Joshua was diagnosed a couple of weeks ago with type 1 and is moving forward rather well. Type 1 does not run in my husbands family or mine so this is a little overwhelming. We have focused on a very matter of fact approach and I'm glad we have. No screaming, crying, freaking out, just talking every angle out. He is the only one in our school from prek to 2nd grade. He is also involved in sports and has done really well w/being pulled a side during practice to be tested. He's a smart little boy with statements/questions that have broke my heart, " I don't think anyone is going to love me, no one will want to marry me" He is seven! We talked it out and by the end he was laughing. It's so hard to keep it together. I'm in real estate so I have the flexibility to be home w/the kids. I just feel so consumed diabetes. I'm keeping my cool around everyone, but what I really feel like doing is freaking out! When I'm not interacting w/the kids/husband/friends I am researching. I want to know as much as I can, if something happened(physically, emotionally) to my boy because of my lack of knowledge I would never forgive myself. So, with that being said, can anyone give me any advise, info, anything that was helpful in the beginning? Thank you, thank you, thank you in advance...
It's such a whirlwind when first diagnosed and your strength is amazing. The beginning is definitely the hardest as diabetes is not an exact science. Joshua most likely will be going on an insulin pump soon (as is my five year old son) and with time and your intelligence (researching EVERYTHING is great ), hope will be omnipresent.
My son was diagnosed when he was 3 years old and I still remember the beginning as a very scary time. I too had no idea of anyone with Type 1 Diabetes..heck I really didn't even know the difference between Type 1 and 2 for that matter. But as I look at my five year old who will be entering kindergarten next year and his strength and courage in the face of Type 1 Diabetes is amazing. I'm sure Joshua (as is your whole family) is still in shock, but in time, you will find so many others like our children - with wisdom and hope beyond their years.
So, if you ever need to vent or to email me, please feel free. My name is Joyce Wachala and my email is email@example.com
I don't remember being diagnosed, but I know my mom struggled a lot at first. She had just had my little sister, and she once told me she heard Rachel cry and didn't know whose baby it was at first she was so preoccupied making sure 1 year old me wasn't going low. The best advice I could give is to know you're not alone. I think all parents of type 1 kids feel overwhelmed. Try to find a support group and/or people you can talk to about the stress. My mom went to see a therapist after I was diagnosed to help her deal with everything. The next thing to know is that everything will be fine. I did research on diabetes for a project earlier this year, and I cried over my diabetes for the first time since elementary school. The websites can be scary, but that doesn't have to be the reality for everyone with type 1. If he stays under good control, he will be fine. There are people living happily and healthily in to their 80's that were diagnosed when insulin was first introduced, before blood glucose meters were invented. Even in the almost 19 years that I've had diabetes keeping under control has gotten easier, both because I knew what to do, and because technology is amazing! When you're doing research be sure to look at the options for managing diabetes. I don't know if they have him on injections right now or if they put him on an insulin pump right away, but I would highly recommend the pump to anybody. It has made my life so much easier. MiniMed (www.minimed.com) has a combined insulin pump/continuous blood glucose monitor system that I know works really well for some people. I have their pump, and love it, but the CGM more or less drove me nuts since I had to change the way I did everything, and lets face it I'm stubborn and set in my ways! On the other hand, a friend of my mom's absolutely loves hers and can't understand why I gave up on it. The best thing you can do is to find what works best for Joshua and his diabetes, because no two cases are identical. I know when I was little it helped that I had a friend who was diabetic. See if there is a diabetic summer camp near your home or somewhere that he could meet other diabetic kids. The Lions organization runs a really good one in Wisconsin and I know they have other camps set up elsewhere. I hope I helped some and didn't scare you or add more stress to you're life! Feel free to write back with any questions for me or my parents. If Joshua wants he can write/ask questions too. my e-mail is firstname.lastname@example.org
Hi. My daughter age was diagnosed Oct 2010 at age 8. The first insulin therapy was humalog and humalin - set carbs to eat and eating all day long... plus a bedtime snack. My daughter could not stand all the eating. Then we switched to Lantus at bedtime and the Humalog for meals/snacks. So much more flexiblity and no demands on the clock or eating amounts. We are looking into the pump this summer. I sent for info on the Omnipod. It says no tubing and it has a cgm built in. Sounds nice but we'll see.
Scarey part for us is bedtime (well it used to be before the Lantus). I used to get up to check her every night for fear she would go low. I honestly say a little prayer every night and morning that she will wake up when I open her door. She's had bedtime lows of 40 and did not know it - that's not good. During the day she can recognize when she is 70 but not when she is sleepy.
We did connect with another girl in our area and it may the world of difference in her confidence. I highly recommend doing this. You are way ahead of me in research - I just found this site this week! Best wishes. Glenda
First of all, I am so sorry for your son's diagnosis. Type 1 diabetes is a difficult chronic disease to learn to live with, but the important thing is that he CAN LIVE with it. My son was diagnosed in May 2009. It is especially consuming at first. Everything you wrote about feeling is very normal. I was like you and tried to keep it all together and eventually I couldn't do it anymore. It is OK to be sad about it! Being able to share those feelings with your husband, family or close friends will be important to maintaining your sanity. And it is OK to be by yourself and figure out a way to let out all those feelings of anger and confusion and frustration out in a physical way - throwing water balloons at the side of your house or screaming in a pillow or digging a new garden by hand, etc. Bottling up the feelings will just make it so it takes longer for you to adjust to this new normal.
Also know that mistakes will happen, whether you know better or not. The important thing is to figure out what went wrong and to learn from it, and then forgive yourself (or your son or your husband or whomever) for it. But diabetes is unpredictable and even when you do everything 'right' the numbers can still be all over the place. Remember you are a mother, not a pancreas. It is never going to be perfect 100% of the time and you can't beat yourself up when it isn't. One thing that helped me was to learn that if you have even 50% of his BG readings in his target range, you are doing a good job.
And so far it sounds like you are doing an AWESOME job. It is so important to talk with our kids about their feelings, and in my opinion, it is perfectly ok for them to see us cry and be sad about diabetes - especially if they come to us and are sad about it. Also, it seems like you are letting him be a kid and managing his D around it. That is super important.
A couple recommendations - get the book "Think Like a Pancreas" by Gary Scheiner. It does help in your new role. And also check out the Diabetes Online Community. This is one blog about a mom with a 7 yr old too http://betabuddies.blogspot.com/. And there are many other great blogs out there. You are not alone!
It will stop being so overwhelming at some point. Do you remember learning to drive and how you took drivers ed and studied for the driving test and had to keep reminding yourself to check your speed... keep your lane... check your mirrors. But after experience with it you can drive almost unconciously, though you still have to beware of trouble. Managing diabetes is the same.
Tell your son I never had someone not date me because of my diabetes. I'm married to a nice man and have a son of my own now who's not diabetic.
I've never had perfect control (and was a total mess as a teenager and young adult) but after 33 years with diabetes I have no complications.
Another book recommendation that will help you if your son continues in sports is "The Diabetic Athlete" by Sheri Colberg. She's a type 1 and exercise physiologist, just like Gary Scheiner who wrote the "Think Like a Pancreas" book.
Hi and welcome!
I was dxd at 6, and I remember being 11 or 12 and worrying that nobody would love me too. I had recently gotten a pump, so I thought being attached to a machine was a love death sentence.
To help put it in perspective for your son, ask him if he knows anybody with asthma, or who has food allergies. While these are completely different, I am sure they cause similar anxiety in children, for instance many schools make kids with peanut allergies eat at different lunch tables. He may not know other diabetics, but reminding him that other kids have other things that make them "different" may help relieve some of his fear.
I was involved with sports and other school activities all through high school and am getting married in August to a fabulous guy who thinks my pump is kinda cool and calls me his bionic fiance. He is super supportive and my diabetes doesn't bother him a bit other than that I never keep cookies around, which I tell him he will appreciate later.
It is scary and overwhelming at first, but it will get easier. You sound like you guys are doing a great job :)
I was diagnosted with Type 1 Diabetes when I was 6 years old - I know how hard it must be for your son and your family right now. The best advice I can give you is to remember is that (though it may seem like it at times) it is not the end of the world. One of my mom's biggest worried for me was that I would never have a normal life. I mean, I had my rough patches - coming home after school crying because I couldn't eat the cupcakes my classmate brought for her birthday, getting upset over having to stop playing to test my blood sugar, feeling the pain of insulin injections, knowing that I wouldn't be able to ever get rid of this disease - but I have made it through those. I am now a 20 year old sophomore in college. I excercise daily, have a great group of friends, am in the honors program at a Big Ten University, and live 4 hours away from home. All while managing my diabetes. I'm a normal college student, except I have to watch what I eat a little more carefully and have an insulin pump constantly attached to me. In fact, I credit being diabetic (learning to take responsibility for myself at a young age especially, knowing that if I don't take care of myself, I could get sick) for making me independent and hard working.
Some things that might help your son:
-Give him responsibilities. Instead of measuring out insulin for his pump or injections, ask him to help you count carbs and calculate how much insulin he needs. If he feels like he knows what's going on with his diabetes, he will feel less helpless and consumed by the disease. This will also help him be less dependent on you when he is older.
-Try not to make him feel "different." During elementary school, I would have given anything to be just like all of my friends. I know it's impossible to not make him step aside to test his blood sugar, but try to remind him that he's still a normal kid.
-Don't emphasize what can happen later in life. Every diabetic knows that diabetes can lead to complications (kidney disease, eye problems, etc) but it's scary. He shouldn't have to deal with that until he's older.
-Make him feel special, especially during holidays/activities based on food. During the first few years after I was diagnosed, my parents knew that Halloween would be a hard holiday for me to deal with because while my brother and friends could go trick-or-treating and eat all the candy they wanted, I could only sit and watch. Instead, I would go trick or treating and, when I came home, I would give all of my candy to my brother. In exchange, my parents would give me a few dollars to buy something I wanted or a different small gift. This made me feel special, not like I was missing out on a typical childhood experience.
-Be prepared for questions from other people (some legitamate, some just plain stupid). I am always willing to answer questions I've received about diabetes because most are out of complete curiousity. When I was younger, though, my mom got calls from parents asking if diabetes was contagious. She also got asked at pools why her 11 year-old daughter was wearing a birth control patch (referring to my insulin pump without the cord connected).
-Stick up for your and your son's rights. I had teachers that would tell me I could eat certain foods that I knew were not ok (I was on shots, and eating a classmate's birthday cake would have sent my blood sugar levels extremely high). Make sure your son knows what he can and can't eat/do, and encourage him to stick up for himself even if an adult tells him otherwise. I have also been told that I cannot bring food into theme parks or other venues(one time I was even asked to prove that I was diabetic so I could bring in fruit snacks), but if you that you need it for health reasons, it's usually not a problem.
-Get involved. There were very few diabetic children in the town I lived in, so every year my mom and I organized a team for the Walk to Cure Diabetes. I loved seeing everyone (especially my friends and family) come together to fight against diabetes. I have also been involved in the Spring Gala, Halloween Party, and Easter Egg Hunt, all put on by my local JDRF chapter. It's nice to know that you aren't alone in the struggle (I still get excited when I see a classmate test their blood sugar before an exam or see someone walking around campus with an insulin pump :D)
Wow. That ended up being a lot longer of a message than anticipated. I hope you find at least something helpful in it. Good luck to you and your son!
i found out about the same time as your son that i am type 1. i'm 19, off at college and living on my own. luckily, i've adjusted well but still its been a life changer. it's been hard without having someone to help me but there is lots of support on this site. so although i cant give you any advice with your son i do know he is very lucky to of found out now instead of my age. you'll have good days and you'll have bad days but dont let that discourage you. i've never been a big meat eater but since my dx i'm always snacking on beef jerky and slim jims. i hope you have lots of luck with your son and comfort for you!
WOW, thank you all soooo much for your feedback. It really did ease my mind and the feeling of being alone was definitely lightened. So much great advise I feel empowered!!! Thank you all soooo much...