In denial - was 4-yr old's T1D triggered by COVID?

I’m new to the community! and thrilled there is such a strong presence. My 4 1/2 yr old daughter was diagnosed about 3 wks ago. It’s safe to assume that we all had COVID sometime in April. Getting tested here in Arizona is near impossible, just as you’ve heard in the news. My daughter has hit so many lows from insulin shots that we’re constantly juicing her up to rebound. Makes us wonder what we’re treating here, if the treatment is making her worse? My husband and I are in denial. We are pretty convinced that this was triggered by Covid, and maybe ignorantly hoping that it will disappear just as quickly as it came once the virus has finished wreaking havoc. Covid triggering T1D is being documented around the world. There is so much we don’t understand about the disease: https://www.nejm.org/doi/full/10.1056/NEJMc2018688 Thank you for letting me vent. My daughter is now on the DexCom, which has turned us into zombies.

The diagnosis is overwhelming and exhausting. I cried every day for months, convinced there had to be a mistake. A little over a year in, I can say it does become more manageable. It sounds like your daughter is in honeymoon, which means her insulin needs are minimal (if at all). Too much insulin is likely causing the lows. Talk to your doctor or CDE about adjusting her insulin intake.

hello @Angelph and first of all welcome to Type One Nation and the forum. This is a difficult time for anyone recently diagnosed with Type 1. IN very general terms, Type 1 diabetes is a error in an autoimmune response, where your body mistakes pancreas beta cells for an infection and subsequently destroys them. There is no cure for diabetes, and while diabetes onset is sometimes right after a cold, the flu, or other virus, there is absolutely no 1:1 correlations with what causes it. I understand the need to know why, and I get the “what could we have done differently” mindset, but at some point you will have to move only forward, and your daughter will need insulin for the rest of her life to survive.

It is very common for a person to begin making insulin again right after diagnosis, sometimes enough insulin that the person does not need ANY shots! but this thing (called “honeymoon”) is very short lived. It does not mean that “diabetes is going away”, and it is unfair and cruel in a sense because oftentimes, parents believe that their child’s diabetes is “getting better”.

Work with the endo and CDE. if her blood sugars are normal then reduce insulin. The right amount of insulin is the amount that keeps her blood sugar in the best range, if she needs zero… then she needs zero… (again, this is temporary and the way you tell is by using the Dex).

Insulin does not make diabetes worse. Insulin is a naturally occurring hormone necessary for your muscles to use glucose. Without insulin, your muscles will starve. Almost everything you eat converts to glucose - the body’s fuel. Without insulin, glucose also builds up in the bloodstream.

You will have a hard year. You will get through this. You will be an expert inside that first year. You will need some help. The participants here have thousands of years of experience and you are welcome to it.

Breathe, Take care of yourself. blood sugar control is hard… I am an expert and I see 400’s and 30’s occasionally. This is not a disease where you take medicine and everything is fine… this is a disease where you are making decisions almost continually, or at least hourly. You have to balance food, insulin and activity to get it about right and no one is perfect at this!

Hi @Angelph and welcome to the forum. @joe is a frequent contributor to the forum and had given you a good smarty of what to what and how you should proceed. There is a book called Think Like A Pancreas emphasized text the most recent edition of which was published several weeks ago. It may help you understand the physiology behind diabetes and introduce you to some of the technology . I would say the most important thing right now is to find a good pediatric endo who specializes in diabetes - ideally with a team including a nurse educator and nutritionist. You will probably be making frequent calls to the office especially in the near future, and that’s fine. The nurse educator is not a doctor but is trained to help people learn to manage diabetes. They work closely with your doctor and may be more accessible than your physician. You might ask your doctor when you should call which.
Many people are diagnosed with diabetes following an illness - in my case, I had had some kind of “bug” just prior. I’m no scientist (trust me!) but I guess the attack on the immune system by COVID, the flu, a 24 hour bug or even a child, does something to the autoimmune system to make it turn on us, triggering diabetes. There’s nothing you could have done to prevent it, but you can look ahead and learn the tools and steps to help her have a happy, healthy life.

@Angelph Hi Angelica, and welcome to the JDRF TypeOneNation Forum! Here you have found a group of people affected by diabetes who are enthusiastic about sharing diabetes experiences and sharing what each has learned - and also be here to offer consolation when someone is overwhelmed with this awful condition.

To answer your “cause” question first, it is very possible, probable, that your daughter did have Autoimmune Diabetes [TypeOne] BEFORE she had novel coronavirus, COVID. The COVID could have added the bit of additional stress to her body system to make her diabetes more viable. Many people, myself included, can live with symptoms of diabetes for a long time without recognizing what they mean.

As for a “one-on-one trigger” for diabetes, both Dorie @wadawabbit and I can attest that during our 60++ years living with diabetes that we have each heard hundreds of reasons why we “got diabetic”, including it was because we were unfortunate enough to be conceived during a certain lunar phase. The NEJM , article for which you provided a link, supports supports in its opening sentence (complications of preexisting diabetes - diagnosed or not previously diagnosed) what many of us here have been discussing how COVID can acerbate our attempts at effective diabetes management. @Joe, who also has many decades experience while living with diabetes, writes very concisely the “cause” of TypeOneDiabetes.

A thought about your daughter’s real-time glucose readouts that you see on her DexCom Receiver - don’t over-react and jump on every reading - they ARE NOT Pass/Fail exam results, and she never has a “bad” reading - unless there has been an electro/mechanical device failure. The DexCom real-time readings are to be used as guides in her diabetes management - watch for patterns and correlation to her activities and what she has eaten, and to insulin injected. By seeing these trends, and by either reducing certain insulin dosing. or increasing her food at meals, might possibly reduce your daughter’s many lows - or at least their severity.

I’ve been absorbing all of the incredible wisdom you all have shared here throughout the day and appreciate all of your insights. You called it! You prompted me to share her logs with her dietitian midday, and she immediately dropped her long-acting dose and adjusted her meal corrections! I was introduced to the honeymoon phase. I’m hopeful these changes will make a difference in getting her to stay in the perfect zone. These have been a very challenging few weeks, and we’ve gone through the range of emotions, that’s for sure. It has been a learning curve. We are occasionally checking her DexCom readings against finger prick tests, and documenting what else coincides with her fluctuating levels - whether its swimming or a carb-laden meal. With schools opening here in AZ on Aug 17th, that’s another set of preparations as she transitions from pre-k to Kinder. I will be checking out several great resources on the JDRF site for preparing a 504 plan and care plan with her teachers and onsite “Health Assistants” (apparently, having a nurse at each school is a luxury, I’m learning). I’m going to stay hopeful that the cure is around the corner…if we can fast track a covid vaccine, anything is possible! I look forward to mining all the various posts on the forum. Thank you and have a great evening!

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You will be adjusting insulin dose a lot at the beginning. If she is having many lows, she needs less insulin. Her body will produce insulin for a while. My son was in the honeymoon for 2 years. He is very active and plays ice hockey daily, so I know that kept him in the honeymoon longer. He had a ratio of around 1 unit to 6 carbs while in hospital. Two months later we were 1 unit to 50 carbs. We checked in with our nurse daily for the first 6 months reporting blood glucose numbers. She helped so much as well. The Dexcom was a huge blessing. You will learn so much, but it is overwhelming at first. Wearing the Dexcom gives us all so much more freedom. You will grow to depend on it and love it. Everything is so scary, confusing and hard at the beginning.