Newly Diagnosed
Was your child recently diagnosed with Type 1 diabetes? The first few days home from the hospital can seem overwhelming. It amazes me that they just let us take our children home and expect us to be able to care for them!
But you can do it and it will get easier with each day as you learn new routines and become more confident in your ability to make decisions, count carbs, and dose insulin. Diabetes will soon become your “new normal.”
The most important lessons I’ve learned?
- First and foremost, let your kid be a kid.
- Give choices where there are choices to be given such as where to get an injection, which finger they would like pricked, or which Band-Aid they would like. But be firm that whether or not to get an injection is not a choice.
- You will rise to the occasion and become an expert on your child’s care.
- Let yourself grieve…but also move ahead.
Our Diagnosis Story Here is where it all began for us. My daughter was a few months shy of four years and exhibited all the classic symptoms of Type 1 diabetes. Read Mother’s Intuition.
Ketone Testing I wish someone had told me that there was an easier way to check ketones than with urine. The blood ketone meter is a very useful tool, especially for middle of the night checks when your child is sick. The blood ketone strips are a bit expensive, so check your insurance coverage. Read more about ketone testing.
Diabetes at School You’ll need to put a 504 plan in place to make sure your child is cared for at school. Read about our 504 plan and some of the key points we included.
Online Communities
- D-Mom and D-Dad Connection
- TuDiabetes
- Children With Diabetes
- Juvenation (JDRF)
- More Online Resources
Caring Bridge
- “CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.”
- Visit the Caring Bridge website.
Bag of Hope Program
- Backpack filled with resources
- Includes Rufus the Bear with Diabetes
- Provided by local JDRF chapters
- Request within 3 months of diagnosis
- More information
- My posts about the Bag of Hope and Rufus the Bear with Diabetes
Quilts for Children with Diabetes Program
- Free comfort quilt
- For children 17 years and younger
- No time restriction
- Quilt is free, but they require $12 for shipping and mailing supplies
- Part of the iPump organization
- More information
Lilly Diabetes and Disney
- Mickey Mouse Clubhouse book featuring Coco, the monkey with diabetes, is available through healthcare providers including pediatric endocrinologists
- Family.com website offers diabetes information and printables
- Read about Coco and the Lilly/Disney partnership
Don’t hesitate to reach out to me by e-mail (leighann at d-mom dot com) for help, questions, or for a sympathetic ear.
The information provided here is for entertainment purposes only and does not constitute medical advice. Please read the disclaimer, disclosure, and privacy policy statements.
{ 15 comments… read them below or add one }
My 5 year old daughter Kenna was diagnosed 3 weeks ago and we are trying to learn as much as we can.
Tanya, I know I’m a little behind, but my five year old son was diagnosed on December 17th. We kinda in the same place if I’m thinking correctly. How are you doing? We should connect and work through this together at the same pace. My email is amyliz4498@yahoo.com. I have a blog where I’m just journaling the day to day and I’m on facebook and twitter too. I’ve started to meet people and the connections are amazing! We should have a cyber chat!
Hi Tanya,
I’m sorry to hear about your daughter. My son, who is 6 now, was diagnosed at 16 months! It’s not an easy road but know that you are not alone! There is a lot of support out there!
Hello,
My daughter was diagnosed a week and a half ago at 18 months. I have finally come to terms with it, we’ve had a few days to let it sink in. She is doing well. I think she is entering her “honeymoon” phase because all of a sudden her numbers are normal at night. We aren’t sure if it’s from her own pancreas or the Lantus. I just can’t stop thinking about what the environmental trigger was. My husband got Type 1 when he was 7, so we know she was genetically predisposed, but I can’t help but feel guilty something I did caused the trigger. She is so young to develop it!!
hi,
my son Nikolai was diagnosed almost 3 weeks ago.i felt guilty at first but now its like he was never without it. he is 18 months old and im so proud of him. he takes the shots like a champ. i am so grateful for the great information provided on this site. thank you
My son was diagnosed right before Christmas and is 11-years-old. Every day he remembers his life before type 1. He left school for the Christmas break a typical boy and went back after the break with a whole new life. It’s been hard on the whole family but we’re getting there. I guess I thought I would feel so much more confident by now – but I worry so much still.
my ten year old daughter was diagnosed Dec 26th, so we are on the same schedule and similar age. It has been really hard for us. I cried and cried for a few weeks. Now it is getting better but we are facing her first illness and that has been very hard too. She has had pretty high BS the last few days and ketones once.
Is your son interested in other kids with type one. My daughter isn’t. She doesn’t want to talk about it at all or hear about other kids with it.
I know what you mean about coming back from break with a whole new life. That is what happened with us too. She has missed a lot of school from feeling fatigued and having trouble getting going in the mornings. It is frustrating and embarrassing that we can’t get her there on time but we are trying so hard…
My son Jack was diagnosed February 19, 2010. He is 23 months old now, and is a constant inspiration to me. He just hands his finger over, and takes his insulin like it has always been this way. I found your site tonight, and found myself crying, out of (what I think is) happiness to find so many people going through the same thing. I found you because I was trying to research the meter that checks for ketones, because we had a 500 reading out of the blue today, and (of course) they always ask if I checked for ketones- sure, I tore apart another diaper trying to get a reading, because I didn’t have cotton balls in his diaper. Anyway, I am sold, we are getting one ASAP.
Anyway, thank you. I appreciate your site.
Hi Kelly,
Just found this site. My daughter Colleen was diagnosed with T1 on February 18, 2009 at age 10 months. I couldn’t help but notice the coincidence in the diagnosis date and they are very close in age. Colleen turned 2 in April and has had diabetes for 16 months. I can totally relate to all you said in your note – especially the cottonballs in the diaper! We now have a blood ketone checker that makes things much easier. I hope things are going okay for your son – I know how tough it is with a toddler. We put Colleen on the Dexcom CGM in March, and although it’s not an insulin pump, it has definitely made things a little easier. Would be happy to share any information I can with you. Take care! Carrie
Hey there, My 4 year old son Jack was diagnosed 17 days ago. It seems like forever ago. We’re doing well, just taking it one meal at a time. Jack seems to do a little better everyday and we’re adjusting and readjusting to find a dosage that works for him. Tonight my biggest fear is my 6 year old daughter being diagnosed. I know it doesn’t help at all to worry, but worry I do. Thanks for this great blog!
Hi everyone. It is great to see a comment on here as I ran across the blog and havne’t been back since. I web search alot but don’t seem to find the same blogs again unless I link through facebook. We are almost at our six month anniversary and I don’t know how we will handle that (celebrate, ignore, somehow acknowledge?).
Annie, it sounds like you are doing good. I am glad to hear that. I have struggled a lot and continue to struggle. I think everyone is different. My daughter does not have any blood siblings (has an adopted sister), but I have thought about what it must be like to wonder if it will happen again. You can go to diabetestrials.net (or google to find diabetes trials) and they have a study for siblings that checks for antibodies that indicate increased risks. They will also check cousins. Once they are checked and if they are negative, they can follow up yearly for rechecks.
I hope your insulin adjustments go well. We contiually have to adjust and have different meal ratios for every meal, but things are leveling out a bit. We are hoping for a pump soon. I hope you have a good doctor. The best to you and your family.
Thanks for the encouragement Barb! The hospital offered that test, but my understanding was that it was for any kind of aut0-immune disease and the onset could begin next week or in 10 years, so we decided against it. If she is going to get it she’s going to get it, and I want to let her live as long as possible w/o the worry. Does that make sense? We’ll definately be looking for symptoms though. I’ll say a prayer for you guys as you work through all your dosing!
One thing I wish a nurse or doctor would have told us about are prep pads with benzocaine. Unfortunately because of the recall, you can’t buy them now, but whenever they’re available again (soon I hope), we’ll be stocking up like crazy! We didn’t know about them until several months after my son’s diagnosis, and they made injections almost painless. We also use them for his site changes with his pump (along with lidocaine cream), and it makes such a difference. It was heartbreaking having to see my son cry and get so upset whenever we did an injection in the beginning. Fortunately he’s tolerated everything pretty well, but I wish we would have known about them!
Stumbled on this site…..can’t thank you enough. Our grandson was diagnosed Jan 1,2012…Happy New Year!! He is going to be 9 in March, and seems to be handling it all pretty well, finger sticks, injections, etc. But sometimes it seems the twinkle has gone from his eyes. That can break an Grandmother’s heart….reading some of your similar stories I finally broke down crying…a good thing I think. Its such an all incompassing thing for him and all the familly. I just want to see him really happy again…..I’m so looking forward to that day. He seems to cheer up four times a day..in between the constant reminder that now he is different. Really, the best way I have learned to cope with it is to imagine that “we” are his beta cells now, and just have to respond to his meals and snacks accordingly. Thanks to a very supportive family and community, we are doing well, and someday, won’t remember when he didn’t have DM! Other’s love and concern have been those rays of sunshine in what can be a dark and scary place. We difinitely need to share and support each other. Any suggestions to help him get “happy again” would be appreciated…..
Hello Debbie!
I know this will sound weird, but I’m glad you were able to read my posts and let it all out by crying. I think we all have to go through the stages of grief and loss with a diagnosis of diabetes in a child.
There is a large community of parents and grandparents of children with diabetes online and I encourage you to reach out when you are ready. (Also, you can meet lots of others by visiting my Facebook page https://www.facebook.com/dmomblog).
You can and will do this!
-Leighann