Introduction

Hello…I’m new to the groups, but thought I’d take a minute to introduce myself. I’m the mother of a 17yr old T1. Wanna hear the weird part?? She is currently only on 2 units of Levemir. I know…how can that be?? Well…here is our (long) story…

Karly was diagnosed at age 6 with Ocular Myasthenia Gravis (autoimmune). She was placed on high doses of steroids for approximately 18months. After that, she went into remission with the Myasthenia and was fine until about age 11 where she had another relapse. She went on another tapering dose of steroids. After complaining of not feeling very well, routine blood work showed blood glucose of almost 900. Off to the hospital we go…she had a ton of blood work done, went on insulin, tons of teaching and we went home. After coming down off the steroids, she came off the insulin. So…we are thinking steroid induced hyperglycemia…T2…??? Nope…antibody testing showed T1. Good news was that she was not on any insulin at that time. (since no steroids) Fast forward to age 15…she was not feeling well again and low and behold, blood sugars topping 800. Back to the hospital and insulin we go. Here we are today, after 2yrs of Lantus and Novolog she began having chronic lows…as low as 28 or so. We reduced all of her insulin to nothing and she is currently having normal glucose levels. Let me add that at no time in the last 2 years has her A1C been over 5.6, even on minimal insulin. (10 of Lantus…only covering for carbs at meals with Novolog) Last week we saw the 3rd doctor regarding her “odd” diagnoses. Of course we were hoping and praying that she has been misdiagnosed all these years, we weren’t so lucky. All antibody testing came back the same…she’s T1. The only explanation the docs have is this: all the immunosuppressives that she was off and on has somehow “preserved” some pancreatic function at this point. They are trying to help “rest” her pancreas by introducing extra insulin. Will it work?? I don’t know but at this point I’m willing to try it. I don’t think it can hurt her. I also need to add our extensive family hx: my maternal uncle is T1, bilateral amputee, kidney transplant and virtually blind, his daughter T1, my sister T1 and her 10yr old son is also T1. My paternal uncle is T2 and horribly controlled, his grandson is T1. So…ugly family history.

I am thrilled to find this board and looking forward to learning from everyone’s experiences. I am an RN and even though I see it at work every day, it’s not the same when it’s your child. Thanks for allowing me to be a part of this!

Welcome Jill,

This is a great place for parents with T1 children. Thanks for sharing your story.

Larry

Welcome to Tudiabetes Jill! You will find a host of resources and compelling personal stories on this site. Please check out the groups too for more focus on what you are looking for. I know you will meet many great friends on this site! Thank you also for sharing your story and saying hello. Wishing you the best on your journey!

Hi Jill,

Welcome to the community!

Karly’s is quite an interesting story. What are her antibody & C-peptide levels?

I believe her antibody levels were 80 and her last c-peptide was 2.9. Strange…I know.

Yes:) Your daughter is a wonder.

Bet Dr. Faustman would love a sample of Karly’s blood for her research.

Well…we have a motto in our family. “If it’s strange, it’s gonna happen to us.” lol At least we have a good sense of humor about it all. :slight_smile:

Thanks for sharing your very interesting experience Jill…how’s Karly doing in all this?

She is actually doing very well. Her fasting sugars have started to rise in the last few weeks. I think they are going to put her back on Lantus and stop taking the Levimir. We just take it as it comes.