My daughter was diagnosed with Type 1 in January 2022. We discovered it early so she was not in DKA. She is 8. The crazy thing is she started getting very nauseas and complained of fullness. We did an X-ray and her stomach was emptying VERY slowly. They prescribed her erythromycin 3 times a day before meals. Her endo says she has not seem a patient that young with gastroperisis. She did test negative for celiacs. Her endo also said she does not think gastroperisis is associated with her type 1 because it would be too early. I am at a loss, how could this happen? It has been a roller coaster treating both at a young age for her. Anyone heard of this and what is your advice?
People get gastroparesis that don’t have diabetes. Diabetics are susceptible at a much higher rate than people that don’t have diabetes. I believe it’s also more likely to happen after you’ve been a diabetic for a certain amount of time. I would assume that is why her endo doesn’t think it’s diabetes related. I don’t believe they actually know for certain what causes it to happen. So I’m not sure you’ll get an answer as to why.
You could try a children’s hospital to see if they might have more information on it in young kids? Maybe a kids gastroenterologist?
The problem with type 1 diabetics is it makes it a lot more difficult to manage blood sugars levels. Since the stomach empties slower, you might need insulin later, but how much? And sometimes the stomach doesn’t take as long to empty. It definitely makes it more difficult to manage.
If you don’t have her on a Dexcom with the alarms, get one ASAP. Dexcom also has a share ap so you can keep track of her blood sugar levels wherever she is.
Thank you for your response. She is on a Dexcom and an omnipod pump. She has a gastro appt in a week. I just wish I could heal this gastro problem. Having diabetes is enough for her
I had gastroparesis for a number of years after I got Type 1 and it went away. I do not know why I had it or why it went away.
I suspect anxiety played a role.
You should definitely look into all the possibilities of what’s going on, but it might be worth putting anxiety on the table as one of many possibilities even if your daughter doesn’t talk about being afraid of her diagnosis.
I have a daughter who has a learning difference. When she was in a general ed school in third grade she seemed happy, well adjusted and all her teachers praised her. She had lots of friends. We switched her to a school that specializes in learning differences in fourth grade and, after she had been at her new school for a few months, she started talking about how anxious she had been and how much she hadn’t understood at her old school and how much she hated feeling different. We knew she had a learning difference in third grade, but we didn’t really know how it had been affecting her emotionally. She really covered it up.
I obviously know nothing about your daughter, but I was surprised by how much my own daughter at a young age kept things inside and wanted to fit in and be perceived as good and happy. To be clear, she actually was both good and happy, she was just covering up that, at the same time, she was very nervous about being different. There’s a pretty good kids book about this called Double-Dip Feelings.
My daughter is not diabetic. I’m the type 1 diabetic in the family.
I experienced gastroparesis but it remains a mystery to me why I had it or why it went away. Hopefully parents on this forum will have more insight into how being diagnosed with Type 1 affected their kids emotionally at different ages.
I’m so sorry about what you’re going through. I feel lucky that I’m the one with diabetes rather than my daughter. I hope the gastroparesis goes away. I think your endo is absolutely right that it is not directly a complication of diabetes in terms of nerve damage given that your daughter is just in the first months of being diabetic and if she were ever to have any complications of that kind they are many years in the future and, with any luck, will never happen.
Thank you so much for this reply, it gives me a great deal of hope! I will definitely look into anxiety that could be playing a role.
@ChloesMom Like @Tnyc, I’m also a former gastroparesis sufferer. It developed rapidly in the mid-80’s following 20 years of (type 1) diabetes.
I was put on Cisapride (propulsid) for several years until they pulled it from the market over concerns of serious cardiac events.
I can’t remember what drug they replaced it with, only that it didn’t work as well and I was reluctant to take it. I ate nothing with fibre in it for 4 or 5 years and almost magically the condition resolved itself - I’ve had no problems ever since
Great! This is giving me hope!