Hello all. On 12/23/16, out of nowhere, my 2 year old little girl Zoey was diagnosed with Type 1 Diabetes. It has shaken our family to the core and my wife and I are completely devastated. I am lost. I don’t know what to do or how to do it. I feel so badly for my little girl. It just doesn’t seem fair for such a little girl to have to go through all of this and I am heartbroken. I am reaching our for support from other parents with children affected by this terrible disease. We are located in Southern New Jersey (Burlington County) and would love to touch base with parents, near or far, to help get through this horrible time. Thank you.
I have no advice for you but I also just had my two year old daughter diagnosed (12/28). We are going through all the same emotions of shock and working to manage our new reality. I feel for you and your family and would definitely be interested in sharing information.
I am a book reader and the first that has arrived is “kids first, diabetes second” from amazon. I found it helpful to find some tricks and making this all feel like it really can be done.
Alicia (Arlington Va)
Hi - I saw your post and just wanted to let you know it will get easier. My son was diagnosed at a year old 15 years ago. It was devastating, particularly because he was so small. It was very hard in the early years because he couldn’t communicate what was happening with him. My best advice is to find a pediatrician who is used to working with children with T1D who are so young. The very best thing that helped us was going on an insulin pump. They used to wait until children are 3 but I’m not sure if that is still the case. I know a lot has changed. But by using a pump we were able to administer the tiny amounts of insulin he needed much more precisely. I’m very sorry. I won’t lie, this is an overwhelming and exhausting disease. But you will find a new normal and it will become somewhat easier as your daughter grows and she can communicate more. It used to make me really mad when medical staff would tell me in some ways it’s easier emotionally on kids who are diagnosed very early. But in hindsight I can see that may be true. My son hasn’t known anything different and mostly hasn’t rebelled against his condition as some kids do who are older at diagnosis. Adolescence is a very trying time with the hormonal changes. But he takes good care of himself. I’m sending you prayers and blessings. I understand how overwhelming it all is. In the beginning I found other parents of toddlers through our local children’s hospital, and that helped me and our son to have others to bond with that understood what we were going through. I wish you the best of luck. Also, now that CGMs are available (they weren’t when my son was diagnosed), it makes it so much easier to get some peace at night knowing the alarms will wake us up if he is low. The technology to help manage everything continues to improve every year. I’m very grateful for that. Just take it one day at a time.
RichardV
5 minutes ago
I was diagnosed in 1945, when I was 6. There were no meters for blood testing, so I tested my urine for sugar. I used insulin taken from animals for almost 50 years. My only instruction from my doctor back then was to not eat foods sweetened with sugar. The odds were stacked against me, but I have survived, and now I am 77 with 71 years of type 1 diabetes. I do not have any serious diabetes related complications. There are many people in the US, and the rest of the world, who have been type 1 longer than me. The Joslin Diabetes Center in Boston gives medals to people who have lived with type 1 for 50, 75, and 80 years. More than 5000 have received the 50 year medal. I will be eligible for the 75 year medal in the year 2020. I am telling you this because I want you to know that young type 1 diabetic have an excellent chance of living long, healthy lives. With all the knowledge, the devices, and the insulins that are now available, newly diagnosed type 1 diabetics have a life expectancy that is almost as good as it is for non diabetics.
I recommend that you join some of the parents groups on Facebook. There are more than a dozen excellent groups there. “Parents Of Type 1 Diabetics” is one of the best. It has about 9,000 members. The activity, replies, and advice given there is outstanding!!
Good luck to you and your daughter!!
Hello–I am not a parent to a diabetic child, but I personally was diagnosed at 18 months old as the only child of 2 type 1 parents (now 33 years old). I know this can be overwhelming if you have no previous experience with T1D, but I promise it will become 2nd nature after some time. I can testify that the commenters above are correct–it will get easier, she has a very good chance at living a long and healthy life, and I do believe that “never knowing things differently” (due to being diagnosed so young) is probably for the better if it has to happen at all. A few things that might help you in these early days:
-
Please remember that whatever number her blood meter throws at you, it is ONLY a number–a data point that gives you information on how to move forward from that point (whether she needs more insulin, a snack, etc). Please try not to look at these values as a reflection of being good or bad at what you are doing to manage her diabetes (and later, what she’s doing to manage it herself). You will be doing the best you can and a highs and lows are par for the course. No one has perfect control, no matter how long they’ve been at this game. If her numbers were in range all of the time, she wouldn’t be diabetic!
-
Find support in person if you can–check with your local JDRF or even ADA chapter to see if they have get togethers for families. When she is older, look into diabetes summer camps–some of the best times of my childhood were spent at diabetes camp! There’s nothing like knowing someone who can say “me too”–both for her, and for you guys as the parents.
-
Keep in mind that she is a child first and a diabetic second, as one person above stated. Diabetes is something that runs in the background of my life at all times, but it certainly doesn’t define me. Nothing is impossible for diabetics, some stuff just requires a little advanced planning. There are plenty of diabetics who run marathons and things like that–it just takes some extra work to figure out how to manage your blood sugar during such an event. My own personal accomplishment (despite diabetes) was carrying and giving birth to my son, who will be 2 in a few months
(and for the record, so far he is diabetes-free–passing it on is NOT a guarantee)
You will get through this–good luck!
Do you have other children as well? You might consider getting them screened for their risk of T1D through TrialNet. It’s free and a good way to stay informed about the health of your other family members. I believe parents can also be screened for T1D risk as long as they are under 45 yrs. …https://www.diabetestrialnet.org/
Hi, my name is Pam and I was diagnosed with T1D when I was 2 1/2 years old in 1964 in Philadelphia (Not far from where you are!). As RichardV has said, diabetes treatment has come a long way since then! I too was on beef/pork insulin and had to do urine sugars when I started out. I didn’t get my first blood glucose meter until @1990! Like Richard, I have no complications. Also, neither of my children show any signs of diabetes – and yes, I had them checked through TrialNet at diabetes fund-raising walks for free.
Anyway, I just wanted to let you know that there is a vast amount of resources available to you via both the American Diabetes Association (ADA) and the Juvenile Diabetes Research Foundation (JDRF). I worked at the JDRF (then JDF – Juvenile Diabetes Foundation) in Cherry Hill, NJ while I was in High School. I was both a Mentor and worked in the office. Mentors are people with diabetes who will meet with you and help you through all of this. I believe they also have parents groups you can join to talk to and get pointers from. Both organizations will send you brochures that help answer questions you may have. The ADA also holds conferences that are usually free with presenters on many topics pertaining to diabetes.
I could go on, but I think you get the point. Definitely contact both of these organizations! They are there to help!
PamK
T1D 52years
My son was diagnosed 15 months ago at age 11. We had the advantage of him being able to understand what is going on - so I am sure it is very different for you. What I can tell you is that the feelings of being overwhelmed don’t last. You will become an expert through experience and because you are your child’s parent. What feels overwhelming now will become close to second nature. My kid has been a rock star - and truly considers his T1D “no big deal”. (My other child would have had a different reaction. ) We try not to project our anxiety on to him. Take things one day at a time and remember she is still a kid - and you will all be ok. As others have already said, get connected, get support and ask your questions. Sorry this is impacting you all. Take care.
So sorry to hear about Zoey. T1D is absolutely a life changing event for the entire family. Our daughter Abigail was diagnosed just before her 3rd Bday 10 years ago. Diagnosed DKA and spent 4 days at Boston Children’s Hospital. Some of the best advice came from our pediatrician. She said, “don’t stop being a parent”. I took this to mean that although the disease is going to try your patients at every corner, you have to be strong enough to keep the life you had planned for your child on track. That includes discipline. It will take some time, but you and Zoey will be just fine. Educate yourselves as much as you can and visit a local support group. The newer insulin pumps can be tricky for younger diabetics, but I highly recommend the early use of a CGM that can communicate to your smart phone. This will give you a little extra sleep on those nights when you feel like you have a newborn in the house again. Keep a food diary so you can track how certain foods react to Zoey’s individual chemistry. Most of all, work as a team with your wife, don’t blame each other when things don’t go as planned. Stop the " why her"… “why us” which is a common feeling from any loving parent. It won’t help. You can do this. Be strong and be well.
Sincerely,
Bryan, Colleen, and Abigail Seachrist
Hi bdmb41! I completely understand where you are coming from. My 5 year old daughter was just diagnosed on 12/12/16. I am still in shock and denial to be honest with you. We live in Philadelphia and are receiving care at CHOP. They have been PHENOMENAL with my daughter. Where is your daughter being treated?
Thank you all for the wonderful responses. It’s so helpful to be able to get advice from others in the same unfortunate situation.
@Trama3 - Our daughter was at CHOP and has Dr. visits scheduled there for the next year. I agree, they were great there during our 3 day hospital stay.
We were fortunate enough to catch this so early that our daughter did not have to stay in the hospital at all, she was discharged from the ER! However, we are in the T1Y1 program as well! We go on Mondays!
Wow! I was also diagnosed at CHOP!!! Talk about coincidence! I was diagnosed by Dr Lester Baker. I’m sure he’s not there anymore after all this time! I’m glad his legacy lives on, as he was the head of the department. Not sure I’d know any of the doctors there now. I can tell you that most of the doctors I saw there were good. There was one exception, but isn’t there always? I’m glad to know you’re getting the help you need. Don’t hesitate to post any more questions here. There are a lot of us out here who are willing to help!
Pam
T1D 52yrs
Hello,
I am able to relate to you and others so well. As of two weeks ago, March 21st, our whole life changed. We had no idea that this was going to be thrown at us as it came out of left field. My daughter is 2 years old, and will be 3 in May. She was healthy, or so we thought. She was constantly this happy, bubbly, hardly ever sick outside of the common cold. She still acted “normal” and “healthy” when we were at the doctor’s office. It was crazy, it was fast. We had taken our daughter in for a rash that wasn’t going away even with an antibiotic cream that her previous doctor had prescribed. And we also happened to mention that she had been drinking a lot of fluids even though there was no possible way she was dehydrated. The doctor wanted us to do a urine sample, so it took about a week for us to collect that and then we turned it in. A few hours later, her dad and I both received a phone call from the doctor stating that we needed to get her in that day. So I left work, and took her in. She was given a finger prick and her # was 465. We were then told to go to the hospital to be admitted. Our daughter had just been diagnosed with Type 1 Diabetes with no other symptoms outside of the excessive thirst. I was in shock but rolled with it all through the next couple days.
I dont think it fully hit me until about a week later, I was absolutely devastated.
Hello bdmb41,
I was sorry to hear about your Zoey and your having to join the fight against this disease. My grandson Wyatt was diagnosed at 18 months. Like yourself and others the diagnosis came out of the blue, the only indicators were extreme thirst and wetting through his clothes. My daughter and son-in-law were also devastated. My wife and I and my son in laws’ parents felt helpless and upset, but it can not compare to the pain and fear of parents facing T1d. It is very difficult at first, but with time and knowledge it does get better. Children at this young an age can’t understand what is happening, but this is a blessing of sorts in that they haven’t had the time to develop habits that are so much harder to overcome later in life. Wyatt was then as he is now a typical boy. He plays hard, digs in dirt and all of the things boys without the disease do. As Alicia in Virginia and KSMerk12 have said Zoey is a child first and a diabetic last. Her resiliency, child’s wonder, and acceptance of what is will surprise you as time goes on.
I am sure that you and your husband’s minds are still whirling with fear and concern. To that I say rely on your whole family for strength and support. Ask your doctors and nurses all the questions you think of, there are no questions that can’t be asked. I think you will find that the person with the most strength is Zoey herself.
Now, Wyatt just started the pump 2 days ago. Age is not as much of a factor as it once was. In fact, during our training for the pump, the endocrinologist told us of a 4 month old on a pump. Strides are being made every day for an artificial pancreas. Draw strength from each other and Zoey. May God bless you and all who deal with this disease.
Wyattspoppie