All, my son who is 6 years old was just diagnosed with Type I this week. It has been such an emotional and overwhelming week. I feel like I’m drinking from a Diabetes fire hose. Sometimes, my son takes his shots like a champ and other times he runs away and cries. I know I need to be strong for him, but it is so hard. I know it will get easier. He’s a growing boy so he eats a lot and often he wants more food after we have already counted his carbs and give him insulin. I’m also trying to figure out his blood sugar and how his school activity is affecting it. Does anybody have any advice? Any thing I should focus on right now and just put everything else aside?
Welcome to the club no one wants to join! I am sorry to hear that your little boy was diagnosed with T1D. Diagnosis time is always the toughest. You’re so right; it’s a very steep learning curve at the beginning. But it does get easier. Never easy, but easier.
I know you and your son are new to the D-world, but have you considered an insulin pump? My daughter has always been a grazer, and pumping changed up to 10 or more shots a day to one stick every 2 to 3 days for pump changes. Also, getting the least painful lancing device can help. Check out the MultiClix lancing device by AccuChek.
The piece of D-tech that is the biggest game-changer, however, is the Dexcom CGM. There is nothing that compares to knowing what your child’s blood sugar is every five minutes and where it is heading. The Dexcom CGM lets me get more sleep at night because it alarms when my daughter’s blood sugar wanders outside of the parameters I’ve set.
You may also want to check out the Parents of Children with Diabetes Forum. I’m on my iPhone right now, so it’s too difficult [I’m too lazy] to post links, but they’re easy to find if you Google it.
Hang in there! You will find lots of information and support here on TuD and over on Parents of Children with Diabetes.
i am so sorry about your son´s diagnosis. i was diagnosed with t1 as an adult and have no D kids so have no advice for you, but sending good vibes to you both! you D parents are true heroes. it is a daunting task but you can do it! big hugs xxx
Oh so sorry to hear that. Our daughter was diagnosed a month before she turned 6 and has now had it for almost 3 years… phew! And it’s so true, at the beginning everything is hard, it is hard on your child and it’s hard on you! Not to mention how over-whelming it is learning how to count carbs and check blood and give injections, all the while adjusting to this new reality and trying to rebuild your world with diabetes in it!
So I would say to just take it day by day, sometimes minute by minute and and just stay the course, and you will be surprised how quickly it just becomes a ‘normal’ part of your life. And for our daughter - the injections and blood checking was often a battle for the first 6-8 months. Mornings were better but by dinner-time she wanted none of it. We just had to be patient and understanding and kept putting ourselves into her shoes, and eventually we would get the insulin into her. Think of it as a team effort and never make it as a you vs him kind of thing. It became easier as time went by, and after a year we switched to a pump (in Ontario, in Canada, you can get government funding for a pump after a year) and the pump was definitely easier - we went from 4 injections daily to one poke when we changed her infusion site for her pump every 3 days.
I would also say to educate yourself on type 1 as much as you can. Not only will it make it not so scary - but it will also help you to deal with the people in your life who are going to confuse it with type 2 and give you a hard time… we had to educate our family a ton but it was worth it.
Lastly - it took a while but I had to get to a point where I didn’t feel sorry for my daughter… now I still do feel sorry for her of course - I just had to get a point where I wasn’t showing her that all the time. Because when I was showing it , it only made her feel sorry for herself and that wasn’t good. Now she still has her moments and that’s OK - but we face diabetes together as a challenge and that has helped her tremendously.
Find others in your area who have it, pick their brains and in no time at all you will be confident and flying!
I wish you all the best.
I’m so sorry you had to find us, but how awesome that you found TuDiabetes.org so quickly!
My son, Caleb was diagnosed when he was three, he’s turning 13 in a couple weeks. Being that it’s only the first week for you, my advice is take it one step, one day, one blood sugar at a time. I can remember not all injections being met with full cooperation. I found it helped a great deal to give Caleb choices in whatever we could. So, getting a shot - not a choice, but whether mom, dad or self gives it, where on the body to give it are things that he can choose. Even at three I think Caleb felt like he lost so much control and so much choice. To give him control where we could really helped.
Blech - eating and then wanting more. Yeah - that stinks. A couple of options are to inject after eating and you know for sure all the carbs - probably not too desirable of an option. Then of course you could always inject again. Caleb used injections for only a few months before pumping. Although pumping takes a lot of diligence, it does allow for more freedom in when and how much you eat.
Lastly, I would say keep asking any questions you have. There are lots of ways to handle the challenges of diabetes, and there are lots of people to give you suggestions for you to decide what works for you.
So sorry your family has to deal with this. I am an adult and diagnosed with T1D as an adult. But I did parent a daughter who is now grown, so I understand some of your challenges although nor fully from your situation.
I have started listening to the podcast of a father of a T1D daughter, diagnosed at age 2. Scott Benner’s podcasts give great insight to what it’s like taking care of a T1D child. Check out his Arden’s Day blog and podcast. Scott has a great manner and tact dealing with all the issues that are particular to a T1D child and family. Scott is a stay at home dad who remotely manages (using modern diabetes technology) his 11-year old daughter’s diabetes even when she’s away from home whether at school or playing with her softball team.
There are many TuD members, parents of T1D children, like @Lorraine above, that have walked this path before you. They all want to help you.
I’ve lived with T1D for 32 years this month. This disease sucks but there are many ways to make it suck way less. Knowledge is power; learn all you can about diabetes and insulin. You are now in a long game dealing with diabetes. The more you learn the better off you’ll be.
But pace yourself! You have time to learn all you’ll need to know. Learn a little each day and your knowledge will soon surpass many of the doctors, nurses, and diabetes educators that you’ll now look to for advice. Find your peer community, whether it be here or possibly with a group focused on T1D parenting issues. With the advent of social media, peer support has really come into its own. Participate. It will be good for your spirit.
I could go on and on but I’ll stop. Embrace this new life because you not only have no choice but you can help your son live a very normal and healthy life. He can grow to become anything he dreams of being!
I am so sorry to hear of this. Hang in there. I was diagnosed at 11 months old and am now 27. There are times I want to run and scream from poking my finger/taking injections/changing my pump sight. My best advice is to find a really good endocrinologist. I did not have a good one as a child and I think that having a better doctor would have made a huge difference in my life and health. Try to get your son involved as much as possible. I have very fond memories of learning how to do injections with my brother (non-D) on oranges. Maybe you could make a game out of carb counting? My step son (he’s 7) likes to help me count carbs and is always figuring out how much insulin I would need to take for certain foods. (“You’d have to take a whole bottle of insulin if you drank a mug full of maple syrup!”).
Also I suggest trying to find an in person support group for you and your son. Knowing others that are going through this can really help. There are also summer camps (is summer ever going to come back?) for children with T1. I never had the joy of going to one, but I’ve heard great things about them.
Welcome to the club no one asked to join. sometime i wish i can return Diabetes.
I’m sorry for your son’s diagnosis. My daughter was much older when diagnosed, but we all go through the same emotional challenges regardless of our childrens ages.
Early on, everyone told me it would get easier. 7 years later, I’ve found that isn’t really true. There are always new challenges & new things to learn, but you get better at handling them as you learn. It truly is on-the-job training.
Make time for yourself. Take it slowly. Learn as much as you can, but don’t push yourself too hard. It’s a lot to take in.
There are many groups on Facebook for support from other parents. On Twitter, there’s a great group of parents who meet for a group chat (I don’t have the link handy, but look for #DSMA. 'Rents night is great!) . There are many, many parents on childrenwithdiabetes.com. There are also some wonderful bloggers out there.
Thanks everyone for all of the great info and support! I truly appreciate it. I keep remembering to take it day by day. My son is constantly hungry and he’s so frustrated that he can’t eat freely. He wanted a piece of toast before I took him to a b-day party tonight and I told him he can’t have it. I offered him some non-carb food and he told me he wanted to die and that he hates Diabetes and its not fair. Then, I take him to the b-day party and I had to tell him that he could’t have the teddy graham cookies and pretzels that all of the kids were noshing on before the pizza arrived. He was so upset and crying. The doctor said we can only give him 1 insulin shot every 3 hours so I had to wait for dinner time to give him his insulin. It’s hard because he just wants to be like all of the other kids. He’s been so fixated on food. Does it get any easier?
Very sorry your son was diagnosed, and yes it does get easier. The extreme hunger you mention is basically their body trying to make up for being starved of energy just before diagnosis. So he will be hungry all the time but that won’t last. I agree with the pump and cgms. At this age, they will accept both and once they initially get used to it, they like using the pump. Anything that cuts down on the number of shots and finger sticks and it just adds so much flexibility. The websites mentioned and three books “Type 1 Diabetes” by Ragnar Hanash, “Think Like a Pancreas” by Gary Scheiner and “Pumping Insulin” by John Walsh. Gary Scheiner also trouble shoots is a CDE, and helps manage your child’s blood sugars, basal testing, pump starts, diabetes and exercise at integrateddiabetes.com. You can contact him once, or hire him for three, six months or a year. We had a great endo part of a large diabetes clinic. Their CDEs changed every six months (they train them). Gary helped us out for about two years after diagnosis. He was great and great at training you. Give yourself time to grieve, to heal. The children handle this better than the parents. You will see how quickly he will adjust and how strong and tough he will become. In a year you will look back and you won’t believe how far you have come. God bless and good luck to your family. P.S. with the pump he can eat more freely. I would have allowed him to have some of the teddy grahams and pretzels and just added it to the shot when you give pizza. That would have worked well because the pretzels and teddies are fast digesting and that slice of pizza takes hours to digest. So he could go low before going high with just pizza and a shot. Also get some books on the glycemic index. You will need to know how quickly and slowly different foods digest because insulin stays in the system from 3 to 5 hours.
Welcome to TuDiabetes. I wont repeat all of the said above. I was diagnosed at age 8 and am now 20, thriving with Diabetes. I can’t stress enough how much respect i have for people taking care of someone with diabetes. It is not the same as it is for me at all. My mom and dad made sure that i never felt like Diabetes was a restriction to me, and i really feel that was key to how i see diabetes today.
I know that birthday party was ugly, especially so early after diagnosis, but in the future i would definitely make sure that your son does not have the feeling that he can’t do something because of diabetes.
so for that to happen, i would get this 3-hour rule to disappear as fast as possible. many doctors make this rule to avoid “stacking”, meaning that you might inject too much insulin in multiple shots. but this is avoidable if you keep track of the insulin you give him and make sure it is not too much. that way your son can eat more freely, especially at parties and also at home. definitely bring this up the next time you see your endocrinologist.
i know this is all new to you and i don’t expect you to know it all already, just letting you know that there are many out there who take multiple shots in 3hrs (including me). take your time with learning about this, it is ok to be messy and horrible in the beginning. soon you will understand more and thus be more confident and flexible in taking care of your son’s diabetes.
i would definitely also look into a pump, it helps immensely, especially with kids.
This REALLY helps! Thank you!
Agree with what Julia61 says, especially her book recommendations (in the order she listed them.) Be sure to get the latest edition of the Hanas book because several editions are available on Amazon. What your endo didn’t tell you is that, while you should NOT give insulin to correct an elevated blood glucose more often than every 3 hours, you CAN give bolus insulin for carbs any time, so your son can eat when he wants. Again, I’d look into getting a Dexcom CGM (not the Medtronic CGM) and a pump soon. While using the Dexcom CGM is easy-peasy, pumping is another huge learning curve. But since you’re already in that curve, I say GO FOR IT. If you want to take it a little slower, just get the Dexcom CGM first. With it, you can decrease the number of daily finger-sticks needed.
Be sure to watch this YouTube video on Dexcom insertion:
Superhero Dexcom CGMS Insertion
(Type in these exact words on the search; again, I’m old and stupid and don’t know how to link when I’m on my iPhone!)
And to cut down on “sticks” the Dexcom can be worn much longer than the recommended 7 days. You just re-start the sensor.