My toddler was just diagnosed with T1

I have just been through one whirlwind of a week. I am sure many of you can relate. My son Brennen, 2 1/2, was just diagnosed with Type 1 Diabetes 9 days ago. I thought something might be going on and thought he might have diabetes because I noticed him drinking excessivly and he started wetting the bed at nap time and wetting through his pull-up at night time. I think I was just in denial, hoping it was just a phase or something minor going on with him. We finally ended up in the emergency room with him last Thursday night after trying to schedule an appointment with the pediatrician and being told he needed to be seen right away, that this couldn’t wait I didn’t want to rush to the emergency room and expose him to any viruses etc. if I didn’t need to, so I chose to check his blood sugar at home first. (I was a gestational diabetic when I was pregnant with both my boys, so I had the needed testing supplies at home.) It had been almost 4 hours since he had eaten and his sugar was in the upper 500 range. We thought that couldn’t be right so we tested the whole family and he was the only one with this result. So that started the ball rolling so to speak.

We rushed Brennen to the local ER at almost 9:00 at night. I was still in denial, hoping it was something else, the flu, a virus, anything besides what I knew it really was. Once we finally saw a medical professional, it seemed like the first thing they told us, even before checking Brennen out, was, “He is going to be admitted. Probably at Rainbow Babies.” I felt complete and utter disbelief. I wanted to just break down and cry right then and there. I must have instantly turned white as a ghost. But I had to be strong and hold it all in. I didn’t want my little man to be scared or upset. Next they told us that they would have to start an IV to give him some fluids in hopes of bringing his sugar levels down. On the first try, they missed his vein, and it was absolutely heart wrenching to have to hold him still so they could poke him yet again to start it at an alternative site. He kept crying, “Mommy I’m done! I feel better! Let’s go home!” It was awful! Finally, they decided he was going to be admitted at the Cleveland Clinic instead of Rainbow and an ambulance arrived to pick us up for transport at nearly 1:00 in the morning. Only one parent was aloud to ride with him and I was thankful my husband decided that parent would be me. He stopped at home to get a few things and then eventually met us up at the hospital. Once we arrived, it was a frenzy of nurses, residents, doctors, and finally we were left alone to try and sleep. It was very loud; the unit was filled with sounds of babies crying, childrens television shows, and nurses checking their patients. We basically got no sleep at all.

The next day was a rush of meetings. We met with so many nurses, doctors, nutritionists, and educators, that by the end of the day, we didn’t know anyones name or who was who. We had had a one day, crash course in how to manage our son’s disease. Then at dinner time, we were told we could either go home or spend another night. We chose to leave and go home to our 4 year old, Landon, our own house, and mostly, our own shower and beds. Then began the task of doing it all on our own. Brennen quickly got used to checking his sugar. We told him that his finger was going to get a kiss instead of saying it would pinch so he would not be so afraid. This seemed to help. Within a day or two he was actually able to use his meter mostly on his own. He liked to be in control of what was going on. Even at such a young age, it is amazing that if you give them some control, they handle the change in a more positive manner. Still, he did not like getting his insulin shots. Who can blame him? I actually ended up letting him stick me in the arm with an empty syringe to show him that it didn’t hurt so bad. It worked a little, because he puts up less of a fuss about it now than he did in the beginning. I also like to let him pick where he is going to get each shot. Back to the control thing. He seems to be more calm if he can choose. The hardest thing was telling him he couldn’t have certain foods he wanted at certain times. My kids are used to snacking pretty much whenever they want as long as they eat their meals, so this was a huge adjustment for him. It was hard on me too. I hated that he had to cry over food. It took some creativity to get him to try new “free” foods. But now he has learned to like new things and he has more options to choose from. It gives him the freedom to still snack when he wants. He just needs help to choose the right types of foods.

Each day gets a little easier. It is still really hard, but I know soon it will be like second nature. Today was the first day I was actually able to let it out and just cry a little. I have felt all week like I just needed to cry, but every time I was ready, I would be in public or alone with the kids so I held it inside. Then by the time I was alone or in private, I was so emotionaly and physically drained that I just couldn’t get it out. I felt like I was numb. I sort of felt guilty for being upset, because I know that this is so very manageable and it could be so much worse. Brennen isn’t dying. He isn’t ill where he is stuck in the hospital for weeks or months at a time. It took me awhile to realize that I am a parent and he is my child and I have a right and a responsibility to get out my emotions so that I can feel better and better take care of him. I feel so blessed to have a great support team behind me and I look forward to getting to know more moms who have walked in my shoes. I think, what I really needed in order to deal with this was to hear stories of other parents’ experiences, to know that I am not alone. I look forward to hearing other parent’s stories, making new friends, and working to find a cure.

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Hi! I’m sorry that your Son was dxd. It is not an easy disease but most people become comfortable with it after many years of learning, experimenting and Acceptance of it. It involves so much.

I am not the Mom of a Diabetic Child but my Mom and Dad were/are Parents of 3 out of 4 Children who have/had Type 1. It was called Sugar Diabetes when we were dxd. at ages 3 and 4 yrs.

That is Good that you have had time by yourself to cry. It is a necessary release to help you to be able to get things looked after for both of your Boys. I just wanted to drop you a note. Best Wishes and Health to you and Brennen and your Family. :slight_smile:

Welcome to our community! I’m so sorry to hear about Brennen’s diagnosis. I think that it is very healthy to let yourself get these emotions out whenever you can. It is OK to mourn the life that your family had before diabetes came into it. It sounds like you are doing great, but there will be hard days, especially in the early months. BUT your family will adjust to a NEW normal.

After diagnosis (I was 21 when diagnosed), people tried to say a lot of encouraging comments to me like: “at least it’s a manageable disease” or “you are so strong that I know you can handle it”. I felt like replying “well I have to handle it – so I will.” But the best and most helpful response was from a friend who has a dad with type 1. He came up to me and told me: “I heard that you were diagnosed with type 1 – that sucks!” Ah, my thoughts exactly. It is manageable, you CAN do it, but it still “sucks”. Sorry that you have to adjust to this new life, but I hope that this community can help you with ideas, encouragement, and by looking around and seeing the number of adults who are living well with type 1 can be a reminder that Brennen will too!

I’m truly sorry that this happened, there are many wonderful blogs by parents of type I kids online. This is mine, www.ardensday.com. People tell me that it helps, which is why I’m sharing the link with you. You’re post touched me and made me want to reach out. I hope sincerely that I’ve written something that will help you feel more peaceful. Best of luck! Scott

Things can always be worse, but that certainly doesn’t lessen all the emotions you deservedly feel. Feel & express them without guilt. Kristin hit it right by saying it’s mourning. Really is mourning a loss. I was diagnosed T1 at 53 & my mother cried. I cried a lot also. Who wouldn’t? Anger is another normal reaction & as feeling completely overwhelmed.

Cleveland Clinic is wonderful. I have two nephews who have received the best treatment for cystic fibrosis there for many years.

Many parents here to share with & to provide guidance & support. Please don’t be shy in asking anything you need to know.

Big hugs to Brennen & you.

Since I have no kids with DM (at least not yet) I can’t say much about YOUR struggle except for stay strong. Like you said it is manageable (if not exatly always easy).
Something did hit me about your post though. I can remember as a child my brothers and sisters used to always get so upset because I could have candy (when I was low) when they could not. Moral of the story is, that at some point, his lack of being able to eat what he wants when he wants will turn in to something special for him that his sibling/s will not get. Small comfort I know but it diabetes is not ALWAYS a down side.

It sounds like you are exactly in the right place, emotionally and in helping your son. I was diagnosed at age 5, more than 50 years ago. You are right, that control is a big issue for this disease, as in creating ways for your son to participate in what he does. The emotional piece is a work in progress, as you have already seen. As I was taught, knowledge is power. Which means the more you know, the better you will be able to handle this. As you know it is 24/7 365 days a year. It never sleeps. After 50 years of onset, I also can view the positives it has given me, in how it shaped me because it is such an important part of how I have to live, day to day. But I go way ahead,in terms of where you are. This a day at a time journey, and you sound like you are plugged in to take the steps. Let yourself feel everything, and as you said, let the emotion out when you feel it is appropriate.

You summed it up. It’s so hard to get the diagnosis and then have to move forward with a new life – for everyone in the family. The snack thing has been really hard for my girls, but we’re adjusting. My daughter Samantha was diagnosed Nov 29 and I’m just now realizing that I was kind of numb and in shock for most of December and part of January. But in spite of that, we made a lot of progress and just kept rolling. Ask questions, keep writing – it will help.

Hi there, your story sounds like a rewrite of what I put on my page 2 1/2 years ago, except that Eric was only 18 months old at the time. You DEFINITELY aren’t alone, and you’re in the right place! Having a toddler with T1D is difficult and there aren’t a lot of written resources out there to help. I would like to send you some information that I think will help – friend me?

PS I couldn’t read the part about Brennan’s night in the ICU. Even almost 3 years later, I still can’t forget what it was like holding my little boy as they tried to thread a needle into his tiny veins. That night is and hopefully always will be the worst night of my life.

So sorry to hear about the diagnosis. I was dx at 26 and I can’t imagine my son (5 yo) or the new baby (due in 2 months) ever being diagnosed. It’s one of my biggest fears. It’s great you found this site, there are a lot of other moms on here with children with T1. There will be the bad days and tough days, but keep a good attitude and the the good days will far outnumber the bad days.

I was diagnosed at 3, have three teenage girls and so far none have D. It’s so amazing to me how far technology has come since I was little. Good luck to you!

I’m glad you wrote your note and just let it all out. You’ve been through a major shock – go ahead and cry when you need to. And you are doing a fantastic job of working on a good attitude and a good way to help Brennen adjust to his new life. You are definitely not alone – there are a lot of other parents here, and there is a group for Parents of Diabetic Children – join the group, and say what you need to – they will be there to help you!
Looking forward to a healthy, happy life for Brennen and the rest of your family! :slight_smile:

Our thoughts are with you. I remember the D-Day like it was yesterday for all three of us. Myself, My 6(Dx at 18 m) and my 13(Dx 11) It is the worst feeling in the world. Hang in there, it never goes away but it gets more manageable with time. Feel free to chat anytime.
These post may help:
Rowan’s Story
Dareian’s Story
My Story

Type 1 28 yrs-pump
2 Type 1 kids-1 pump, 1-MDI
3 Non-D
One amazing wife to manage us all!
Famous Blogger(I can dream)
http://www.three2treat.com

Type 1 28 yrs-pump
2 Type 1 kids-1 pump, 1-MDI
3 Non-D
One amazing wife to manage us all!
Famous Blogger(I can dream)
http://www.three2treat.com

I’m so sorry that your baby – your entire family – has to go through this, but I’m glad you found TuDiabetes and I hope you will find it very helpful and supportive.

When my grand-nephew was diagnosed with leukemia at the age of 13-months, we thought the world had come to an end. There was sobbing from coast to coast for weeks. You can’t imagine the terror, especially as we’d lost my 47-year-old brother to a hideous form of kidney cancer not two years earlier.

Now, due to the grace of God and the ferocious scientists and medical personnel at St. Jude Children’s Research Hospital, he’s 3-1/2, in full remission – I say that he’s CURED – and if you saw him playing, you’d never know that he was in the fight of his life before he could barely walk.

I won’t belittle what you’re going through – it’s darn hard, I can only imagine – but there are so many new tools at your disposal, so much new research, so many books and articles on the Internet, so many support groups, etc. that I just know you’re going to get through this and that your beautiful child will thrive.

Go ahead a cry – you’ve certainly earned it. But when you get up, dust yourself off and get on with it, know that you’re not alone. Here’s a hug for your whole ((((((family)))))).

I wish I could offer you anything that would help, but there isn’t anything out there. My daughter was dx’s 1 yr and half ago. She was only 18 months old. Although we have come to accept our “new normal” it doesn’t make it easy. I still can get upset and even angry at the disease. The doctors and nurses we have on our team are wonderful, but we still have very little control. It is a hardship. There is no easy way. But you have found on heck of a great source of information here on Tudiabetes. Not only is the information great so is the friendship and the empathy that you will find here.

Good Luck!
Ellen

I am so sorry about what has happened. I am glad that you caught it in time. My thoughts and prayers are with you and your family!

Many kind people have given their kind words to you. I want to offer my lifetime experience with diabetes to you. i was diagnosed Dec of 1962. i am 52 today and living well with D. You are RIGHT, Brennen isn’t dying. i was stuck in the hosp for weeks at Xmas time and i got over it :). YOU are doing well with everything but just don’t realize it. My parents were and they didnn’t know it either! they didn’t have glucose meters, pumps, a1c… and were able to give me the great foundation for a diabetic life. We are all here for you. Many are lifers like me and many are new like Bennen and his family. Please let me know if i can ever help in any way!!!

Wow are you going through it.

I just want to chime in to say HANG IN THERE! The adjustment is so difficult, but it gets better! If you ever feel like crying to a stranger in cyberspace, please feel free to just vent in an email and send it off. I’ll be here :slight_smile: