My teenage daughter was recently diagnosed with type one. It has been a scary roller coaster ride the past couple of weeks. We are learning alot and still have so very much to learn. I’m trying to reach out and be as pro active as possible to help her through this.
Hi, Eric. Welcome to TuDiabetes. I’m sorry about your daughter’s diagnosis. My son, Caleb, was diagnosed with type 1 when he was three. He’s now fourteen. It’s been over ten years, but I still remember how overwhelmed I was. We had entered a very foreign new world.
I found great comfort in connecting with people who understood and I had difficulty finding them in real life. Online communities like this one were and still are invaluable to me.
Please ask any questions or express any concerns you have. As you said there is so much to learn and we’re all here to help.
Sorry you and your daughter have to join the club that no one wants to join. But you’ve come to the right place. There are lots of helpful people here who will assist you in your journey. Fifty plus years ago, I was the teenager who had just been diagnosed. There were almost no tools and medications back then, beyond basic insulin. And there was very limited information on controlling diabetes.
Today, it’s a different story. There is so much information that it can seem very intimidating. And It can seem like there is an urgency to get everything right. Working with your daughter’s doctor to get a basic treatment plan in place is critical. But take your time in getting the fine-tuning right. Being a teenager was never easy and diabetes certainly complicates matters. I think it would be easy to push too hard and end up with worse control.
You will find many knowledgeable people here and references to good books that can help. It’s important to be concerned, but hopefully these resources will make your journey less scary.
First, let me welcome you to this community. Interacting with others who share your challenge is great way to cope with your new situation. Fear is an understandable emotion in this context. But don’t let it paralyze you! Learn all you can about type 1 diabetes. Knowledge is power and will help re-calibrate the fear you feel. The fear will never go away but you can shrink it to a more livable size.
You will need to learn how to navigate the delicate balance of providing good support for your daughter without overstepping your role. It is, after all, her diabetes, not yours. Having said that, her diabetes fundamentally impacts your family’s well-being, so you do and should play an important role. This can be tricky and its not natural for you to instinctively know what to do. There is lots of experience here with parents dealing with teenage T1Ds. They can be a great resource for you.
Good luck and I hope you come back with all kinds of questions. We are here to help!
Thank you so much for the support and out reach. It’s been tough especially the not knowing or being quite sure we are doing the right things. But we are getting by she is a tough cookie. It’s good to know we have a place to ask questions from people who have been there.
I was diagnosed at age 5, and it has been over 50 years. A lot has changed, and outlook for those diagnosed today are much much better .
Yet, I think I have a pretty normal life, job, home, family etc. Just have to make accommodations where needed.
I enjoy reading posts from parents like Lorraine, as it gives hope and understanding of how different it is for kids today with all the advancements and tools available today that did not exist for me.
One of the best books I read was Think like a pancreas. Once I understood how insulin works in person without diabetes, it made a lot more sense of what I needed to do to mimic the same.
Eric, My 14 year old son was diagnosed about 1.5 years ago. I am sorry for you. The learning curve is steep, but there are lots of people who have walked in your shoes. Hang in there and know you can get support from others who are, or who have been in your shoes. My first and only bit of advice, talk to your medical team and get a Dexcom. It is the one item that helps us the most, and gives us the most piece of mind. It will accelerate your learning and understanding of how this disease affects your daughter, and allow you to treat her without her having to communicate or bug her.
You may wish to look into the Bernstein approach, though it is quite different to what many parents are initially taught. there is a typeonegrit facebook support group, also, if you are interested.
Yes I am very interested in the dexcom but was told we have to wait until at least our 1 month check up with the team. That isn’t untill September and then have to be approved by insurance. It’s definitely something I hope we can get.
The Dexcom is nice. Awesome technology.
With that being said, it is very easy to be overwhelmed by the amount of data you get from the CGM and feel like you are completely out of control.
Get a handle on things. Start with the most important aspects. You have time. Fine tune as you go. Don’t try to do everything at once.
Been there with you. Our son was diagnosed at 15 two and half years ago. It is a roller coaster. At first she will do pretty good because this is new. Then she will get tired of not being like everyone else and feeling like diabetes is controlling her life (expect anger and not taking care of her diabetes). So here are some parent tips to make it through the new diagnosis teenage years:
- You don’t know what it is like, so don’t pretend. Be sympathetic, listen, and support. Now that she has it - so does the whole family. Therefore, if you are a Pepsi drinking family - you should all be a diet Pepsi drinking family . . . SUPPORT her, don’t make her feel like she is on an island.
- Go see a psychologist (the whole family). May only need to go a few times, but lets her speak to someone who is NOT mom or dad about what she is going through.
- Reinforce that diabetes doesn’t have control of her, she has control of her diabetes. There are many inspiring stories of kids/adults that do everything that non type 1 kids/adults do. My son for example went on to get a college soccer scholarship and compete at a high level in soccer nationally. He found his inspiration from a U.S. Mens Soccer player who currently has type 1.
- Expect slips, disappointments, and mistakes. Every person is different and she will eventually figure out the hard way what happens when you don’t keep you diabetes in check. (feeling awful or sick, missing fun events because she doesn’t feel well, not getting a good night rest because going to the bathroom all the time, or a nagging head ache.) These are opportunities for her to learn the consequences.
- Finally . . . .blood sugar is not all about the food. Her blood sugar will rise and drop based on her emotions or feelings. Final exams and tests can create anxiety and blood sugar to rise or fall on it’s own. Hot and cold weather can also create the same issues.
On a side note: talk about drugs and alcohol with your daughter. The day will come that it will come into the picture. . . if only once. She will not react like everyone else so have that honest conversation. Make sure her best friends have your cell phone number in their phone in case there is an emergency. Blood sugar can drop quickly. Make sure the friends know that what may look like passing out from drinking too much could really be dangerously low blood sugar.
Scorona’s list is excellent. I was 12 when diagnosed, and I agree with everything posted so far. Being female, I might add that her other hormones also will affect blood sugars. (For years I went low every month on the first day of my period. ) She will learn to recognize the patterns of her life and to adjust accordingly. A continuous glucose monitor will make life much easier. And if she wants to be discrete about having an insulin pump, I suggest you look into the OmniPod. I use the OmniPod, I love it, it keeps me in control, and most of the time people never even know I have a pump since it is tubeless. We females, when wearing certain styles, also do not always have a belt on which to hang a pump, so carrying the PDM in my purse and having the Pod out of sight and under my clothes works well. I am too old to be vain about my appearance, but I do remember how important that can be to a 15 year old girl. I was there at one time myself. Give her a hug for all of us, and tell her she has lots of friends who are willing to listen.
Thank you so much for the input. Yesterday was the first day of school and she came home pretty blue she just wishes this wasn’t happening. It is hard to see her so sad and not being able to help. I am definitely looking in to getting her a therapist.
I was diagnosed one year ago at age 55 and although not a teenager, found it quite shocking. As shocking as it was, I knew from prior experience with auto-immune diseases that with the right effort and attitude, I could more or less live a normal life. I knew nothing about diabetes. I visited a diabetes counselor and a dietician- both covered by insurance, and both very helpful. I used the materials they provided to start tracking my carb intake. I use the Track3 app religiously now to log the carbs. I could then easily forward the data logs to Dexcom to get my G5 continuous glucose monitor (CGM) approved. My insurer initially declined to cover my Dexcom device but I asked my doctor to intervene and got it (2+ months after diagnosis). The device changed everything. From testing my blood sugar 6-8 times a day with finger sticks, i now do it twice a day. In addition to a receiver from Dexcom, I use my iPhone to track my blood sugar readings from the CGM and on top of that, decided to splurge on an Apple Watch, so now I can discreetly check my blood sugar at work and in meetings. Expensive, yes, but these improvements were invaluable. My suggestions include being persistent with medical professionals to see if you can get counseling and a Dexcom CGM; write down questions before each visit; try apps like Track3, FatSecret, MyFitnessPal to log carbs - it may take a while to get used to, but after a few tries, easy; find out about Glucagon - download the app, watch the video, and consider reviewing it with family members, teachers, coaches; also, at the time of Glucagon (emergency injection), ask that the prescription include more than one needle kit (mine didn’t and I had to pay extra for a second one); have her carry glucose tablets at all times; learn the symptoms for low and high blood sugar; log religiously - it may help get devices covered. If you get her a Dexcom or other device, learn the “share” and “follow” apps/options so that you can keep tabs on her blood sugar and be in a better position to support her. You should keep track of forums like this one. New devices are coming into the market and will only get better. She and your family will all learn a lot and get more comfortable, although there will be bumps in the road. Good luck!
I definitely want to get a dexcom but we have to wait untill at least our first monthly visit. Then hope insurance will cover it. Her numbers have been good since we’ve come home, but they warned us of the honeymoon period. We have changed our diet it’s been low carb and healthy stuff so hopefully it’s due to that more than the honeymoon
After a roller coaster day where nothing was working as expected then finally getting a straight and level at 150 right at the end of the day…
My daughter, now 14, was diagnosed two and a half years ago. I hope you and the family are managing - I remember feeling overwhelmed and under prepared to look after her just after diagnosis. A friend - mother of a T1- told me to hang in there, it would get better. I am not sure I believed her at the time, but looking back, she was right in a way. It never gets “better”, but things become easier to deal with, and the more I have learnt about diabetes, the more confident and less helpless I feel. I really hope you find good support. Take care.
if you are interested in low carb, you may like to join the type one grit group on facebook.
Great low carb recipes on www.alldayidreamaboutfood.com
@Eric31 - When our insurance was going to cover it, they were basically good about it but did ask us some questions. They seemed to focus on the lows and were asking a few different times and a few different ways whether the lows can be felt and recognized. Certainly you want to be honest but at the same time you sometimes have to think of particular times that would be relevant. Maybe your insurance would ask this and maybe they wouldn’t.
In our case, I stressed that nightime lows are not felt and not woken up for. I consider that a big deal and one which the Dexcom is extremely helpful for.
Good luck with the insurance. If you do get the Dexcom be aware that the information you get at first can be extremely overwhelming. The graphs and BG showing what happens right after certain meals may be shocking. Take it slow and feel free to ask questions.
I definitely agree with this one. 98% of the food in the house when I was a kid was food that I could eat. Mom and Dad fed the whole family the same as me