Hi. I am a father of 2 young girls, ages 4 and 2. Our 2 year old, Zoey, was diagnosed with Type 1 Diabetes on 12/23/16 and our world has completely shattered. I am reaching out to other parents with young children who have been diagnosed with this terrible disease. I am heartbroken and need some help getting through this difficult time. I feel so badly for Zoey, I don’t know what to do. We are located in the South Jersey (Burlington County) area…I would love to hear from parents, near or far, that can offer any advice, help or support. Thank you so much.
I am new to this forum and I completely understand where you are coming from. Our 9 year old daughter was diagnosed on 12/10/16 and I felt the exact same way. We went to the ED because she was in DKA and were in the hospital for 5 days. It absolutely crushed me to think that this will be her daily life forever. This diagnosis came out of nowhere and rocked me to my core. Never in a million years would I have thought my daughter would become a diabetic! She also has antibodies against her thyroid so they will monitor her frequently for hypothyroidism. I have felt grief, loss, devastation, you name it! We are trying to adjust to this new way of life but it is hard! We are 20 days into this and I have to say I think it is getting somewhat better. I haven’t had a private crying melt down for several days now so I figure that’s an improvement! It breaks my heart every time she gets upset about her new way of life or when she worries that she is now too different from her classmates but we are taking each day one at a time and working through it. I am anxious every time she goes to bed and get nervous when she has a low but we are getting better. Everyone tells us that someday this will be old hat and we will just go about our day like it is nothing new but until then I will worry, seek support and try to maintain some sense of normalcy. Prayers to you and your family. Allow yourselves time to grieve, allow yourselves time to fall apart and be there to pick each other up. Take care!
Hi there. While I do not have any children with type 1, I myself have type 1 & was diagnosed at 22 (now 31). I wanted to give you this website where you can possibly get your other child test for T1D. Its https://www.diabetestrialnet.org/index.htm I took my daughter to the diabetes institute in Denver on her first birthday to get her tested. They test to see if she has the markers for developing it. Its a small simple blood test, results in 4-6 weeks. Its 100% free because it is part of an ongoing study they do & its done across the country. If she doesn’t present any markers, then you can come back every year until 18 to test for it. I think they said usually by then markers would be present. Thought it might help bring peace of mind for your other child.
In regards to the diagnosis, I can partially imagine what you are going through since I went through the grieving process myself. To be honest & frank, in retrospect it’s not the worst diagnosis in the world. She will live a full & healthy life. Just keep juice packs on you at all times for emergencies; I keep them in my car, my husbands car, & my purse & diaper bag. Also, it doesn’t mean she can’t have sugar, it just means moderation & carbs are not always the enemy; slow digesting ones like beans/legumes do better with blood sugar control & keep you fuller, longer. Don’t stress about the highs as well, perfection is not always achievable with this diagnosis; just correct with insulin & keep going! I don’t know when they can start on an insulin pump but it would be something to look into because she can have better control with that. I took a insulin pump class with a 8-9 year old when I was first diagnosed & he had an Omnipod (it’s wireless so it allows a bit more freedom for children).
Hi there. I am so sorry for what you are going through. My two year old son was diagnosed last January at only 15 months old. It was completely earth-shattering for us as well. I hope to provide you hope and encouragement by letting you know that as hard as the transition was, we are now almost a year in to our T1D diagnosis and things DO get better! A few pieces of encouragement I hope will help, but please feel free to reach out with any questions. I’m still fairly new to this thing as well, but would be happy to give you any tips that I now know. I am also a mentor with our local JDRF Chapter in Central Florida.
- It will take a few months to get into a good routine, so don’t be too hard on yourself. Your daughter’s blood sugar levels will be all over the place until you tweak her insulin dosing to the perfect levels for her. It will take lots of trial and error.
- If you have access via insurance to get her on a CGM (Continuous Glucose Monitor), I would HIGHLY recommend one. We use the Dexcom G5 for our son, and it is amazing. If you aren’t familiar, it’s a small sensor that your daughter would wear continuously that tracks her blood sugar levels and syncs right to your phone. Alarms go off when she’s going high or low, so that you aren’t having to finger prick as many times a day. We chose to get this about a month after my son’s diagnosis and it was our best decision yet. It’s nearly impossible to sleep comfortably at night wondering if your little one is ok; this has allowed me to be able to do that again.
- We made the decision this summer to start our son on an insulin pump once we had him in a good routine with the injections and his blood sugar levels were in range. I was very leery to try at first because of how active a two year old is, but we’ve been pretty successful with the Omnipod tubeless pump. It’s waterproof; no cords or wires! Our son’s blood sugar is even better now; as it can dose insulin much smaller than a syringe.
- You WILL get to a place when you don’t feel like this diagnosis is running your life. Don’t get me wrong, it’s a LOT of work, and it changes so much, but it will all become second nature for you.
Hope these things help.
Thank you all so much for the responses. They have helped a lot and show me that there is hope for my daughter to live a life and close to normal life.
My little girl was diagnosed on 10/1/14, just 10 days before our 3rd baby was born. I remember feeling what you feel now…we were devastated. I’ll be honest, some days, we still are. Early on it was very hard to get a routine and I can’t say it gets easier only that it gets better. Here are the three things I would say are most important:
Education - I learn something new about T1D literally every time we go to the Dr. or a camp or a website. There are lots of free classes put out there by Children’s and Scotish Rite. You got a lot of information in a very short amount of time…the classes help round it out…also, make sure your support system takes classes, your parent’s, siblings, children…i mean everyone needs to take some sort of class for understanding.
Community…Call your chapter JDRF and ask them what community stuff they have. Here’s the South Jersey Link http://www.jdrf.org/events/?location=Cherry%20Hill%2C%20NJ. Along with this, try and find a good family camp to go to. Its helpful for everyone to do this if/when they can.
A lot of people said things like “Did she get a lot of sugar” and “she seems so healthy” and the list of unintentional condescending remarks goes on. THIS IS NOT YOUR FAULT!!! I’m shouting because sometimes you won’t hear it beyond all of the negativity in the early days.On the side of the box our educator gave us with all the pamphlets in it, it said this. I saw it about a month and a half after our diagnosis (I say “our” because diabetes if a family diagnosis).
"Pause. Take a deep breath. And remember.
- You couldn’t have prevented what’s happening with your child, so try not to beat yourself up.
- Although you may feel overwhelmed, other people have done this, and you can too.
- Your kid can still be a kid. Your family can still be a family."
I cry every time I read it still. It’s true…I promise you it’s true.
Okay, I hope that was helpful and not depressing. If you ever need to talk or have any questions, I’d be happy to help any way I can. Feeling for you and your family.
Wow all I can say is I can’t top off what everyon else wrote! My son was diagnosed 5 years ago I promise it will get better but as parents ( and me as a mom) our job is to worry lol and I don’t think I ever will stop worrying … my son is at the stage where he wants independence at age 11 But he’s still a child and does forget to do things so they’re still on my head … in any case u will get thru the hard times… the crying will stop … the family fun times will continue … and u will look back at this dark time and u will be so proud how u sailed right thru it. Few pointers :
I kept a diary in the first few months after diagnoses. I love to read it now and then because then I Rem how hard And raw it was.
Another thing i want to share is travel. I travel a lot with my family and thru mistakes I learnt a lot . Always take double amount of supplies u will think u will need . Pack some in ur carry on and some in checked in luggage . Insulin and his case with extra supplies always goes in the carry on . Inside the case I keep : an extra BG meter, extra strips , Ketone meter with strips , fast acting candy. Alcohol swabs , site changes for pump. Extra pieces for pump incAse something gets lost or broken. Batteries. Glucagon. Lancets, Syringes (even tho he’s on a pump) .thats basically what i can think of now . I also purchased the frio pack for insulin when traveling. It’s really great. Hope this somewhat helped U and others that read this . Best of luck!
@bdmd41-first and foremost, you aren’t alone brother! I’m new here and new to the situation. My 3yr old daughter was diagnosed just over a week ago. My 19 month old son is set to be tested next month. I personally hate needles. I don’t do well with the sight of blood. But she’s my Lil princess and I have to do what I have to do to in order to keep her healthy.
We were actually headed on family vacation when we rushed her to Children’s of AL in Birmingham.
The mixture of emotions, questions, info overload, etc.are overwhelming. I can say with certainty that if you feel lost, look around. You won’t be alone.
hi @Philip, sorry to hear about your daughter’s diagnosis, but it’s good to hear you’ll do what you have to do. being a rock and being there for your daughter is what she needs now. regarding your son, there is no real way to screen for type 1. any test the hospital will do is neither confirmation that he’ll ever get or ever not get type 1. not to make you feel worse, it’s just what it is.
you will soon be an expert in type 1. any help or support you need anytime, and we are here. a CDE and a pediatric endo will be your best bet for medical questions though.
since you will have a finger stick meter, if you do notice your son has constant thirst, frequent urination, and is losing weight, that finger stick meter is your first best bet, just be aware that in kids a random high blood sugar can be normal.
hope you are doing ok.
Hi – I am new to the group. I can’t help but cry after reading the post and all of the comments. It brought back memories when I went through the same thing back in January with my 3 year old son. We rushed him to the ER because he looked very ill and it just was not normal. Sure enough, his BG was high. What hurt the most is what the doctor had told my husband and I. He said that he is glad that we brought him in when we did otherwise he wouldn’t be with us anymore. I was devastated after hearing that and still brings me to tears when I am reminded of it, a reminder that I almost lost my son to this disease. Anyhow, it has been over 5 months for us and he/us are doing better. We got adjusted to the new norm as they call it. I am sure you will to. My son has a CGM and he is on a pump as well. There are a lot of great resource such as this group that we can all utilize if need be. Hang in there. I hope you and your daughters are doing okay.