Tuesday, July 29, 2008

Juvenile Diabetes: A followup

Last week I posted a link for recipes for people with Diabetes. I mentioned my niece who has Juvenile Diabetes (Type 1) and many of you emailed me privately, and also left comments asking why my nice doesn't use a pump to manage her diabetes. So, I emailed my sister and asked her to address this question, because while I knew she had a good reason why, I didn't exactly "know it" (my sister and her husband are really on the "cusp" of research, so she wouldn't NOT do the pump without a good reason). She is very knowledgeable about this disease, and has gone to great extent to micro-manage my nieces sugar levels... but many people are not aware of what "good numbers" are -- so here's a brief explanation (my own layman understanding) followed by my sister's answer to the whole pump question.

A blood glucose test measures the amount of glucose in the bloodstream. There are several different types of glucose tests:

  1. The 'fasting blood sugar' test checks glucose levels after an eight-hour fast and is often the first test performed when checking for diabetes. For this test, levels have to fall between 70 and 99 in order to be considered normal.
  2. The 'two-hour postprandial blood sugar' test measures glucose levels two hours after eating a meal. Normal glucose levels for this test fall between 70 and 145.
  3. Random and daily blood sugar testing checks glucose levels randomly throughout the day, regardless of meal times. Blood sugar levels should be between 70 and 125 in order to be considered normal for random testing.
  4. The A1c test is used primarily to monitor the glucose control of diabetics over time. It is NOT a fasting test and can be ordered at any time of the day. The A1c test is frequently ordered on newly diagnosed diabetics to help determine how elevated their uncontrolled blood glucose levels have been, and can the test results can tell how your blood glucose levels have been for the past three months. It may be ordered several times while control is being achieved, and then several times a year to verify that good control is being maintained (you can "fake out" a fasting blood sugar test, or even the random and daily blood sugar tests, but you can't "fake out" this test). The closer a diabetic can keep their A1c to 6%, the better their diabetes is in control.
In my sister's response below, she mentioned that my nieces blood sugar was close to 700 -- this is very bad, very dangerous. In Type 1 diabetes, ketoacidosis can occur whenever insulin delivery becomes interrupted for several hours on a pump, or after a day or so of missed injections. It can also occurs under the duress of an infection, and is also frequently present when a person first comes down with the disease between the time when they stop producing their own insulin and begin to inject insulin from the outside.


So -- now that you have probably more information than you care to digest... (which is helpful for anyone who suspects their child has juvenile diabetes, or for anyone who is just plain curious) here is an explanation from my sister in her own words as to why they do NOT use a pump (she writes very well!):

Adrianna (and many others in personal emails) said...

"Have we considered a pump?"

We have a pump!!!! But Lexi hates it. :( For some odd reason she takes issue to ANYTHING coming near her abdominal area. The infusion for the pump must be connected in this most sensitive (to her anyway) area. She was quite insulted when the nurse educator told her that this area is actually the least sensitive area. For three months we gave this pump a try but the only "rewards" we got was a miserable child who would literally cry for 2-3 hours each time we had to change the infusion. Worse, some mornings she would wake up and the infusion would have some type of "kink" leaving her with elevated blood sugars (happened too often) so we would have to quickly change the site before school (not a pleasant task).

We tried so, so hard to adjust to the pump. We all really wanted it to work! But her blood sugar averages had actually gone UP! Her average A1C (see above for an explanation) is 5.9 - 6.1 and she went up to 6.8 (low for most type 1's but high for her). However the final straw was when she woke up one morning and we found the infusion had at some point during her sleep, come out. Her blood sugar was close to 700 (again, see explanation of the dangers of this above). It took a period of 30 hours and HUGE amounts of insulin to finally bring it back under control. I had visions of DKA (she was close to death) and her diagnosis day (five years ago) floating through my mind..... "No Lord, not again!"

She was, of course, fine, but we thought maybe she/we aren't ready for the pump. So there it sits on the shelf... collecting dust ... the most expensive adornment in our home. How's that for a well spent $8,000. She actually doesn't mind the "pain" of the shots; just that the shots are a "pain in the neck."

We have such wonderful control of her diabetes because we dilute insulin so we can lower her blood sugar by as little as 10 points and she eats, for the most part a relatively low carb, or rather "right" carb, diet. She never eats more than 15 carbs at breakfast, 36 at lunch, and 24 at dinner. Of course, there are snacks and fun days and we find small treats to incorporate DAILY so there's no deprivation.

It's not fun, but it's manageable and y'all are so right when you say that diabetes care is so much better these days. My husband reminds me to be thankful that this is what she has, because it could be so much worse.


In closing, I just want to thank my sister for her response to this question. As an adult, 40 years old... I can personally say that there just isn't enough education on this horrible and currently in-curable disease. It is a life-changing condition that can NOT be ignored, whether it is juvenile diabetes or adult onset diabetes.

I read on a blog somewhere that saying you it's okay if you have just a little bit of diabetes is like saying it's okay if you have just a little bit of cancer. It's that serious, and awareness is the first step in keeping yourself and your children healthy.

As Americans, our diets deem to be so full of hidden sugars, refined sugars, flours, and so forth. We are, for the most part, a nation with un-healthy diets and eating habits. I don't know about you, but when it comes to my own diet, it pretty much sucks... I'm far more lax on what passes through my lips, and I'm quite cognizant of that. But when it comes to my child's diet -- I'm far more obsessed about making sure he eats healthy, because I don't want him to learn my own bad habits.

So, in closing... I want to throw out a few questions for all of you to think about. You can leave a thought or even a discussion with your answer(s) to these questions in my comment section, because honestly, I'd love to hear your thoughts!!

1. How do you feel about our nation's diet as a whole?
2. How do you feel about the nutrition in our schools?
3. What do you do to control your child's diet?
4. Do you find you are more strict on your child's food choices
than on your own?
5. How would you feel if you or your child were diagnosed with diabetes?
6. What types of healthy snacks do you give your family to enjoy?

Please leave a comment!


Sandy said...

Hi GiBee, I think everyone in America needs to see the movie, Super Size Me. I can bet that American homes will change the way they cook and eat.
I do know diabetes if a horrible disease. Working w/kidney pt's for years, it's devastating!
I know this post will be helpful to many! Oh, and snacks? I try to stay healthy but we do have a hard time w/sweets, cookies, etc. Just being honest ... (chocolate!)

Barb said...

My comment is simple, GiBee. As you know, my grandson Cameron was diagnosed with Type 1 juvenile diabetes just before he turned two years old. He just turned three. And in one year our whole family has become extremely educated about jd. I knew every single thing you and your sister said in this post.

But most people don't. So I'm going to do a post at my site, linking to this post because knowledge is everything - it's absolutely everything and this post is one of the best I've ever read on the subject.

Thank you so much for putting this information out here.

Christine@AreWeThereYetMom said...

Bless your sister's family's heart!

It just happened, I'm bloggy carnival hopping, and found you through Diaper Diaries.

My son has been a Type 1 Diabetic, since he was 3 1/2, so I KNOW exactly what your sister is going through. There is a special place in heaven for us mother's of young diabetics.

This December will mark the 5 year anniversary, of his diagnosis, and to tell you the truth, we didn't get on the pump right away, because I wanted to be comfortable learning all I could about Diabetes, and how my son's body reacted to foods vs. insulin.

He has his days with the pump that he's not happy with, but in a whole it's been a blessing. It is expensive, and not everyone has the resources available to them. Even with an 80/20 insurance we paid several thousands of dollars for one.
There are several cons to the pump, not knowing how much insulin my son actually got, if something happened to his insertion site, and not all the insulin got delivered.
The top pro one being the flexibiliy, it offers. All mothers know that children love to snack, and I got so tired of giving injections six to eight times a day,or asking him to wait another hour until lunch.
I applaud your sister, those are excellent A1Cs. My son has been holding steady at under eight for almost a year now, his doctor assured me this was normal for his age, BUT lower is always BETTER!

Keeping on top of good numbers, I've had many sleepless nights, and I am sure your sister has too. Thank you for the WFMW low carb recipes, good eating habits are so very important.

If your sister has internet access, I found some wonderful resources through Diabets Mine, and the OCC blog ring of Diabetics.

Sorry for the long post, but if your sister has any questions, I would be happy to answer any, or just needs an ear to listen, I'd be happy to help.

I know she's doing a wonderful job, I can tell, because if she's like you, and you understand all this info about Diabetes, than you are well on your way to excellent diabetes management.

Good Luck to you and God Bless!

Anonymous said...

I think that this would be something very appropriate for your website to talk about. A very young girls' soccer team played in a league that they dominated. The girls won every game, even against other girls that were older than them. Their coach made a bold move and put them into the boys league. This was met with some criticism, but as the girls did exceptionally well, it made people stop and think about what was fair and right concerning girls and boys. The main girl in this film has juvenile diabetes. She demonstrates that people are very able to live a normal life even with diabetes. And the film also teaches that people should not be discriminated against based on gender, and these girls overcame that discrimination. Watch the trailer at www.kicklikeagirlmovie.com and see what you think.


Alayna Ferrin
Public Relations
Cobalt Communications Group

e. alaynaf@cobaltcg.com

Anonymous said...

700 is extremely high and you are correct very dangerous.

I am type 2 plus I have Polycystic Ovary Syndrome not making excuses but my hormones are a mess and it is so hard to lose weight. I finally did find an aggressive diet that does work but I need to get disciplined and just do it. So I am gulity of not eating the way I should. I think most Americans today eat too much. Our portion sizes are at least triple of what they actually should be.
Schools - they do not feed the kids a healthy lunch. The choices are what is least expensive and easiest. My son is 26 now but when he was younger I would give him fruit and ceral (like cheerios to snack on) rasins etc. But he did like as he got older McDonalds. The difference between eating healthy and not is planning.