Sorry, guys. My live-in nanny and night nanny are currently on vacation, so I haven't had time to blog! Bummer.
The drama swirling around this week is that one of the kids' friends from school is in the ICU. Her mom is a teacher at the school and also lives in our neighborhood and the kids really like this girl. She's been sick a lot for the last three months, and she got really sick at the beginning of this week. She was vomiting. Turns out when she got to the emergency room that she was almost in a diabetic coma. She was diagnosed yesterday with juvenile diabetes.
This came so out of left field, we were all in shock. Up until 3 months ago, this child was the picture of health. She's super, super athletic.
So all the kids in the school were writing a Get Well card for her yesterday. The whole school is worried.
Gregory and Sarah's teacher has juvenile diabetes. She was diagnosed when she was 20 and she's in her late 50s now. So she's been dealing with diabetes for over 30 years. She recently got the new pump 6 months ago and she said it has changed her whole life. She's said it's the best thing that ever happened to her.
From what I heard *THE* pediatric endocrinologist came in to the ICU room and told the mom, "Don't worry. You don't have to change anything you do. Diabetes is not going to change your life at all."
If you currently have a child with diabetes, can you verify that your life hasn't changed AT ALL?????? Ha ha ha ha ha HA!
I'm not sure why he's setting them up for such an unrealistic expectation. Their lives are going to change. I'd already by in at least 5 support groups. I immediately texted my friend Erika when I heard that one. Her daughter has been dealing with diabetes for several years and Erika is a trooper and on top of it and they still struggle weekly to keep the blood sugar regulated. It is a full time job.
This just highlights how stupid that woman was in my last post when she said she wanted to post her "happy ending" when she has 6 month old babies.
Do you know when you have a "happy ending"? When you're dead. That's when there's an ending.
Meanwhile, every single one of us could hit that wall going 90 miles an hour tomorrow. Nobody knows where life is leading them. I sure as heck don't. I just try and enjoy when we are in a lull. I'm thankful to be in between crises this week.
Triplets Plus One = Four Times The Fun: Daily life in a crazy household with four triplets and two crazy parents.
Your life changes. But it doesn't have to be terrible.
ReplyDeleteMy brother was diagnosed at 13 and the advances in the past decade WRT care have been staggering. The research towards a cure is going well.
The best insulins my brother has used, WRT control have been Lispro and Lantus. BUT if one goes with Lantus, talk to the endocrinologist. Splitting the dose in two (ever 12 hrs) offered better control b/c, while it is supposed to be a 24hr insulin, the half life of anything isn't perfect.
There will be incredibly hard days. Control will be difficult (especially during puberty). She will have seizures from lows. It is scary. But it is survivable.
If you get a chance to talk with the family, there are a lot of resources out there for them.
ReplyDeleteConnect them with their local chapter of the JDRF. They do a lot to reach out to families. Also, like Triplet Connection, there is a community and message board for families of children living with diabetes - childrenwithdiabetes.com. Tell them to check it out. It even includes a conference in Orlando every year with thousands in attendance.
Your life won't change??!!. Yeah - bullshit.
ReplyDeleteJim was diagnosed type1 when he was in his 30's. Mariah was diagnosed at age 5. Sarah was already familiar with it from Jim being diabetic and it still rocked their world. You don't have to do anything different as long as you don't consider counting carbs at every meal different, feeling crapy from blood sugar lows different, sticking your fingers with sharp steel 6 times a day different and taking shots multiple times a day different.
It definitely gets easier over time. Like having multiples - it just becomes your new normal. It takes work and dedication to keep your blood sugars under control. Puberty was/is hard for Mariah. She had a really hard time with control as her hormones were changing. When she was younger, there were limits on things she could do (like sleepovers, going to parties alone, etc.) because her insulin needed to be calculated and given. Now that she's older she can do all that herself so it is easier.
It's just a process they'll go through. With proper control life expectancy is no different than anyone else.
I know Sarah would be happy to share any knowledge she has gained over the years. If she's interested in talking to someone let me know.
No family history for this girl? That is really scary. Our elementary school has a high Hispanic population where diabetes is rampant. It's almost always in the family, though. Public health reports state that diabetes is the fastest growing disease, in sheer numbers, in the country. It isn't known why, but diet is one of the considerations.
ReplyDeleteanon-Please get your type of diabetes straight, there is alot of misunderstanding. The kind that is rampant in your school with family history is Type 2 Diabetes. Type 1 or Juvenile Diabetes is an autoimmune disease that wipes out the pancreas and has nothing to do with what the child did or did not eat.
ReplyDeleteCall me stupid, but I've seen parents continue to feed their kids absolute JUNK foods (with Type 1) and then use the insulin to make up for it... I assume that's not good for the kid? Or does it really not matter???
ReplyDeleteLoren -
ReplyDeleteIt is "not good" for that kid just as much as it is "not good" for any kid.
Basically, the child is taking insulin because their body does not produce any. If they were to eat a sandwich on whole wheat bread they would have to take insulin for those carbs just as much as they would for a bag of M&Ms. And if you look at the bag of M&Ms and the packaging on the bread you will see that they are about the same amount of carbs.
The problem is that artificial insulin is just not as good as the kind your pancreas makes. It is hard to take the right amount of insulin and have it work at the same speed as simple sugars. It is easier to have good management of your diabetes the less carbs you eat and the more complex those carbs are.
Also, they've found that psychologically it really puts kids with diabetes at risk for eating disorders later in life to surround their early years with the message of all the foods they CAN'T eat. But I can imagine that would be the case with any child - diabetes or not.
Sara= the doctor told them they don't have to change her diet at all. She'll just take more insulin. I think this guy is a crackpot. It seems to me if you eat low carb and maintain a more level insulin level, you won't crash as much. I know next to nothing, but that's what is flashing through my mind. Having lived with Greg through the whole Atkin's rage of the 90s, I could jump on the low carb diet in a flash. LOL!
ReplyDeleteMichele - you're right, kind of.
ReplyDeleteYou do want to manage the carbs carefully. However, growing kids do not want to go on a low carb diet. What is important is to keep track of the carbs and to try to eat as many complex carbs as possible. You still need the same amount of insulin regardless of the type of carb. However, the complex carbs take longer to digest and give a flatter curve which gives a more even blood sugar and better conrol.
It sounds like the endo is giving her pretty poor advice. There are not too many Pediatric endocrinologists in town - and I've heard that the few we have are not so good. I'll ask Sarah who she takes Mariah to. I know she's really happy with the doc they have.
It sounds to me like the endo was saying not to put her on a specialized diet like low carb or Paleo or something radical like that. If the child is eating reasonably healthily and not on a steady diet of chicken nuggets she will be fine. Any diabetic educator and nutritionist would say as much. But it is not always straightforward or easy to figure out. A small piece of whole wheat bread will raise my girls' blood sugar more than a bowl of ice cream. This disease has a fairly high learning curve and can be traumatic for child and parents so I am sure he was giving them SOMETHING to be hopeful about. The parents are stepping into their role as their daughter's new pancreas and it can be rough. The point I was trying to make earlier about the difference between Type 1 and Type 2 is that most people think that my 29 pound 4 year old girls have the same diabetes that their 60 year old overweight Aunt Marge has. And they make sure to tell me that she went blind and had her foot cut off too. You don't get Type 1 Diabetes by eating too many Twinkies. The body simply decides to attack itself and destroy the pancreas, and with it the ability to produce insulin. So you are completely insulin dependent for life. Ok, got that off my chest! My heart goes out to the little friend and her parents. Sometimes the hospital will have a support group with sponsored activities for the whole family so the kids know they are not alone with this disease. Also, the Diabetes Online Community (blogs)is a great resource.
ReplyDeleteMy son was diagnosed with Type 1 at age 13, he's now almost 22 and about to graduate from college. He's played football, was active in scouting and has done absolutely anything he wanted to do. He eats whatever/whenever he wants and uses an insulin pump. Just like with any disease, there are those who have more issues than others. The family will learn over time what works for them and what doesn't. Hopefully their insurance will allow them to get a pump sooner rather than later as I truly believe that works best for children. I also have a 12 yo niece with Type 1, she has a pump and is doing great. It is a shock when it happens, but they can be so horribly sick right before the diagnoses that you are just happy to have them feel better!
ReplyDeleteThat doctor was an idiot to say that their life won't change. We have a diabetic CAT and our life has changed.
ReplyDeleteOur kitty has to have insulin twice a day at the same time every day, eats special food, has to have her blood sugar levels checked by the vet often, we monitor her weight and her water intake.
How much more involved it is with a child I can't even imagine.
First thing I would do is find a better doctor.
What a joke...when my mom was diagnosed with Type 2 when I was 12 MY life turned upside down. The changes in what she needed to eat (while not drastic compared to what we were already doing) changed the way all of us ate, it was a big change. I learned really quickly what brought her sugar back up quickly when she was having a low and exactly what her numbers meant. Yes type 2 is different than type 1, but I echo the other poster who mentioned the Lantus. My mom also takes it in 2 doses during the day and it is by far the best drug she has been on, but they need to do what will work best for them. Not changing diet at all sets the kid up for not really understanding what foods will cause highs and how long between eating will trigger a low. Living with diabetes (type 1 or 2) changes your life and not just a little bit. I think the doc is a whackjob who is giving them unreal expectations of what this will mean for the rest of their childs life.
ReplyDeleteI read your blog, but have never commented... my daughter was dx'd with T1 at the age of 12 months. I'd like some of whatever that doctor is smoking, because life WILL change and it will be HARD. But you learn to deal and move on.
ReplyDeleteAs far as the low-carb/no-carb/some carbs thing, the commenter who said you should not restrict carbs to a growing child was bang on. Kids NEED carbs to grow. We let our daughter eat everything we eat (we have a saying in our house - there are only two things my daughter cannot eat... poison and cookies. Made with poison). That being said, we don't eat stuff with HFCS, or artificial colours, etc. etc. We try to eat as naturally as possible, but if we're at a birthday party... she WILL eat cake. I never want her to think she can't do something (yes, even eat a cupcake) because of diabetes.
And with foods that she sees other kids eating that we don't eat in our house I tell her, "just because you CAN eat that, doesn't mean you SHOULD." I stress that it's NOT because of her diabetes.
When the mom is ready, tell her there is a whole community of support online for her called the DOC. I blog about having a child with T1 and there a a ton of other blogs too. The best support system I could ever ask for.
Sorry for the novel, it's something I am very passionate about.