in between if my sugars are high enough. Amazingly, my levels are great because of the Lantus and I don't go nuts on the carbs. Like I said, it is different for everyone.

As far as testing goes, your son will need bloodwork, I know it is a challenge for pediatrics as needles are frightening to them. As a lab tech (my pre nursing days), what I did for your son't age group was this: I would ask the mother or father to bring in their favorite toy, anything with music or noise that is distracting.. I put emla cream on them, let it sit for 30 minutes to numb the skin while I took care of other patients. When I called them in for the blood draw, I would ask the mom/dad to hold the child so that they were face to face, have the parent distract the child and then I would quickly draw the blood necessary. For the most part, the child did not even know what happened, they didn't feel the stick, they would look down and it was all done. Maybe they could try something like that...it doesn't work all of the time, but it did about 70% of the time for that age group. It just takes a little patience on the technician's part. Of course, if the kid has had multiple sticks, they will be wise to what is about to happen and will probably put up a fight..

Good luck, I hope all goes well with your little guy!
Jenn 40 wCF

 

[Aboveallislove]

Thanks all! Dr. office did and was only 86, yea!!! Thanks again for the calming words. And Jenn thanks for the idea! DS actually didn't even whimper with the prick and DH said "is it done?" Were able to get flu shot in too, so all and all worked out great!! thanks again.

 

[sasami]

Hi, my daughter was 15 when we found out. She went in to sinus surgery and as a routine check they did her sugar levels at 1o am and she was 975.. I definitely think the cf is easier for her to deal with she hates testing and I know she skips out alot on her injections, but she is 17 almost 18 and its been a battle with her. Good luck.

 

[patrish22]

My girls had type I diabetes (CFRD). They were not diagnosis with it until age 14. Simple fasting blood glucose test. My son is 25 and has not developed CFRD. Treatment is the same as treating type I, at least it was for us. Insulin injections, special diet, etc. Believe me, we always felt that dealing with the diabetes was a walk in the park compaired to dealing with CF. Especially with insulin pumps. Your clinic will advise you. After the girls were diagnosed my son started being careful with his sugar consumption. Try to calm down. You have a life time ahead of you. Enjoy every moment you can rather than worring. We had the blessing of a wonderful CF clinic (still have for my son) that guided us carefully, and had a great endocrinologist. Don't think of it as a "likelihood". Think of it as something that could happen, but don't stress it unless it does. You do have my prayers. Better yet, enjoy the support of the wonderful people here.