Daughter just diagnosed April 29th

My 16 year old daughter was just diagnosed with Type 1 April 29. My wife and I are in shock and trying to stay strong. We were educated on insulin and carb counting while in hospital. Honestly I just want to know does it get better for my daughter? Will things start looking up as soon as he figure out the new routine? Thank you

3 Likes

Hi @clarkfamily2 and welcome to the forum, and the group no one wants to belong to. I have been a member of the group for 60 years, and was diagnosed at age 3. It’s a shock to get the diagnosis and there is a steep learning curve, but things will become more and more familiar, and like driving a car things you and she have to think about consciously at first, will become more natural as time goes on.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful.
Your daughter has tools at her disposal that were unheard of when I was diagnosed: plain old home BG meters came out around the time I graduated from college, and now we have continuous glucose monitors so we can keep constant track of our numbers and decide what we need to do. I think they are the best technology we have - even slightly edging out pumps - and I would encourage you - her - to get one
As far as administering insulin there are pumps as well as injections. Pumps are great but people can do just fine on shots, and they typically have a 4 year commitment so I would suggest waiting until you have some learnings under your belt and have adjusted before considering one - it’s not something you want or even need to rush into. And some people love technology, while others don’t want to be attached nearly 24/7, and it may take some time for her to decide if she would be comfortable with using ones.
There are summer camps for kids with Type1. Your daughter might say “But I’m 16!!!” - but some go to age 17 or even have sessions for families. Find a Camp | ADA

Wishing you and your family all the best.

1 Like

@clarkfamily2 Welcome Corneilius to the JDRF TypeOneNation Community Forum! Ahh, age 16, my 16th birthday is now celebrated as my diabetes awakening day - that event happened 68 years ago. And believe it or not I’m still learning bits and pieces.

Your daughter is at an age where she is, or will soon be, her principal caregiver, or “Doctor Me” but will need lots of support from close family as well as a good Diabetologist who will give guidance and respond to her concerns.
This Forum is a good place for your daughter to see that she isn’t alone in her diabetes journey, but be aware that very few of the Members posting here are medical professionals; like me, we offer tips and suggestions about what we experienced and learned in our individual journey.

For your part, I suggest that you and your wife offer her encouragement and occasionally remind her that diabetes will not keep her from leading a full, actice, and productive life. She is not “a diabetic”, but rather a person living with diabetes who is learning to be a leader along with the “extra” task if effective diabetes management. Let her accept the challenge of living her life as she sees fit and make diabetes allow her to do so.

There are several active teen members on this sight; suggest that she search for them. JDRF Chapters off a source of support for social, learning; I attend one monthly in Manatee/Sarasota area. The jdrf.org sute has links for all Chapters.

Hi @clarkfamily2 welcome. It’s a tiny bit cliche but I’ll say it: Diabetes has not stopped me from doing anything I wanted to do. I’ve had it 40+ years and it’s like background noise for me now, however I did learn and continue to learn how to use insulin which is a lifelong journey. No, this new deal does not have a graduation, it requires stamina and a mindset. It can be tiring at times. It is better to take things one day at a time in my opinion. I was 12 when I was diagnosed and the doctor gave me a life expectancy of 30 years. Now I own a home, I travel the world solving technical problems, and I have a family and a son of my own. Your daughter will not be stopped by this. :shamrock::peace_symbol:

1 Like

@clarkfamily2 Welcome to the forum, though I’m sure, like most of us, you’d rather be elsewhere. You’ve gotten very good comments from others already. Your shock will fade and the efforts you and your daughter make to control her BG will become a norm, but will continue for the foreseeable future.

There’s much you and your daughter need to learn: carbs, glucagon, insulin types, syringes/pens, injections, CGMs, and pumps. Choices abound these days, as do opinions on what works best. First, based on your daughter’s age, she needs to be involved WITH you, so talk with her and get her involved with your guidance. Second, my recommendations include: 1) learn from her docs, those here, other fora, BUT do your own research, choose what to believe, and be your/her own advocates; 2) your doctor will guide/direct you initially, but you/your daughter will see them 15-20 minutes at a time while you live with the results 24/7/365, so you/she need to become the ultimate decision authority; 3) all of this said, T1 is a marathon, not a sprint, so don’t panic. Your/your daughter’s education will take time, but you/she set the pace. I recommend you first educate yourself on her insurance coverage of insulin and glucagon, then CGMs, then pumps. After you have the essentials of insulin/glucagon, investigate Continuous Glucose Monitors (they beat the heck out of finger pokes). By then you’ll have adjusted a great deal, have trusted sources of information, and be well on your way to normalizing.

Don’t hesitate to ask any questions you or she have, but remember, we are not doctors, we offer only anecdotal comments to help educate you and your daughter on perspectives and issues we’ve experienced.

Hi there,
I’m 17 years old, diagnosed a few days after my 13th birthday. To answer your question, Yes! The first year after diagnosis is whiplash. Things will get better for your family as you figure out a “new normal” and learn to navigate the ups & downs of T1D.
Like many others have already said, it’s totally possible to do almost everything with diabetes as long as your daughter keeps an eye on her blood sugars.
With diabetes I’ve done all the normal teenage girl things- stay-up-til-dawn-eating pizza-and-chatting sleepovers, birthday parties, shopping, homecoming dance, sports, etc. I’ve also lived on a sailboat in the Mediterranean with my family for a year and this summer I’m going to camp with a group of friends.

I definitely recommend getting a CGM- it’s an awesome tool and eliminates the need to do pesky finger pokes all the time.
As others have suggested, you should check out organizations like Children with Diabetes, JDRF chapters, and diabetes summer camps in your area. Loneliness is a hard part of living with a chronic condition because often times you feel like you’re the only one who has to deal with this stuff. This goes for d-parents and kids :slight_smile:
As much as you may know about diabetes and care about your daughter, there’s nothing that compares to hanging out with other diabetics who “get it”.

3 Likes

For anyone newly diagnosed - including family - I like to recommend the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. I read it for the first time about 3 years ago, and after nearly 60 years with diabetes I learned some new things!
It was not only educational but a fun read (IMHO😊) and I think you will find it’s helpful supplement to your learning.

3 Likes

@clarkfamily2 , at age 16, there is the issue of school for most that age. If you are in the USA or many UK Commonwealth Nations, there are legal protections and requests which must be made so you, the school, and the MD are on the same page. In the USA, the protection is a §504-PLAN.

There is a powerful group of parents, school staff member, ADA & JDRF folks in the 504-Diabetes group at FACEBOOK. Check it out.

Good point- 504 plans are very important! Mine allows for me to have access to my phone at all times, bring food/drink into class, extra bathroom breaks and breaks from class to take a walk/visit the nurse if I’m high, and for extensions on tests or homework if I’ve been unable to complete things on time due to unruly blood sugars.
Also @clarkfamily2 if your daughter is planning to take any college board (AP/SAT/PSAT/ACT) or IB tests you need to get your accommodations cleared ASAP through their system separately. Your school can help with this or you can contant the organization’s disability services. It’s best to do this several months in advance…. the bureaucracy is fantastically slow.
In my experience teachers have always been very accommodating and helpful when it comes to diabetes. It really helps if you’re honest and don’t use diabetes as an excuse to not do things for their class.
My classmates barely notice that I have T1D, and most have no idea. Most teens are so focused on themselves that they don’t notice someone else’s “obvious” Cookie Monster like behavior. More often than not they’re surprised if they find out I’ve got T1D because “you look/act normal!” Well yeah, I’m pretty normal if you forget my lazy panc!

1 Like

hi!! i’m also 16 and i was diagnosed on june 19th last year. i can’t say that it necessarily gets better, but i have learned so many things that has helped me and my health! if your daughter ever needs somebody to talk to, i would love to talk!!

2 Likes

I just want to add that the 504 plan is strongly recommended by me. Unfortunately for my son, it was a constant battle with his school because, teachers didn’t know what he was doing when he would get his pump out to bolus, & some forbid him to use it. They didn’t like that he was allowed to have snacks in class, or that he might have to check his blood sugar. This was mostly substitutes which were not given this information that he is a diabetic!!

1 Like

I was diagnosed almost four years ago at age 33. Total shock. Your comment about “as soon as she figures out a new routine” is somewhat worrying to me and very familiar to my own outlook after diagnosis. Sadly, a routine never happened, and I could never just “figure things out” for a time and then “go on autopilot by following a routine” from there. It was a major source of stress for me and a huge wake up call about just how hard it is to manage T1D every single day. I’m sorry to be blunt about it, but I just remember how rosy my expectations were about my deterimnation to just “figure out a routine”, and how my dashed expectations became. So I empathize and wouldn’t want you to have unrealistic expectations. The reality is, T1D takes constant management everyday, it is unpredictable to varying degrees over the course of days/weeks/months/years, and it can be hard to know exactly what to do day to day if/when things don’t go as expected, even for me, who has kept diligent records of carbs and glucose levels and insulin amounts and exercise since day one. It’s a tough, challenging disease, there is no question.

That being said, it has indeed gotten much less stressful for me over time. I was super stressed for the first year and very negative and depressed. Now though, while it doesn’t feel like “a routine” or even all that normal, I am at least much more used to it and much less stressed out, b/c I’ve had all this experience now dealing with whatever comes my way, and I have a lot more confidence in how I can deal with things, and can avoid especially lows now better than I used to. But it’s taken a lot of close observation and record-keeping, and still, it continues to take thought and consideration and effort throughout each day, with a fair amount of unexpected glucose readings as a general rule.

But I still count myself lucky. I can exercise. I can do what I want in life. I eat healthy but I eat what I want and don’t let diabetes have a huge impact on food choices, I just do what I have to do with insulin to eat the way I want. The world is filled with horrible diseases and life circumstances and pain and suffering, so even having this disease (and another one–Ehlers-Danlos), I feel like one of the luckier people in life. It’s hard, but it’s doable if you put in the effort. It’s helpful for the person with T1D to be fairly vigilant of how one’s body feels, b/c that can help manage things. Especially what it feels like to go low, to have steep and fast drops (or even rises) in glucose, to feel maybe on the edge of going low, even to feel high, which is harder but does have distinct uncomfortable sensations like tiredness, shortness of breath, pressure in the fingers and gums, etc. If a CGM works, that would be great (it doesn’t for me–too inaccurate. Others love them, which is great).

Anyway, my best advice based on your post is to set yourself and your daughter and family up for meeting and dealing with a huge life change, one that will always take effort on your daughter’s part. But one that is indeed manageable and doesn’t need to stop her from doing whatever it is she had set her mind to do prior to the diagnosis. I wish you all well!! You got this. -Becky

How has it been after 2 months?