It is okay to be worried and be afraid. It is scary at any age I think. I was diagnosed at 17 - after struggling for a year with weight loss, and LITERALLY EVERY other symptom of diabetes you can imagine. I still don't know how I went almost a year from the onset of symptoms before I was diagnosed. That is another story though.
For me weightloss/gain has always been an issue - even before I was diagnosed with CFRD. When I first started getting symptoms of diabetes I weighed 125lbs roughly (I am 5'7"). I ended up lossing 20 lbs of that before I was diagnosed. I lost all of that weight because my blood sugars were elevated for so long. If your daughter does get the CFRD diagnosis and you guys are able to manage her sugars and keep them in the normal range (80-120) she will actually probably put on a few pounds.
The way CFRD and weightloss works is this. Your body converts sugar to energy, so your body can process the energy to do the things it needs to do. Well when you are diabetic your body isn't able to convert the sugars to energy (either at all or as well as before). If the sugar is not being converted it builds up in your blood stream (hence high blood sugars). There is only so much sugar your blood can hold, so once your blood reaches its "fill" the excess sugar is released into your urine - that is how they are able to do the ketone stick test. When you do the ketone stick test it will show you if you are in ketoacidosis. That basically means that your body is not properly converting sugar to energy because it can't or because the sugar is not there (ketoacidosis is pretty much the basis of the Atkins diet). When their is no sugar or the sugar isn't being converted there is no stored energy for the body to burn - THUS the body turns to fat and starts to burn your fat reserves to keep the body running. That is why weightloss can be an issue if diabetes is untreated. If you already knew all of that sorry for the repeat of info - if not hopefully you find it useful.
As for whether or not I get more excerbations since being diagnosed with CFRD. I feel yes I do. I contribute alot of the change in my health to my developing CFRD. That is not to say that every person that develops CFRD will have the same experience, but I am being honest. I have not, until the past 2 years, experienced more hospitalizations - just more getting sick with different things.
Here is another paragraph of info on CFRD and breathing lol. My endocrinologist explained this to me not to long ago. With CF and Diabetes your blood sugars greatly impact your breathing. Even though you may not be aware of it. When your blood sugar is high or low your body thinks you are sick - even though you may not be. Your body/brain then sends messages to your immune system that you are sick and your immune system starts to attack an illness/sickness that may not be there. By doing that it will cause inflammation - which we all know is something we already have a problem with. This can cause you to feel short of breath or cough more when your blood sugar is high. For me I kind of took that info with a grain of salt, but started to think of the times I would feel short of breath for no real reason or shortly after eating and when I had an increased cough and so on. I began noticing that when I was short of breath (and I hadn't done anything to induce it) and I would check my blood sugars and usually my blood sugar was high (like 200 +high). Usually it happens most frequently within an hour or so after I eat. I also experience more of a cough. The endocrinologist recommended that I try to shoot to keep my Hemoglobin A1C level between 5.5-5.7 - instead of the recommended for NON CF Diabetes patients which is 6.2 (that is the average for people without diabetes).
Just so you know Hemoglobin A1C is a number that they use to measure what your blood sugar has been running over the past 3-4 months. I know that number (mine was 10.3 - ave. is 6.2 I have been told anything over 7.0-7.2 you are diabetic), along with my blood sugar at the time of my blood work (which was 377), are the things they used to diagnose me with diabetes.
It is okay to be nervous and upset, but I would hate for you to think that it is all downhill from the point that she is diagnosed with CFRD (IF she is diagnosed with CFRD). So long as you can keep it under control and keep her sugars in normal range there is no reason she shouldn't continue/start to grow and thrive and gain weight and so on. It may be rough at first getting adjusted to the new routine, but you will be able to handle it. That is one thing about Diabetes vs. the CF. Diabetes can be mastered - you can control it and keep it from being a nuisance with proper care. With CF sometimes you do everything you are supposed to - everything you can think to do and CF still causes problems it still makes you sick and so on. It may be a challenge at first, but I have complete faith that you can handle it and handle it well.
Take Care and please let us know how her test goes.
Lindsey
