Type 1 Without Family History

Newly Diagnosed
#1

My son was diagnosed as Type 1 about 7 weeks ago so our family is very new to all of this. The past several weeks have been incredibly difficult to process and we’ve shed many tears along the way. With this new diagnosis has also come a bit of guilt as well. I feel like the signs were evident for quite some time, but we just didn’t act on it as soon as we should have. At the time of hospitalization, my son had an A1C of 14 with large ketones present. He was not in full DKA, so he was admitted as a “regular” patient and not as an ICU patient. We have struggled the past several weeks to control his highs and lows. He is currently being dosed 6 units of Basaglar at bedtime and a ratio of .5 units of Novolog for every 10 carbs. I have so many questions to ask, but for this particular post, the question I have relates to family history. We have no family history of Type 1. We do have several close relatives with Type 2 and several who are pre-diabetic, including myself. We have an older daughter who is not diabetic. Is it uncommon to have a child with Type 1 when there are no other known relatives with Type 1?

Thank you all for allowing me into this forum. I will have many more questions in the weeks ahead.

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#2

Hi @mm92599 welcome to Type One Nation. It is very common to have no family history. I had no one else with T1 in my family when I was diagnosed in the late 1970’s either.

I hope you have access to a diabetes educator and an endocrinologist. The educator will be most helpful at first.

If you like to read please consider buying “Think Like a Pancreas” it has very useful information that will really help you.

This forum is visited by a crew with collective experience of hundreds of years, but we can’t give medical advice. We help each other by sharing experience and strength.

Please also visit the JDRF and look up your local chapter for possibly local support as well

You did nothing to cause this. T1 is an autoimmune malfunction and not caused by diet in any way. It is likely your son will experience “honeymoon “ and so the first year can be tough figuring out the right amounts of insulin. It is common to need more as his body stops making insulin entirely.

I consider myself an expert in using insulin, with just over 40 years as a T1, but I often experience highs and lows. No one with T1 has perfect control all the time. With the advancements in CGM it is possible to monitor blood sugar very closely.

I hope you take advantage of the experience here and feel free to ask anything.

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#3

JDRF’s webpage says “90 per cent of people who develop type 1 diabetes have no relative with the condition.” Crazy, right? Especially since there IS a genetic component. But there it is. We didn’t have anyone with T1D in the family, either.

It’s a whirlwind — there’s so much new information to process, and there are so many new things to do, and you probably thought you were stretched too thin before this diagnosis! — but I promise, you can do this.

Ask anything, browse around (especially under the “newly diagnosed” and “parents” categories), and trade some of that guilt for credit: you got your son the care he needed, and you’re here, so I’m thinking you’re committed to continue ensuring he gets that care. That’s not nothing. It’s practically everything.

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#4

Welcome to the Forum. At 69 yrs of age with T1 for 65 the origins of my own T1 remains unknown. I was the first T1 on either side of my family. After I myself came a maternal first cousin, my youngest sister by ten years, & 3 first cousin’s once removed in the next generation. Neither of my daughters (ages 39 & 40.5) have the markers for diabetes nor do I have any nieces or nephews with it.

It can be very difficult in the beginning to stabilize & treat active juveniles. Believe that all will be accomplished. Here I am 65 yrs after diagnosis & my own mother took care of me then my sister without benefit of home bg monitoring, A1Cs, a wide variety of insulins & doctors who did not have today’s treatments at their disposal.

At the rate research develops on treatments & cures I do believe a cure will come within your son’s lifetime. Prayers & best wishes for getting him stabilized.

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#5

Hello, @mm92599 welcome. I was diagnosed just under 4 years ago and have absolutely no family with type one diabetes. I think as others have said, it is pretty common. This is in no way your fault and please do not beat yourself up about warning signs. Most people do not even know what the warning signs are and you may feel, after researching or finding out what they were, but at the moment it would have been extremely difficult to realize and likely something unexpected. I had mild symptoms and I didn’t even realize I had been having them till after I was diagnosed and the doctors told me about warning signs. It is not your fault as I am sure you have been hearing a lot, but it is true. The beginning is always hard, but you will start to get into a rhythm and find out what works for him and his body. You will find what he needs and what helps him feel better and stronger. Him, you, and your family can do this!! I am glad to see your post here for some advice. It is a great place to start for support in tough times.

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#6

Thank you all for the words of encouragement and support. I have so many thoughts and questions running through my mind that I often times don’t even know where to begin. This forum is an incredibly valuable resource and I am thankful to have found it. I will have many questions to ask so hopefully you all won’t get sick of me.

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#7

My uncle and cousin (his son) on my dad’s side have/had diabetes (uncle passed many years ago). I believe my uncle had it when I was diagnosed at age 3, while my cousin was diagnosed when I was in my 30s.
Diabetes symptoms can mimic lots of things so please don’t beat yourself up. Many people are diagnosed following an illness - my parents told me I soared to have a “bug” of some kind and while I recovered from that it seemed something rise was going on, which lead to my diagnosis. Apparently illness affects a compromised immune system.
The important thing is he’s getting treatment now. I remain the only Type1 in my family - and am doing great.
You’ll find lots of support here - including patents who were scared when their child was diagnosed and have come a long way along with their child’s in learning to manage. Hang in there, find a good endo who manages Type 1, ask questions and give yourself time to learn.

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#8

Mike, I do want to be supportive. Re: guilt. As other members have written there simply is no one to blame. For a long time my Mother falsely & illogical blamed herself that my sister & I had diabetes. As a young adult I stayed as well read about Type 1 as I could for a non-professional. I was able to convince my Mother that she had nothing to feel guilty about. Diabetes in my generation in my family was very random. Guilt is not a good motivator for helping any child living with a disease. I sense that you love your son. Your love is the best reason to let go of false guilt. Undeserved guilt usually results in responding to a child’s emotions of frustration & anger with poor management. I don’t know about other forum members but as a 4 yr old up through ages ten to eleven I was super frustrated & angry at having diabetes. I blamed God. My Mom just allowed me to get it out & didn’t react to those emotions. I was never told that I shouldn’t feel that way. To be clear my Dad was supportive but followed my Mom’s lead in managing my diabetes.

You wrote that the whole thing is new to your family. That’s a good way to look at it. It’s not just your son affected by diabetes but the entire family. Everyone including close extended family needs a little basic information… As you proceed please know that your son & family will adjust. I & other members can assure you that he can have a very happy life.

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#9

@mm92599 Hi Mike, from another Mike.

I also have no family history of diabetes, but bath my sister and I have T1D. Apparently that’s pretty unusual. Anyway, the main thing is to move forward. If it’s any consolation, T1D is much more manageable today than it was 40 years ago. Your son should lead a long, healthy, and happy life. Once the “honeymoon” period is over, if it’s financially possible, I’d recommend getting him on the best technology, which currently is (my opinion) the Tandem t:slim insulin pump paired with Dexcom G Continuous Glucose Monitoring System. If you use FaceBook, please consider joining diabetes-related and technology-specific user groups. You will get much more feedback to your questions and concerns there. Best wishes - you guys can do this!

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#10

@mm92599 Hi Mike, and Welcome to the JDRF TypeOneNation Forum!

As several people have already posted, your son being the only one in the family to have TypeOne diabetes [T1D] is common; only about 10% of newly diagnosed have a first-degree relative with T1D. You didn’t do anything wrong, so don’t “take the blame”; Autoimmune Diabetes, the proper name for T1D which is caused by the body’s immune system mistakenly identify beta-cells in the pancreas [the cells that produce insulin] a “enemy” and tries to kill them off.

When I was diagnosed in the 1950 diabetes was a mystery an unheard of in my family - among my siblings, I’m #4 of 8. I too, may have had unrecognized diabetes for quite a while before diagnosis, so you are not alone in that regard. Right now, you will need to help your son learn the very tricky balance between Food, Activity, and Insulin to help him grow and flourish - and these days you have many really awesome tools. And many people here who will offer you tips that we learned along the line.

The GOOD NEWS is, diabetes will not keep your son from doing what he wants - he can have a full, active, productive, and long life.

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#11

I have been T1D for 68 years and to my knowledge and research, I was the first in either Paternal and Maternal families to develop T1D. I fortunately had a great pediatrician in 1952 who recognized my diabetic symptoms. I meet with and follow instructions of my endocrinologists. I often have Highs and more often lows but through my endocrinologist we have worked through them.

Welcome and keep asking questions. There afe many on this forum who have been through what you are going through.

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#12

Not at all unusual. No history in my family either.

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#13

Same here. Diagnosed at 7 years in 1973 and no one in my family was known to have diabetes at the time. 2 older brothers, and 3 nieces or nephews now in their 20s and I am still the only one. Good luck. And, I don’t know how to say it, but don’t feel guilty. We all only know what we know.

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#14

For keeping things attached to your skin, I have started using Skin-Tac liquid adhesive. I haven’t come close to anything falling off or becoming loose. I ride bike daily, and my arms are always moist from that, swimming, snorkeling, laying on a flotation device for hours in the ocean, and it doesn’t come lose.

#15

I had no one in my family. BUT. CDC says T1D is up 30% from
2017-2020. Any doctor (I’ve asked) will tell you that it is environmental with that kind of increase. I keep thinking. What are we missing emf’s. GMO’s. Combo? depleted nutrition from bad farming practices. Monocrops? All the additional vaccynes. ?? Idk. We’re missing something. I would like to tell you all of his dreams are possible. Every one. No limits. Just a learning curve to take over the job of an organ so be patient with yourself and know that wveryone here has been in your shoes. Mindset is the most important thing. Focus on the future and creating the most outrageous life he can dream. The rest falls into place because it has to to achieve it :). BigHug and here if you need

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#16

Just wanted to say I’m sorry to hear about your son’s diagnosis, and I know it is very difficult in the beginning. Our son was diagnosed 18 months ago, and in those first few weeks and months, it was a rocky ride as we learned more about the condition and how best to manage it. We also felt guilty as he had been drinking a lot more water, and losing weight, but he was 15 and boys are changing a lot during those years. He was also admitted to hospital, and over the course of about 6-8 hours they brought him down safely to where he should be. It was very scary for us as well.

As many will tell you, it does get better, and as you gain experience and more information, you will feel more confident about your son’s care, as will he. My brother has two sons who were diagnosed when they were 2 and 12, but somehow I never imagined that my son would have T1D.

This community is so caring and supportive, and typeonenation does such a good job of making it possible for us to learn from each other. I have gained so much from this format, and everyone is so understanding and respectful. You will be able to learn a lot from the information available here.

Our son was 15 when diagnosed, and now he feels quite confident in his management of his T1D. We are so proud of him for the way that he has handled it. But we also know that sometimes he has good and bad days, and not all teens react the same under these conditions. Love and support are the constant themes, and we strive to help him to have as normal a life as he had before.

We found the CGM to be a great help, then eventually when the pump became available, that has helped a lot, as well. Hang in there, your son is lucky to have parents who reach out to others for help and answers.

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#17

Hi Mike,
Also from my side a little support: You are not guilty! Don’t feel guilty, because my parents also did that, which just led me to not talking to them about my fears and worries, because I didn’t want them to feel even more guilty and I hid all my bad feelings behind a “all is well, don’t worry!”-mask.
One little positive aspect with juvenile diabetes can be (doesn’t have to) that the kids get more responsible sooner than their peers, because they directly feel the impact of irresponsible behaviour. If that is any consolation for you… I got diagnosed when I was 14 and I definitely wouldn’t be where I am today without my T1 and therefore wouldn’t want to change anything at all (and I “talked it all out” with my parents later, so even that helped me in developing the skills to voice my feelings). Sometimes hurdles thrown in your way are blessings in disguise.
I wish your son and your family the strength to cope with the new situation.

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#18

I’ve been T1D for 35 years, no family history, although, my dad had a lot of other autoimmune diseases, so I think I inherited something there. And, unfortunately, my son was diagnosed in '19. So, I do think there is something in our genetics. And, I have had my moments of guilt over passing this on to him.
I would highly recommend the use of technology for assistance. We have had great success with the Tandem system (Tslim pump, Dexcom G6 CGM). If you are not ready to pump (we weren’t for the 1st year), definitely would suggest a CGM. There is a lot of data you can get, plus, with the Dexcom, you can follow your child’s BGs at all times on your phone. This has been huge for us! Now, with the pump too, I can message with my son while he’s at school, and guide with sugars, doses, etc. At 10, he is already becoming more independent, and together, we have avoided severe highs and lows.
All that said - nothing is perfect. Your child will grow, get sick, go out to play when you weren’t planning on it, etc. My analogy for diabetes control…there’s no perfection, more like bowling, with the bumpers on.
Utilize this forum for questions - there are lots of folks here happy to help!

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#19

Hi
You have received many helpful and kind responses that I hope have given you some feeling of comfort and support. I too have a son who was diagnosed at 17. My guilt was over the top for the same reason as you. I should have known better as he lost 25 pounds but had to stop playing football due to an injury so I thought that was the reason. When I FINALLY took him to Dr. it was for something else and they recognized the signs. His A1c was 14. He continued to play all sports thru high school and college. Setting up a 504 plan was very useful throughout school as one of my other children was also diagnosed 8 months later. Truth is It was VERY tough on me as a mom. Especially when they went away to college. They are both on CGM’s which has been the best decision EVER!
Be kind to yourself and know that it does get easier and our kids are so resilient!

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#20

Hey, I was also just recently diagnosed and nobody in my family has Type 1 just 1 uncle with type 2 but I am not related to him but only through marriage and IDK my dad’s side of the family but my mother says that there was nobody on that side either. LOL who knows!!!

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