Our daughter will be 4 in a week and we are just a month into diagnosis.
hello @MichellCheney,
sorry to hear about your daughters recent diagnosis. The first year can ve very difficult and I hope you have access to support from a certified diabetes educator (CDE) as well as an endocrinologist.
While it may seem overwhelming, you will get the hang of it, if you have any specific questions just put them here or on any of the groups. There is a lot of experience here.
Please check out to see if the JDRF has a local chapter near your location. You can go here http://jdrf.org/ go tot he bottom of the page and enter your zip code.
hope you and your daughter are doing okay.
Joe,
My grandson, 20 mos. old, was diagnosed a month ago. His glucose numbers are all over. Is there ever a point when the swings aren’t quite so erratic?
Feel free to reach out with questions or comments or just to say how you are feeling. My 7 year old daughter was diagnosed 9 months ago. It was pretty much of a shock to us, but in the back of our minds, we prepared for it. My husband has been T1D for 38 years diagnosed at 2. Our pediatrician told us our kids had an 8% chance of getting it. After one week of noticing that our daughter was drinking and going to the bathroom more, we tested her. Actually, we tested her twice because we really wanted the glucometer to be wrong the first time.
Will tell you the truth–it sucks. My daughter has adapted very well–much better than myself. Her dad is a great role model. Her diabetic care manager at school is T1D and a great role model. She is fine with testing herself. We do her shots. We are hoping for a pump in the next 6 months.
You will cry, you will be upset and you will wish for it to go away. You will also see that you are brave and that your daughter is very brave. You will find a strength in you that you may not have known was there.
Take care.
hello @MichellCheney and @Wyattspoppie. Sorry to hear about your loved one’s diagnosis of T1D.
My daughter Beatrix was diagnosed just over a year ago. She was 18 months old at diagnosis, so she’s 2 1/2 years old now.
To answer the question “Is there ever a point when the swings aren’t quite so erratic?”…for short periods of time maybe. In the last year, I have had one entire week where Beatrix had neither crazy highs nor crazy lows within that 7 day period. We were ecstatic…then the next day she got a cold and things went all over the place again.
In the first few months, I remember every number being a panic…after a while, you get a point of reference and don’t get so crazy about every single test result. To me, it’s kind of similar to how you handle your first baby–the first sneeze, sniffle, cough, rash, fever in those first few months are all panics…but by the time you’ve had 3 kids, very little surprises you anymore.
At first I was in a “we can do this” mindset, just following the meal plan, the insulin plan and adjusting as directed. After a few months I got into an angry mindset. I was mad at every ‘bad’ test result. Now, I’m at a place of more acceptance. Who knows how she is going to handle it herself as she ages, that is my biggest concern. I’m sure she will have far more frustrations than me since she is the one with the disease, not just a person trying to help manage it.
Daycare has been very good about following her meal plan and testing as needed, and calling me if there are questions. We are looking at Beatrix starting preschool this year, once she turns 3. We will have to see how that new schedule changes insulin needs. Only time will tell.
One day at a time, one test at a time, one meal at a time. Just keep plugging away. Good luck! You are not alone!
My son was 7 when he was diagnosed. We were having a conversation 3 years after he was diagnosed when he finally told me how scared he had been and how he was sure that he couldn’t do the things he lived anymore. He had felt so sick for so long he thought he would never be able to do the simple things he has enjoyed. I was devastated that it took him three years to tell me but he said it was fine because he knew that was wrong now, it was just how he felt at first. He wants to keep others from feeling that way so he made a website tyoe1ryan.con to put adventures from Type 1’s up to eventually turn into a book to be donated to hospitals to show newly diagnosed people that they can still do whatever they want. Pretty cool if you ask me, but I am biased.
I don’t like saying I’m sorry about a T1D diagnosis. You may feel the same after some time too or you may not. My son was diagnosed four months ago and today is his 11th birthday. In waking him this morning and asking about his 10th year, I see he has mentally healed too. No longer the anger and negative emotions toward what has happened. But as a family we decided to keep this positive and not make his life about those numbers. I’ll admit it was tough - the first week, the second week, the first month, then the first quarter. I kept one quote in mind; “Start by doing what’s necessary; then do what’s possible;and suddenly you are doing the impossible.” -St. Francis Assisi It rings true - do what is necessary, then possible, then with time you will find you are doing what you thought as impossible. T1D has introduced us to some great people who have reached out to us and supported us. It was great having my son meet other T1Ds near his age who are living a normal life.
Reach out within your community and get involved in JDRF, you are not alone.
@Wyattspoppie I just want to respond directly
I was diagnosed in the late 70’s, my glucose numbers are all over, still. maintaining perfect control (69-99 mg/dl) is not possible with the types of insulin and the available blood sugar monitors and meters we have today, but do not despair. kids especially have it tough due to competing growth hormones, and wild changes in their metabolism, but do not despair.
we try to maintain a range, not perfection, but a manageable range, and while it doesn’t get easier with time, it does get more routine. The longer you have it the more you will know about it and the more you will know what your body does…well…most of the time.
our medicine and tools stink, don’t get me wrong, they stink way less than they used to stink in the 80’s, but the still stink, regardless - we are tough and we can do this because we have to. As far from perfect as human recombinant lispro and test strips are, there is nothing stopping your grandson from living and being happy and accomplishing anything he sets his mind to.
I was diagnosed in 1945, when I was 6. After 69 years of type 1, I have very good diabetes health. The life expectancy of type 1 people in the US is now almost as good as for non diabetics. Good care, modern day devices, and the knowledge that is available will see your child have a long, healthy life.
Thank you Joe and you’re right, it stinks. And thank you for the encouragement. We are trying not to despair and keep our spirits positive. It is so hard. But every day we WILL do what we have to. We WILL learn what we have to.
We’re into the 2nd year of my 7yr old’s T1D life. As other’s said, don’t feel alone. The first few months were the most to adjust to for us. My wife and children approach things like a team. So my son’s diagnosis, is just something the rest of us help him with. We encourage him and we reassure him that he’s not alone and that he will never be left to deal with this by himself.
We worked hard to keep his numbers in range. We started with syringes, then moved to the pen style injector, and finally got to the point of using a pump. The pump is amazing. Along the way, we convinced our insurance to cover a CGM before they were pediatric approved. Now the CGM multiplies the effectiveness of the pump (for us). But every day is new, different and can present different challenges.
T1D is hard on my son, and it’s hard on the rest of us. But this is not the hardest thing he’ll have to deal with.
I like the Alessi quote above. I have a one I think of in times of need too:
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.”” -Mary Anne Radmacher.
So, my team continues to try.
Thank you all who have given your insights, your personal stories and your encouragement. We are doing better with it now and know this only the beginning. But thanks to everyone, we know we aren’t alone. Since my last post we joined a type1 support group in our local hospital. I went with my daughter ( son- in- law had to work) and found it helpful to meet with other families dealing with this disease. I recommend it to everyone. Especially parents and newly diagnosed. At that meeting we found a mentoring family that has more experience. It helps to know that there are others you can reach out to near home or thousands of miles away.
Something else that has helped me is not to focus so hard on the disease but more on my grandson. Enjoy the little changes in his personality, marvel at how quickly he has adapted. Our lives have been drastically changed, like all T1Ds and their families. Many have dealt with it for decades and from their triumphs we learn and have hope.
From their failures we learn and can still have hope. Thank you all.
To @MichellCheney I would also add if you haven’t already, allow yourselves to grieve a little about the diagnosis. It is a hard disease to deal with. Above all there is no blame. Sometimes $#*! just happens.
I just wanted to add that our son was diagnosed in april 2015 at age 4. he turned 5 in june. Its “nice” to know there are others out there going through similar situations. We don’t know anyone else with type 1 and feel very isolated.
My daughter Olivia was diagnosed at 9 months old in Feb. It’s been a challenging 6 months but not impossible to manage. Feel free to reach out to anyone on this forum I know we’re all willing to help, I’d also ask your endocrinologist if they can recommend someone to possibly talk with, maybe even another one of their patients that has recently been diagnosed as well. It can be a huge help being able to bounce ideas off another person, listen to their experiences and struggles, and also just have someone to vent to that will understand what you are going through. All the best @T1mama
My son is 11 years old and is 8 1/2 months into this journey with Type1 Diabetes. We have struggled so hard to get him to check his blood glucose 4 times daily. He did so good when he first came home. He was on it like no other. I just don’t know what happened. I want so much for him to be as “normal” as possible. I get him involved with as much as possible with JDRF. I keep him active in sports at school, he still is able to go over to friends houses (if the parent’s are willing). Any suggestions???