Hi everyone. Today im Feeling angry , abd worried all the time… I know it will be rough for awhile but I feel like I can’t breathe most days … my son is doing very well considering everything. I’m wondering if he is ok as he seems. … I seem to be taking it harder than he is at the moment.
in front of him i try to be strong but in private I’m often in tears. I’m trying to read alot to educate myself and now im trying to connect on here with other parents so I can get some desperately needed support . Any suggestions for me Since I’m a newbie?
Hi!
I am the mom of 17 year old daughter. She was diagnosed at the age of 11 and reading your post reminded me of when she was first diagnosed. What you are experiencing is very normal. It is also a little scary in the fact that our children are teenagers. From my daughters first days of diagnosis I have lived my the words, “she is a teenager first and diabetes is 2nd”. We always make diabetes fit into her life. I could go on… Is there anything specific that I could share my experiences with???
Be assured that he IS fine. He just has diabetes now. I was diagnosed at 18 months old (I’m now 31), so I can’t offer much advice on how to get through a new diagnosis since I can’t remember mine. However, I can tell you (and your son) to hang in there and learn as you go along. Diabetes is a lot of information to take in and learn to care for yourself and you don’t have to learn everything in one day. Life will go on, and there is nothing like hands on experience to teach you how to deal with it. I like the comment above that he is a teenager first and a diabetic second. That’s how my parents treated it too (though they were both also T1D and understood that was how it needed to be). It’s a lot right now, but diabetes will eventually just flow into his every day routine. If you have specific questions let us know!
Like others have said, diabetes isn’t the end of the world. But it is the end of the life your son thought he had. It’s different now and it’s normal to go through shock and mourning. As time goes on your son can have denial, anger, and eventually acceptance. Just know that’s all normal. He may also have none of the emotions. People deal with stress in different ways.
You’re both going to be ok. I was diagnosed as a kid but was a rebellious teen who didn’t manage my diabetes well at all. Now I’m middle aged and complication-free with a son of my own. Life goes on, with or without diabetes and your son will learn how to make it fit into his world.
I don’t agree with all of their advice (they recommend keeping a cooler of food to have enough diabetes snacks and calling their doctor at the first sign of any illness, which I think is a bit much) but I like the spirit of the Loy brothers who are both diabetic and co-wrote “Getting a Grip on Diabetes.” Make sure it’s not too juvenile for your son. Amazon.com
Also encourage him to check out youtube videos on type 1. Not the cheesey ones about the “tragedy of this poor diabetic child” but the hilarious ones made by diabetic teens and young adults where they share about what it’s really like.
Look, I have had T1 for 43 years. My mother felt very guilty - I did not. I would suggest mental therapy ASAP for the both of you. If my kids get it that is where I would start. He’s probably dealing with it well and see if he can’t get into a camp.
If i had to choose a disease today it would be T1 - at least there is support and lots of technology. Get involved with your local JDRF ASAP. It is NOT your FAULT - just happens.
I completely understand how you feel, but knowing he can check his BG at any time is GREAT – I could not for MANY years.
Focus on his ease of dealing with trauma and NOT a CURE.
You are not alone!!
Best Scott
Thank you all for your responses… in each one I can take a bit of advise from people that ACTUALLY understand which is so very valuable to me right now. I was told by a well meaning friend the other day that she thought I had "snapped out of it " I told this friend there is no “snapping out” of this -it’s forever . She also likes to minimize everything to try to make me feel better… but it has the opposite affect …
it makes me furious in fact . I had to tell her if she wants to support me to just listen and not to minimize things . I know she and others mean well… I myself didn’t know much about this disease until now and I am in the medical field. Im trying to take care of myself so I can be there for my son. Im so tense … went for a massage and been going to chiropractor for neck and back pain that started recently due to the stress I believe . My son is in the honeymoon stage as they call it … and has been getting his insulin decresed alot since we got home from the hospital. . He’s on a 20:1 ratio and a 50:1 correction with 15 u of Lantus at night … I believe it needs to be adjusted again because he keeps getting low at dinner and bedtime often … we go to his first pediatric endocranologist appt this tues .
My 17 year old son was just diagnosed on January 25, so I am going through many of your same feelings and reactions. Like your son, mine is also doing remarkably well. Yes, he has his moments when “this really sucks”, but overall, he has adjusted much faster than I have. We just had a college visit yesterday, and checking his sugar between workshops, and giving himself an injection before lunch was something I was pretty anxious about. It turned out just fine! I think it gave him the confidence he needed to know that it’s going to be ok when he leaves this fall. Which scares me too, but I know that he’s got this! I have found for us, that really focusing on T1D as more of a lifestyle change, and less of a disease has lifted the tension everyone has been feeling. And for us, talking openly about it has been rewarding. At first, family and friends wanted to talk in hushed tones, like they wanted to protect him from hearing about his own diagnosis. He would just join in the conversation and openly share his thoughts and opinions. Showing our support system that we were strong and working towards his new lifestyle adjustment, made a big difference for us. Hang in there!
@Julie s. Thank you for sharing . We have much in common . I am amazed how confident you sound and am inspired by that. I need to stay positive. We had a bad night last night had to check his sugar at 3 am … he’s been having a few lows so it’s been stressful. … I will be calling dr tomorrow to see about adjusting his insulin -again. We are going on college visits this spring break up in
northern ca / Bay area so it will be our first long outing since this diagnosis. I’m a bit nervous because we will be eating out all the time of course and have to give shots estimate carbs ect. We have eaten out multiple times in our local area here and there so at least we have some experience. He won’t start college until fall of 2016 since he is only a junior … and I am glad for that! I know he is responsible about this stuff and he amazes me every day he has been researching insulin pumps because he hopes his dr will let him get one soon . thank you for sharing your story … i feel not so alone now.
I have been a T1 for 14 years. I was just thinking about when cjohns said your friend tries to minimize it. In my experience people who do that often are clueless in the differences of type 1 and type 2. Better yet, they are usually clueless about diabetes altogether! I have had well meaning friends and family members tell me things like, “you really just need to eat better”. They truly do not know the extent of what us T1’s deal with day in and day out. The amazing thing is that it truly does become a normal part of everyday life after a while. It is amazing what a person can get used to. T1’s learn to be very resilient people. Diabetes has had a positive impact on my life in some ways. I know for a fact I would not put as much effort into having a healthy lifestyle if it was not for T1. Everyone has obstacles that happen throughout their life. I’m thankful that mine is manageable. I was diagnosed in my early 20’s and have gone on to get a teaching degree, get married, and have healthy children. Your son can do anything he sets his mind to. I even obtained my blue belt in Brazilian Jiu Jitsu :). You should Google search famous T1’s. Actors, singers, Olympic athletes…
Anger is okay but in the long run it gets you no where. I’ll be honest, I was hurt and angry. I have a strong family history and lived life like I could avoid it. I even attempted to raise my children as if they were to hopefully avoid. I’ve seen a lot of the effect of diabetes on my older family members and I didn’t want it for me or my children.
BUT - You have to understand that T1 can’t be avoided and it needs to be accepted. It is now a part of your family and will never go away. Once you get past that, get lots of education and get involved. As our first month has gone by we have adjusted fairly well.
The first night back home after my son (10 yrs old) was asleep we went on CafePress and laughed at all the T shirts on the subject. It helped with some of the stress. But just shortly after we came to a decision - this is a part of our son and our family. Some of those shirts were so negative toward diabetes & have no place in our home because it is a negative thought toward a part of our son and thus our family. My husband and I looked at each other and decided we were going to take the high road. No negative thoughts allowed. At that it became easy to begin working to make his new life better. I’m finding ways to incorporate it into our busy lives.
My son loves to hike - so we are looking to do the AT/T1 Challenge (Hike on the Appalachian Trail for JDRF)
My son loves to bike - I’m looking for ways to be ready for that when warm weather hits.
My son loves to cook - We took a health/cooking/food safety class last week. I now have a 10 year old that knows more about carbs, sugars, and fats than most adults! I may even have a future healthy chef.
Also in our first month I read a book not about managing but the history - “The Discovery of Insulin” by Michael Bliss. Reading about the treatment and early (non)survival rates really makes you more thankful to have the battle now and not a mere 100 years ago. My oldest son took it one step further and learned how the current Recombinant DNA is made. That will make you feel different about E.coli and insulin was the first product made this way.
Just as I reached out to my T1D uncle you are on your way by reaching out here. I do understand that the older the child the harder to adjust to any life change. But that is just what it is a life change not a death sentence.
My daughter was diagnosed July 2013 at the age of 15. She’s almost 17 now, and I happy to report that she has adapted to the new normal very well. Like your son, she seemed to just accept it as a fact of life and move on.
Like you, I fell apart. I cried every time I was away from my daughter - for a long time. As a mother, it’s been my job to protect my kids from harm. With T1D, I came up against something I have no control over. It breaks my heart to watch my daughter go through this, knowing that there is no cure. That said, it also makes me so very proud of her. She’s kept her grades up, and stayed in her activities. She decided on day one that this was to be a footnote in her life - not the headline.
My advice is to read, read, read. And it’s OK to cry too. Find friends who will listen. And ask tons of questions.
I have two sons with type one diabetes. My middle son was diagnosed when he was eight. It was a little easier getting adjusted at that age. He is now 21 and using a pump. His teenage years were difficult due to typical teenage behaviors. He is now finally starting to be responsible and take care of himself. My youngest son was just diagnosed last year on his 16th birthday (that was a lousy day). He was pretty upset at first, but seemed to handle it well for the first six months. Now he is angry and probably depressed. He doesn’t care about his blood sugar and taking care of himself. When I remind him to check his blood sugar and give himself insulin he tells me I nag him all the time. His last A1C was 11.5. I almost fell on the floor when they told me. I just keep hoping that he will want to feel better and try to control this instead of it controlling him. I agree that some days are really hard to stay positive and not worry yourself to death. I just keep breathing and get through each day one at a time.
CJJOHNS-I’ve been a diabetic for 32 years. I don’t remember my diagnosis but I maybe I can offer some things I’ve learned. College is not going to be easy. Schedule may be different every day and that is not good for a diabetic. Try to wake up, eat at the same times whenever possible. There are apps now that can help you calculate carbs, as well as diabetic alert dogs, if you need to. Your son will be okay. It’s not easy and diabetes can change from day to day. And a good portion of the time it is not fun, but he can live a full, amazing life if he takes care of himself. (Make sure your son makes a new friend at college, hopefully in the same dorm that knows about his diagnosis and understands what to do. A glass of orange juice is a great sugar booster, when my blood sugar is low.) Your son may need to start carrying snacks with him in his book bag–I always did. A diabetic alert necklace, or bracelet may be helpful.
Paying attention to what your body is saying is going to become second nature to your son and to you.
I’ve traveled quite a bit and never have too many problems. I talk to my doctor and we discuss dosages at every appointment. (If your doctor wants to increase your sons dosage. Increase the amount slowly. For instance, if your son needs to go from 15 units to 18 units. Do not do that in one day. First take 15 1/2 units for 24 hours and see how that goes, then increase to 16 units and see how that goes.)
If you’re still having issues with going low at night, move the lantis to the am. The doctors will say it doesn’t matter what time it is given at but it DOES! As for your son, he is probably trying to fathom this by himself before he expresses all of the new emotions to you. It’s the little things that will help him most.
Hi. I just wanted to say that when my son was diagnosed at age 11 it was a very important part of the process to tell him and have him accept that he did not cause this or give this to himself. That was reinfroced to him by doctors and his diabetes management team. It is also important that you also accept that you did not cause this. You did not miss signs… You are not being punished for something. In the first few months an experienced T1D dad told me that I could handle this and that my son could live well with diabetes. I thought he was so wrong. I am a little further on this journey then you and your son sre… But I can assure you that it gets better, you both gain significantly more confidence and skills and it gets better. It is a journey… It is a trip that takes time but you are not alone in anything you are feeling. Keep posting, the information you learn here is incredible.
My name is Dr. Michael Haller and I am the principal investigator for TrialNet’s newest study aiming to preserve beta cell function in newly diagnosed type 1 patients.
If you or someone you love is:
- Over 12 years old
- Diagnosed within the last 100 days
- Interested in participating in a novel research study
Please feel free to contact me directly at: hallemj@peds.ufl.edu or 352.273.9264
Michael Haller, MD
Pediatric Endocrinology
University of Florida
You can learn more at: http://www.diabetestrialnet.org/ATG-GCSF/index.htm
We have sites located across the U.S.
I know how you are feeling…my daughter was diagnosed jan13 2014. So we have been at it a little over a year. The honeymoon is the worset. I have second guessed everything and cried alot. She is doing well enough to stay out of the hospital but numbers run real high 300 to 400 most days cause she will snack when she is at school and dance class. And most friends have no idea how this effects a parent, their comments can be the worst. I have had friends come to me and say wow she is so fit and not over weight we just can’t believe she’s t1. They have no clue how or why and don’t know what it’s like to know this is for the rest of their lives. My teen hasn’t delt with it yet truly I don’t think. She doesn’t talk about it or even want to learn what is going on with her body. I have talked with her dr and we are seeking outside counseling for the family as a group. I worry she doesn’t realize what this is doing inside her body. as a parent it changes you whole approach of things. I remember the days you are feeling now and still have days where all I wanna do is cry. But I does get better with support and talking to people in these support Groups. Family and friends mean well but it is amazing how many pepole think that your kid has this because all they eat is junk food. My daughter has been a competitive dancer since the age of 3 and has 13 classes a week so she is a very fit and health child. I get so angry when people make these sorta comments. Hang in there and keep talking and expressing how your feeling it does help to talk. There are lots of wonderful people on this group page and without them and there post I think i would have lost my Mind. Best wishes…always willing to listen if you need a friend.
I’m new to this site, newly registered to these groups and so glad to be connected! My daughter age 12 was diagnosed 2 months ago. It’s been a big adjustment period, similar issues to what I’m reading about. I find so much comfort in reading the messages posted here and just want to say thanks to everyone for sharing their experiences and insights, especially those who speak from first person experience in living with T1D. Our biggest struggle so far is mood swings. Not sure it’s related to diabetes, fluctuations in the BG #s during the day, type of insulin or pre-existing anxiety that is made more pronounced due to the big life changes plus a lousy school year. I suppose we’ll figure it out with time. Her daily BG average is probably running too high (closer to 160 or higher at times). She’s active so I tend to give more carbs to protect from the lows but realize now that we need to get into the target more often. I’ve been reading about how important it is to achieve “steady” numbers but that seems challenging given her active lifestyle and all the variables. Thanks again for all the sharing.