Type 1 father always worried

Type 1 and LADA
1

Hi everyone,

I was diagnosed type 1 at 26 while in grad school. Got married 6 years ago and we have an almost 4 years old daughter. We breasted exclusively for 6 months as we read it helps with lowering the probability.

Anyways, I started random checks on our daughter when she was one. I must admit I am paranoid about her becoming diabetic. I feel like I would not forgive myself. So here are my questions.

  1. I never really see numbers above 125 and that’s good but I also never see numbers below 95. I check in the morning before food and she is always 98 to 110. Do kids have different glucose levels than adults? It bothers me that I never see an 80 numbers but I read somewhere that kids eat all the time and that their numbers should be higher.

  2. I contacted trialnet. They are pushing for us to take her and have her tested. My wife is against it as she said that there is nothing we will gain from knowing other than worry and not let our daughter enjoy life every day. Obviously I would like to have her tested. Any views on trialnet would be highly appreciated.

  3. How do any of you just relax ? Seriously I go through periods where is don’t think about it and then i go through period when it monopolises my mind.

Sorry I know I sound paranoid. Just nowhere else to turn and talk to. Think I have exhausted the discussion with my wife

Thank you

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@David7. WOW! First things first. WELCOME, your load is heavy. Let me share what I do and don’t know.
Comments to your points:
Point 1. Children are not tiny adults. Their bodies operate in a different orbit. Your observations are good & I hope you have them documented including meals, activity & wellness, so the environment the number was from is clear. Research glucose normal values for children, including consideration of the site: forum.jdrf.org which looks at type one across the lifespan.

Point 2. I was unaware of trialnet. A quick read gave me the idea you may be on a good course. However, remember you want the BEST course, not necessarily the GOOD or BETTER course. Not chatting with you and your spouse, I would not jump into your marital bliss. I am not a trained councilor or one to give this type of advice.

Point 3. If I tell you to stop thinking about the elephant in the living room, how do you stop thinking about the elephant? Relax is a hard thing to do. How about shifting your focus. A normal A1c is below 5.7, where is yours? How well are you managing? Research has shown the better one’s A1c, the lower the risk of complications. Can you focus on yourself a little more? What does your bride believe? What train would she be willing to join you on in this family life quest? On first read, I would not call your response paranoid, you are doing what a man is hardwired to do, look out for family. I read a hormonal study indicating women look for providers and protectors, while men have hormonal hard wiring to find the woman to birth children & rear them.

POINT 4. The unsaid item in your post is a “cost to benefit analysis” of all of the options on the table.
(1) What does your family’s health care team say when you bring ‘trialnet’ up?
(2) What is the projected cost of ‘trialnet’? Travel? Lodging? COVID exposure? Work disruption? Stress on daughter & wife? and many more.
(3) How will the family use the findings? Positive reaction & plan? Negative reaction & plan? Marital harmony impact either way?

Keep the group informed. Sharing is how we all learn.

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I have a 8 and 10 year old and I worry about this too. I got type one at 35 (2 years ago).

My understanding is the average person has a 1/300 chance of developing type 1. If your father has it you have a 1/20 chance. I don’t remember where I read that so feel free to challenge that ratio.

Probably 3-4 times a year I to a blood sugar check just to see if they ever have an unexpected high sugar. So far I don’t think I’ve seen anything above ~135.

I have 2 things I’m doing for them.

  1. Know the signs of type 1 and pay attention to them so you can catch it early. (Thirst, weight loss, low energy etc…)

  2. I give them both 2000 UI vitamin D per-day

There are at least on going trials to study if Vitamin D reduces the chance of developing type 1 so we don’t know yet.

  • Its considered a safe thing to take
  • It’s believed to help with COVID and other types of infections

I have thought about doing the trials.net but I know my girls would not want to do the blood test so I’m not making them. It won’t change anything just maybe provide an early warning.

I feel confident that if they develop type 1 I’ll know well before they reach DKA since its always top of mind and I can check their blood sugar anytime I’m concerned.

It’s a bad feeling as a parent to have in the back of your mind you might have passed this on to your children :frowning:

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One thing you don’t appear to factor into your consideration of TrialNet participation. If a child of a T1D parent starts to show antibodies indicative of T1D, the family can participate in studies designed to slow down the progression of the disease. Sometimes this may translate to a delay of the full onset for years, prolonging the time of natural insulin production.

At your daughter’s young age, she need not be burdened with the knowledge of testing positive for the antibodies but if she does come up negative for the antibodies, you and your family can be relieved of this nagging concern.

Type 1 diabetes represents a real threat to the growing percentage of children who must respond to its life changing consequence. TrialNet is an effort to better understand how this disease works and your family’s participation would contribute to that goal.

I truly believe that T1D will eventually be decoded, understood and prevented. That would mean untold relief of the suffering it represents, a noble cause.

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My grandmother had T1. My mother had T1. I have T1. That said, none of my 3 children got it and they are now in their late 50s. None of my 10 grandchildren got it. Neither any of my 4 great grandchildren. No point to worrying about something one can do nothing about. So I don’t worry. You should not either.

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I have had type 1 for 61 yrs. My 32 yr old son does not have diabetes, but was dx at 7 yrs old with something I consider to be much worse. At 11 he developed another horrible condition. I don’t remember ever worrying about him becoming a diabetic. I certainly did not worry about him developing the genetic conditions he did get, because I wasn’t aware of them. He definitely does not blame me for them, and blaming myself makes no sense to me. What good would that do?

Your child is going to pick up on your fears, and that will do her no good whatsoever.
I wish you could just let her be and not keep testing her blood. If she starts showing any signs of diabetes, you will recognize them right away and you can seek help then.

Have you considered getting some counseling to help you control your fear? All of this worry is not doing you any good and it certainly isn’t helping your daughter at all. Your daughter could eventually be dx with diabetes, and if she is you and she will deal with it. It certainly isn’t the end of the world. Her life will be harder, but it could still be a very good life.

My son, whom we never thought would be able to live on his own or hold a job, has his own house, a job, and is getting married. He is a very intelligent happy person who deals with his health issues very well.

Have faith that all will be well.

Marilyn

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I have no advice about # 1 and 2 other than hang in there, but as for #3…
The way I look at things, if I am physically active and managing my BG as well as I am capable (given everything else life throws at me), that’s all I can do. Once satisfying those two needs became very high priority parts of my daily routine, I was able to “leave the worries behind” and relax. The only time diabetes monopolizes my mind is when I get stuck on something inactive, like working on computer, long drives, etc.

Have you looked into mindfulness? Not plugging (I’ve never done it but have a friend who is very into it) but just wanted to mention that to my understanding mindfulness is perfect for managing worries about things that are sort of plopped into our lives.

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I was Dx’d at 17 and I am now 63. We have two sons 40 and 42 both without diabetes and three grand children 12, 11 and 10. All without diabetes.

I worried for ever about our sons and and that worry nearly drove me out of my mind.

Today we have better approaches. First I do agree with the vitiation D, no not a miracle medication, those who are diagnosed are sometimes found to have a vitamin D deficiency. I take it and would suggest it for anyone with this concern.

A far better approach woudl be to enroll your child in trial net. Not only will their participation help you know that your child is not spiraling toward diabetes, but that in some cases there might be things to be done to forestall onset.

Here is the link for trial net. If my sons were young they would be in for certain.

https://www.trialnet.org/

I wish you well, here is where I came too when my sons were little. There was not a thing I col do about it no matter what I did. So worry less and enjoy your children, they deserve it.

rick

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I have a kid and I was worried too when she was young and I would check her sugars. It was all over the map. She never developed it at least not yet. She’s 16. But I have seen some high sugars now and again.
We had her tested for antibodies and she is negative.
Her doctors told us she has no issues right now and looks like she probably won’t.
It really is a relief to get them tested.
And also there are some meds that can slow or prevent the progression of t1, so knowing is better than not knowing.
My daughter was tested 14 years ago, I bet the tests are better now.
Besides that if it helps you to know, a type 1 person has Just less than a 1 percent chance of having a type 1 kid.
A non diabetic couple has a 0.75 percent chance so really it’s not that different.
although there is a genetic component likely, there has to be a perfect storm of conditions present in order to have the disease.
You need to get an infection that your body misunderstands and turns on your pancreas.

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We opted out of trial net for my son. His older sister has T1D. I subscribe to the school of thought of dont worry about what you can’t control. We know the signs and will recognize it early if symptoms start. I just didn’t want to put him or us through the process of testing and worrying about something that is not likely to ever happen.

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I understand that sprocker1, but trial net now is actively testing ways to delay the onset of T1. Gaining a few years seems well worth the effort. But that is just me.

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I know how you feel, my spouse is a T1 and his father too. I’ve checked my daughter’s blood sugars since she was a baby and just recently as a teen, her fasting has been over 100. And then one day they were over 200 after a high carb meal. And there was glucose in her urine. We’re just waiting on a doctor’s appt to confirm our worst fears. But at this point it’s pretty apparent she’s in the early stages of eventual T1.

She was in trialnet many years ago, but we didn’t follow through with it, and we decided not to know the results. No point in knowing if she was higher risk and then may or may not end up getting it.

It’s such a crapshoot, this condition. We don’t know what can trigger it. We supplemented with Vitamin D, breastfed…but still. At one point, the anxiety of her getting it really did consume my life. But then I decided that there’s nothing I can do to prevent it other than go on with my life and try and catch the condition early by checking blood sugars occasionally. If it happens, it happens.

And it happened.

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Sorry to hear that. But it’s possible it was a bad read. You never know. I agree with you on trialnet. Will pass.

Thank you for sharing. There is a company called viacyte that seems to have shown promising stuff coming along.

I hope it turns out ok.

David

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There are many promising treatments on the horizon. I follow this blog (written by the parent of a T1) now and then to see what’s in the pipeline currently.

I used to read statistics and replies from other T1 parents all the time to see if their kids ended up getting T1 too. Many replied no, a few said yes. Even if the odds are that most kids won’t get it, we just don’t know what side of the odds we are going to be on.

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I wish I could give you an answer but these are very personal questions with very personal answers.

Blood sugar numbers can only be used for each individual person. My numbers are completely different than the next persons. Neither is good or bad but personal.

TrialNet is very personal. I never wanted children because I didn’t want my children to have to deal with this nightmarish disease. But we did end up having tow beautiful children. And here is my very personal opinion. The treatment plans now vs 50 years ago are light years apart. I mean my pump system allows me to almost completely stop thinking about my diabetes. There is so much available now to make diabetes much more manageable. And as to testing? Both my kids were part of TrailNet a long time ago. Our thinking was, if we can help make things better for others why not?! And my worst fear my daughter tested positive on the first test. Thankfully she didn’t qualify to continue and it has been over 20 years and still ok. But my thinking now, she is an incredibly smart woman who could handle anything thrown at her. Kinda like my parents and I did way back in the day.

Only you can decide what to do and how to do it. I am a big fan of clinical trials. I use to whine and complain about the fact there was no cure that was promised from day one. Reality in my mind, can only find a cure if people are willing to sign up for trials. And while most are for making the day to day stuff easier. I have done stem cell studies and of course my children for TrialNet. But again, very personal.

Good luck and hang in there. My feel is that parents of type 1 children are God’s gift to us!

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Hello, like you I was diagnosed older I was 22 living in Boston having the time of my life. I didn’t know what diabetes was when I was hospitalized. Now it’s been awhile I’m 47 now but when I went to the Joslin I thought they told us 1 T1d parent the kid has a 5% chance and with both parents it goes to 10%. Please don’t rip me apart it’s been awhile but that’s always stuck with me. They also told us it usually skips a generation, no sure on that.

All I can say is when my son was younger he was normal weight then in high school he played football and blew up too 280 by 16. Obviously for his height of 5’11 that’s to much and he didn’t feel good about himself and literally to this day works out extremely hard. His weight now is 157lbs and he is 21 and healthy healthy.

I never thought about it I guess, pretty ignorant of me I just never thought the chances were high his pancreas and immune system would have the same issue, it’s different than type 2. I can almost remember signs of me going low as a teenager and my eye sight going blurry but would drink so much Mountain Dew it probably fixed the low, who knows.

I don’t even know how any of this relates scientifically but I’m not one or a doctor just a father that let his kid live without putting fears in his head. even when he was obese I never thought of him getting type 1, I would say lay off the soda it’s not good at the rate your drinking it and thought of type 2 when he got older but he is a health conscience adult now, also when he stopped drinking diet soda, that’s only soda we had at the time he lost 30lbs.

I would just say do what your doing, teach healthy eating, don’t buy processed crap food and implement exercise or some kind of sports, just get the body moving.

This is a tough one and I won’t lie and say you didn’t have me thinking guilty thoughts of what if something happens, I never even thought of that seriously and he was a planned child. Best of everything to your family, my advice is just live life unless you see or they feel something that looks concerning.

I see your point with the testing but if your symptoms were anything like mine they came on fast and feverishly, I went from fine one day to drinking 3 gallons of water and peeing every 5 minutes, ya’ll know how it is. I’m sure all the testing in the world can tell you some good chances but we have no control over something like this, I mean real control like I’m not going to touch the hot oven control. We have resources to help but like so many others have said a real crap shoot. That stress cannot be good for you. Best of everything to you and the family

Edit/ I just remembered obviously kids get physicals and blood work, we just went by that information and he was fine. But in 2020 I’m sure there are things they are doing that is amazing, I’m definitely behind the 8 ball on all things diabetes. Just related to you as a dad.

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Have you looked into trial that try to avert Type 1?

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Very interesting discussion. I was diagnosed with T1 also in graduate school when I was in my late 20s, with no known family member who ever had the disease.

Now I have a three-year-old and before I got pregnant we researched a lot about the probabilities of a child of a T1 parent to also be diabetic. As others have said above, it is for some (yet unclear reason) higher if the father has the condition, which might explain your heightened worry. I worry too for my child, but not on a daily basis and more as part of all the general “what does life hold for this little being who is my heart”? So I think to your third question – there is no way to completely remove the thought/worry, but I assure you that even if diabetes was not a factor in your family, any number of other things would have worried you the same way. It is simply a part of being a parent, and probably for the better in the grand scheme of things. But your job as a parent means you also don’t want it to become paralyzing for you or a burden for your child. I know, easier said than done.

On TrialNet – I am a big believer in participating in research in general for the sake of expanding knowledge (and took part in a clinical study of a medicine supposed to preserve beta-cell function in newly diagnosed T1s when my condition first presented which was an amazing educational experience), so actually signed up my child soon after she was born even though she had to be 2.5 to even qualify for the screening. Yet, I still have the packet and have not actually gone for her blood draw for it. (Obviously the current COVID conditions are part of what made this a lower priority.) I do go back and forth myself (my spouse is fine with whatever choice I make) and some part of me wonders whether it should be a choice she makes herself when she is older. I might still go with that approach, since in general as a parent I try to respect her as an individual and give her the appropriate level of autonomy. In all honesty, I am also not sure that I am mentally prepared for a result where she tests positive for the anti-bodies. But for some people knowing might be more comforting…

FWIW, I have also never tested my child’s BG. I do believe that I am well aware of the signs and that I will catch any that she might start exhibiting while young. (And there has been more than a single time when I have wondered “is she drinking a lot of water today?”)

So probably my answer contains nothing particularly helpful to you, but I do want to thank you for starting this thread where we can read the experiences of T1s with grown children. It is always useful to get that kind of perspective.

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I’ve tested my daughter. She is 16. I’ve seen a few high ones over the years and it freaks me out. However her doctor told me that it’s not that significant for a kid to spike sugars. The fasting glucose and a1c are what really matter.
However she had a 160 about a year ago.
Still her labs are always normal.
I was diagnosed at 21. Rapid onset after a bad chest cold, that hung on for weeks.
I think we are best to just keep our eyes open for the possibility, but not worry too much.
I really want Tidy bowl to come up with a reactive color, so when you see it go from blue to say, purple, you know there’s a problem.
I pitched this idea to them years ago and they got back to me 3 months later and said it will cost too much. At least they considered it.

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I’m also a Type 1 father. I had my daughter tested once for autoantibodies and she was negative. I somewhat guiltily realize that I should have her tested again. I can’t remember what the age is, but there’s an age at which, if you haven’t shown autoantibodies, then it’s unlikely you ever will.
My understanding is that there are actions you can take that either decrease the likelihood of your child every developing diabetes or delaying their getting it. I had an endocrinologist who I liked a lot who firmly believed that you could stop or delay the development of diabetes if you had the antibodies but had not developed the disease. I’m in no position to evaluate whether that’s true – he was a good endocrinologist but he might have been wrong about that – but it certainly seems worth trying to me.
In fact, I now realize that I should get my daughter tested again. I haven’t because I liked the first result and didn’t want to think about it but closing one’s eyes to something is probably never a good idea. (I should know, I do it a lot!)