Our 4 year old daughter was just diagnosed November 28th.
The shock has worn off, and it seems we’ve even made it through her honeymoon
phase and even her first bought of a stomach bug. I’m not saying we’ve got it
all figured out, but we made it through the first month which was awful. We’ve
been doing a lot of reading, and of course there is a ton of unsolicited advice.
I’m wondering for those of you who have already been through
it, if there are things you wish you would have known in the first year that
you’ve learned since there. To be perfectly honest I am hoping to use your
experience to make my daughter’s life, and of course my family situation
better. Any advice would be greatly welcome.
I would make sure you join the Parents of Children with Type 1 forum http://juvenation.org/groups/parents_of_children_with_type_1/default.aspx
You can read through the posts and replies that will offer lots of suggestions.
Things I wish I would have known, there are probably hundreds, some you just have to learn on your own, but I think the biggest is to make sure your child is a child first, and has diabetes second. Manage the diabetes around the child's life, don't keep her from doing anything she wants to, just figure out a way to handle her D-care. Sometimes that will require that you take a leap of faith in someone else but it is worth it so that your daughter's life is not defined by Diabetes.
Second, remember you are a mother (or a father) NOT a pancreas. There will be times she has numbers that make NO sense. There will be times that you forget to test or forget to give insulin. It is NOT worth getting upset about this. Just recognize it, deal with it and move on.
Third, I had NO IDEA how emotionally challenging having a chronic disease can be before my son's dx. If you haven't already, you will probably grieve for the loss of your daughter's perfect health. THat is healthy and normal. I truly believe it is OK and healthy for your daughter to see you cry and be sad and to be honest that you wish that she didn't have diabetes. I think this has taught my son that is is OK to tell me when he is frustrated or sad about diabetes too. Which hardly ever happens, he is 5; but there are times where it will suck and you will both be in tears. I really think these times are building blocks of trust and an emotional bond that we will need to rely on in the future.
Finally - JUVENATION ROCKS! It is so great to have a safe community of people who really understand what you and your daughter are going thru and where you can come to vent or ask questions or celebrate successes! Cause most of your FB friends really won't think it is AWESOME when your daughter's A1C drops. Welcome!
Just wanted to say Welcome!!! Sorry to hear we have another member of Club 1. You have found a great place for us members LOL. Sorry I won't be much help. I am example of how Club 1 is open to all. I was dx'ed at age 52 about 21/2 years ago.
Again glad you found Juvenation!!! Welcome!!
I was also diagnosed at age 4 and am 37 now. No complications and I have a great husband, a 5-year-old son, and busy job.
At the beginning I think it's important to know your child isn't a statistic. Everyone has a very different experience of diabetes, but most of us are just normal people living our lives. I think it's also important to seek out the best medical care you can find, like a pediatric endocrinologist. Over the years I've been surprised at how many well-meaning general practioners have really outdated ideas about diabetes management.
Also know you'll never have it all figured out. Insulin doses, diabetes technology, causes of high and low blood sugar, symptoms of low blood sugar, and other things will change often. Someone posted online that managing diabetes is an art, not a science. The good part about that is it will make your and your child very quick and creative problem solvers.
And last, make sure to find a diabetes summer camp when your daughter gets a little older.
Try to learn all you can. Try not to lose your mind with worry. Take one day at a time. Think like a pancreas is a really good book for helping to figure out the weird little things that mysteriously happen with blood glucose. Visit here often.
We have been blessed with great care. We live in a town of about 35,000 but there is a great diabetes center here, with many educators, nurses and of course a wonderful endocrinologist who we already knew through Church. We spent three nights in the hospital when she was diagnosied which was great becuase we got a great deal of education before we were on our own.
The things we really struggle with are dealing with mood swings in a child who used to always be extreamly happy and very easy to handle. I don't know how to make the shots work, but it's such a fight. We did win the first battle which was switching to insulin based on her food, and not food based on her insulin as the hospital insisted on. That has at least ended most of the dinner time battles.
It's funny when we look back 6 weeks we really have come a long way. I just know it's till a long journey.
It sounds like you're doing an amzing job adjusting under tough circumstances of this disease. I'd say hang in there and take it day by day.
I was diagnosed in 1982 at age 4. With all the focus on food with this disease (e.g., how much will you eat? you need to eat more if you just took insulin! you shouldn't eat that! you're high/low -- you need to eat less/more), I developed very unhealthy relationships with food as a teenager. (I'd hide in my room eating unhealthy food and lie to my parents, eat to deal with stress, etc.) I'd advise to try as much as possible to make food a normal/enjoyable part of life. It's not always possible, but it's something that would have helped me growing up...
I wish I had've known how fantastic a pump is! I was diagnosed in December of 2009 and didn't get a pump until November of 2010. Now that I am on it I am wondering why the heck I didn't do this a year ago! It's the best thing ever! It's made my life with diabetes so much easier and I haven't been nearly as stressed. Not to mention my numbers are doing better! A pump is a personal choice. Some people don't like them. So it's up to you (and your daughter) but for me it's been a great decision and I honestly should have done it sooner! I am on the OmniPod, which is a tubing free insulin pump. You can get a free demo pod at their website.
I would also get your daughter a medical ID bracelet. I didn't like the thought of them at first. Wearing that ID tag made me feel like there really was something wrong with me. But then I heard this story about a type 1 diabetic who was out shopping when her blood sugar dropped and she passed out. She was wearing a bracelet and someone noticed it and took action to take care of her. If she wasn't wearing that bracelet, no one would have known what was wrong with her. It made me realize there is nothing wrong with wearing a medical ID. It's only for your benefit. I am 19 and out on my own plenty so if something happens and I pass out then I definitely want people to know I am a diabetic. Here is a great website for them: www.LaurensHope.com
Also, I carry around a glucagon shot with me at all times. I didn't start doing this until about 3 months ago, but I also found out this is important. If my blood sugar drops so low that I pass out and cannot take care of myself, someone around me has to inject the shot.
Really, if anything, I wish someone would have just told me to take a deep breath and stop stressing. I was 18 when I was diagnosed. I was just learning how to be an adult and take care of myself. I had bought my first house and first car and then suddenly this life long disease was thrown into my life also. I definitely took it hard. I was very depressed and very stressed. I had all these new fears like- What if something happens to me? What if I don't live to be old? What if I can't ever become a mom? Finally I came to a realization that this isn't the end of the world. I am doing FINE now. Better than ever! I took control of my diabetes. My health is great and diabetes isn't going to stop me from anything. I plan on living to be at least 110! LOL So although I know this has to be incredibly hard on you and your family, just remember to take that deep breath and relax. It may be a lot of work to keep tight control of those numbers, but it CAN be done and your daughter will be just fine.
My advice would be to make T1D fun. I know that sounds silly, but T1D will only be a big scary deal to your child if you make it one. You are the parent. You decide what's for dinner, how she exercises and what extracurricular activities she participates in. She won't know the difference between before T1D and after T1D if you don't make a big deal out of it. Children respond to the emotional queues of their parents. Taking shots is traumatic don't get me wrong, but let her be involved. That way she has some control over what is going on in her D-care. Let her pick where she wants her shot, which finger to prick. I know kids throw tantrums and think your mean for making them do all of this, but you just have to love them through it. Let them know they are special because they have whole team of adults that exist to make her life healthy. Kids like to feel important. After you give her the shot give her kisses to "make it better" you know positive reinforcement goes a long way. That way when she is older she won't rebel against her T1D.