I’m just looking for support as I am so lost at times. Me and my youngest son and my family life has been turned upside down. One day I had a healthy 11 year old then one day it all changed. I don’t understand how to make it through. This is the hardest thing I have I have faced in my life. To have a child with an illness. This journey is only beginning and I’m emotional one minute I think I’m okay then I find out I’m not. My son is newly diagnosed we are awaiting the official report but he surly has diabetes. He was rushed to the ER Tuesday 10/12th and admitted into icu. By Gods grace he made it over and released. I have and had to learn how to be a nurses in just 48 hours. My heart is weary and I just pray to not lose myself in this journey. This is truly HARD and I’m tired of people telling me to be strong.I have always been the strongest person I know. Until Oct 12Th I learned my son is the strongest person I know. He comforts me even though he needs comfort. I don’t know when or how long I will feel like this I just pray it get control of the emotions. Cause I’m truly all he truly got. Im just trying to keep my head above the water.
Hi @damilove1 . I just wanted to let you know I was 3 years old when I was diagnosed and that was in 1963, and there are forum members who were diagnosed long before that. We took very different forms of insulin back then, injectiins were the only option) and had no way of testing our glucose until home meters came out in the early 1980s. Now there are different and me effective types of insulins; pumps are available as well as shots; we can keep close track of our numbers using continuous glucose monitors, (CGMs) and our knowledge has expanded greatly so we have a better understanding than we did way back when.
Yes there’s a huge learning curve but you and your son will grow in your understanding of not just diabetes in general but his body specifically: it doesn’t feel like it right now, but you will. If you read some of the discussions under the Parents heading you’ll see you’re in his company and that other parents and kids have gradually become more confident. Sometimes the kid gets there first!
A few suggestions:
Find an endo who specializes in Type1 diabetes (not all do) in children (again, not all do) and that has a diabetes nurse educator (DNE although there a new term now) on staff. The DNE is more available to help guide you through day to day living with diabetes, while the endo guides overall treatment. Your doctor’s office can better explain which to call when.
You’ll want to meet with a nutritionist, who can teach you about counting carbs so you’ll know how to determine his insulin dose.
Look into getting a CGM - you and he can see his numbers at a quick glance and you don’t have to do frequent fingersticks throughout the day and you’ll learn when it’s necessary to take action and what to do.
And last for now, know that having diabetes does not have to keep him from being a healthy, active child - and adult down the road. There are famous people with Type 1 including professional and Olympic athletes, entertainers, a sitting Supreme Court Justice, and the really important people like parents, teachers and maybe even classmates.
Remember to breathe. His pending diagnosis started with a medical emergency but you’re both getting on track now so you’ll have the tools and knowledge you need.
Here are a couple of links you might find interesting and I hope inspirational. There are kids on the forum looking to connect.
Thank you. Please send me the link to the video so me and my son can watch it. I appreciate any help I can get to help with the emotional fight we are both trying to navigate too.
Okay I see the link now. Thank you .
I hope you both find it helpful. I know you’re overwhelmed with a lot of new, technical medical infirmation to absorb, and you want to get it as soon as possible. Remember your doctor’s office is your resource and you’ll be working very closely with them now and in future - but while you’ll have frequent questions now and want to call about everything, in time you’ll learn how to manage things more on your own. I use the word “tweak” frequently on the forum: a person with say a thyroid condition might take the same dosage of their med for a very long time. With insulin our needs may change more frequently due to many factors. I imagine you groaning but stick with me: the key and perhaps even beauty of it is, we watch how our body responds and can adjust accordingly.
One key is record keeping and there are a number of apps available for that: Sugar Mate and MySugr are popular ones I think, but some people prefer using pencil and paper. You’ll find what’s comfortable and works best for you. The apps make it easy to log meals/snacks and exercise, and glucose readings, which your doctor and/or nurse educator can use to identify patterns: rise may signal a need to adjust insulin dose or time, or have a snack at certain times, whatever the case may be. You’ll work very closely with your doctor for a while before you’re ready to make adjustments on your own, but good record keeping will help you get there.
BTW, I imagine you’ll be seeing a nutritionist soon. Go ahead and start keeping a food log - when I first went to one they have me the assignment of keeping one and coming back to review it, so this will give you a head start. They’ll want to know portion sizes so do your best to note them as it will be helpful. The nutritionist will give you helpful tips on gauging sizes so you don’t have to use a measuring tool every time,
Those are couple of thoughts and hopefully helpful tips for you for today. You’re not going to absorb everything instantly but as you read through the forum you’ll pick up learnings that may stick in your mind and come to you when you need them.
hi @damilove1 welcome to Type One Nation. ok I won’t say you’re strong, I won’t say it will be ok, I won’t fill the room with flowers and rainbows. I will tell you I was diagnosed at about the same age as your son.
the first YEAR is HARD. you have to learn a new language, you have to learn to take the place of an otherwise automatic body function, and the tools to do this are far from perfect, nor are they exact. The decisions required to treat T1 are hour by hour, sometimes minute by minute.
managing type 1 can be reduced to its simplest terms, insulin lowers blood sugar, carbohydrates raises blood sugar. that’s it. your job is to hit a tiny target using a finger stick machine or a CGM or both… no easy task. diabetes is painful and generally unpleasant, requires the scientific method, and a logical mind but does not require perfection.
Please buy the book “Think Like a Pancreas”. its on amazon and it is worth a million dollars but costs about 10.
I am not a genius. I do not have magic. I do have 42 years of experience, successfully treating my own type 1, making me more experienced than my own endocrinologist. You will be tested in the coming months, and will truly know what it means when people say “You never know how strong you are until you have to be”…
we can offer advice and stories, about what works and what doesn’t work for us based on our own experience, but we don’t offer medical advice. Diabetes has common things but you have to find out what works for YOU. The top contributors here have almost 500 years of collective experience, so please take advantage. Also, we are a chatty bunch.
I should have replied sooner, and I’m sorry you are struggling. if it is any help at all, I’ve done everything I’ve ever wanted to do (college, career, fun, family) because diabetes was NOT the end of my life. looking backwards, it was more of a “speed bump” than a concrete wall. good luck I hope to hear from you!
Just adding to the chorus. My daughter was diagnosed at 6. She’s 13 now, and this Forum is wonderful. Truly, supremely, stunningly wonderful. So like Dorie said, poke around on the site. Up at the top, click on “Forum,” then “Categories,” then “Newly Diagnosed,” or “Parents,” or “Coping and Support,” or whatever.
And hang in there. The “drinking from a firehouse” stage of trying to absorb the information you need is bad, but it doesn’t last forever. You’ll start to learn how this works. You will.
Post back and let us know how you’re doing. We care.
Good morning. @srozelle 's analogy of drinking from the firehouse is an excellent one. As you read through forum posts (perhaps particularly the Parent category) you may find comparisons of pumps, and recommendations about things to try in various situations. And some of the initial posts have lots of responses. A few suggestions:
- Keep in mind we’re sharing suggestions to consider - not giving medical advice - but as you become more knowledgeable you might find some ideas worth discussing with your endo if you encounter similar situations. Eventually - with time, practice and experience - you’ll be able to do some analysis on your own to determine for yourself if something might work (I’ve been doing this a long time and so sometimes I have an “aha!” moment from what I’ve read).
- Concentrate on the growth the writer or parents experienced in their journey. Here’s a link from another parent wise child was recently diagnosed: 4 Month Post Diagnosis Update - Parents - JDRF TypeOneNation Community Forum
- When your son is ready to go back to school you’ll want/need to have a 504 plan in place. You can do a search on the forum for details, but the plan details what your son needs to manage his diabetes at school and gives him the right to accommodations he might not get otherwise, such as having a snack when he needs to, or taking a break to test his glucose. It also gives the school details about what to do if his blood sugar goes above or before certain numbers. Your endo will work with you to develop the details.
- If you’re considering a pump or CGM - or plan to in the future -
a. you will be assigned to a company rep who will set you up with training and getting the equipment. They have lists of suppliers you can use and know which are good to work, and they will start the insurance verification as well to determine your coverage and what you can expect to pay out of pocket.I mention this to steer you away from the process of navigating that in your own - I’ve tried it myself and ended up with a huge headache, so leave it to them - they and insurance speak the same language so it works out much better.
b. In my experience these typically come from mail order suppliers, not the local pharmacy. I’ve had insurance send me to me local, only to have them tell me I need to get them from a supplier. That might have changed but leave it to your reps to figure out. Your doctor will provide the rep with the info they need to get you started, so you can concentrate on other stuff.
Tara, first welcome to our community. The veterans in this group have so much knowledge that can help you so please don’t be afraid to ask about anything!! I have been mostly lurking in the shadows on here since my daughter, 8 years old, was diagnosed with T1D on 6/16/21. I absolutely understand the feeling of drowning in information and being terrified that you haven’t absorbed everything that you need to know. Our kids are so much stronger than we are aren’t they? If you want to reach out to me at any point just to vent or have an ear to scream in or a shoulder to cry on please don’t hesitate. Also, if you are on Facebook, there is a group “Moms of Type 1 Diabetics”. The group of Moms in there are a wonderful virtual support group. The cheer for your victories, commiserate with you, and offer suggestions when they can.
I am so glad you found this forum! There are quite a few people here who are all willing to help, myself included. I was diagnosed T1D @57 years ago, so I’ve been doing this a long time, but not the longest of the members of this site! So, I would just like to assure you that your son can live a long, healthy life with T1D!
You can always post questions here, or if you like you can email me, or anyone else, by clicking on my name at the top of the email to send a private message. We are here to answer questions and provide support!
T1D 57 years and counting!
Good morning @damilove1 . I hope you and your son are doing okay and making he’s feeling much better. I just wanted to say, determining your son’s insulin needs is going to take some trial and error: your doctor got you started on a plan but it may well change over time. That’s normal - doctors have some guidelines they follow to set a starting point, and from there they will make adjustments based on your son’s response. Don’t feel bad if things don’t go the way you want - it doesn’t mean you’re doing anything wrong, it’s part of the process of figuring out his exact needs. So work closely with your team, let your doctor know how he’s responding, have an action plan in place for treating lows and highs, and call them when you feel it’s necessary.