Newly diagnosed child

Hi - my 8 year old daughter, Lily, was diagnosed with Celiac Disease at 22 months of age and was diagnosed with Type 1 Diabetes last week. I am of course overwhelmed like all of you were at diagnosis. I think we have done pretty good this first week, but I am looking for resources. I don’t have hours and hours to do research, so thought I would start here. What information do you wish someone had told you the first week? What things have helped your child adjust the most? Currently she is afraid to go to dance class and play at recess because she thinks her sugar might go too low. What has helped most with older siblings? Am also looking for financial assistance with supplies. Any words of encouragement or advice would be appreciated! Thanks

hi @MichelleCE,

hey sorry about your daughters diagnosis. the first year can be a tough one. i may be able to answer some things from the perspective of having t1 for a very long time.

insulin - exercise -> blood sugar goes down
sugar (in any form) -> blood sugar goes up.

all forms of good blood sugar control come from some kind of plan, involving all 3 at all times.

you will get the hang of this, but I am afraid that you will have to make time for research and for observations because (as you will quickly find out), you are your daughter’s primary care person and all hour-by-hour decisions will go through you.

I urge you to be very close with your daughters CDE if you have one, or if you can get one. A certified diabetes educator will get you through these early months and help you get a plan together.

greatest first book - “Think like a pancreas” its on amazon.

continue to reach out for help there is a lot of experience here… and good luck!

Welcome to the site: I can tell you this “place” has been most helpful. The best advice I can give you as a mother of a child who has been recently diagnosed (14 weeks my daughter is 9) … is cry, be mad, be scared, be unsure, even laugh but do it TOGETHER!! Its amazing how much strength you will find your child has. Also allow your child to adjust at her own pace, play time isnt that important right now. Her whole world will never be the same… in fact “normal” is not a word- but a “new normal” will begin… that was possibly the best advice I got. It didnt make sense then, but it makes sense now. Also Joe is right- you will find that research is mandatory, will be like a vacuum sucking up countless hours of research, you just cant help it.

Best advice I think I’ve gotten so far (7-yr old daughter with celiac Dx at age 5, T1D Dx 9 months ago at age 6) was to “follow the numbers.” I’m a control freak by nature, I like to have a plan, and the fact that sometimes, I can’t figure out why her sugar is whatever is at that moment is really frustrating to me. But over time, I’m making peace with it.

Of course you do what you can to keep insulin, carbs, and exercise in balance, but sometimes, her sugar’s off anyway. Don’t beat yourself up, just follow the numbers. If it’s low, carbs; if it’s high, exercise/more insulin. And then get on with life. The number’s not a judgment, it’s just information that allows you to get her what she needs.

With T1D, there’s a lot to assimilate, but human beings are incredibly adaptable. Keep asking all the unbelievably kind and generous people here for help, definitely lean on your CDE, and be grateful every day: life is basically good!

You are doing the right thing by seeking advice from other parents with type 1 kids. I was diagnosed in 1945, when I was 6. After 70 years of type 1, I do not have any serious diabetes related complications. The life expectancy o young type 1 people in the US is almost as good as it is for non diabetics.

I have joined several groups for parents of type 1 kids on Facebook. The help you can find there is wonderful. They like hearing that people can live so long, without complications.

The best of luck to you and your child!!

@RichardV- that is amazing 70 years!! I actually re-read your sentence three times to make sure I didnt make a mistake. I have read some stories about how today diagnosing children today with T1D is missed (sometimes fatal). It must have been truly challenging in 1945.

Hi, So sorry to hear the news of your daughters recent diagnosis. My daughter was diagnosed at 9, she is 12. As far as I could tell we were the first to be diagnosed in our elamentary school of 800+ students because other than a teacher who experienced gestational diabetes, there was NO support. The best advise I can give is to use all the resources you have available to you to help you. You will still need to be your daughters diabetes expert and her strongest advocate, showing you are unafraid to do what is right for her. (I found the American Diabetes Safe at School program very helpful in setting up a 504 plan and later for enterance into a reluctant school.) She will follow your lead. Early on, I and later may daughter took a strong stand that we could do everything we did before diagnosis. My daughter was very active before diagnosis and I was determined that she remain so after returning to school. This took alot of planning, volunteering and inquiry on my part. Today, my efforts have paid off as my daughter does not see T1D as an obstacle to fun and activity, we just need to plan a bit more than most. She plays volleyball, skies, plays the piano…just like her peers… Always believe in yourself and that things will get better. With your added experience and with your support of your daughter, they will get better and easier as time goes on.

@shariza, my parents took me to four different doctors before my symptoms were recognized. The first three did not have a clue. If my parents were not persistent I would not be here today.

Hi Michelle, This is a huge learning curve for you and your daughter. I would suggest working with a JDRF mentor. Connect with your local chapter as they will be a lifeline for you.

I was diagnosed at age 7 and I remember the fear of not wanting to drop low. I REALLY didn’t like the way it made me feel. Check her blood-sugar often and treat accordingly. My mom used to give me starbursts before I was active (swimming, biking, etc) and it helped me through the fear. I don’t remember the carbs but I don’t think it’s high.

Remember to go easy on yourself. This is new to both of you and you will feel a myriad of emotions. Walk through them gently and before you know it…your daughter’s diabetes won’t be so overwhelming. It will be just a part of your daily routine:)

Good Luck and Stay Strong:)

Hi michelle! My daughter is also 8 and we just recently hit our one year mark. She also was diagnosed with celiac. The first year is definitely hard. I would recommend finding someone with type 1 to talk to, ask questions, and sometimes so you can vent! Someone mentioned starburst and we do the sane thing. They already have to deal with so much so we try and make thing special and fun when we can! Keep in mind that gluten free foods do not always match up well with the carb-insulin ratios. I would stress myself out and after a few months had to tell myself that it’s trial and error and she’ll be ok. My daughter was the same way with being scared. She’s sn excellent swimmer but was terrified to get in the pool. She slept with her lights on for weeks. They just need extra love and support and she may just want you to be there with her. Baby steps!!

Tell your daughter to get back to dance class. I was diagnosed at 4 and did tap, jazz and ballet through my late teen years. She can do anything she wants except join the military. She just needs to have some glucose around in case she has a low blood sugar.

I don’t know of any magic financial resources. Basically I’ve learned to get jobs with good insurance and expect to pay hundreds of dollars a month in co-pays (I use an insulin pump, which is more expensive but totally worth it).

I’ve had diabetes for 38 years and am complication-free, married, mom to a handsome son, and work a busy job. Your daughter is going to have a good life. It’s just going to be a little different than you expected.

Take care. JennaGrant