Handing over diabetes management to your child

I was talking to my mother about my new family on TuDiabetes and how cool it would have been to have something like this around when I was a kid. We got to talking about what it was like for her to have a child with diabetes. (I’m 30 years old, diagnosed at age 2).

I asked her what the scariest thing about dealing with it was and I was shocked to learn that it was not the highs or lows or all the myriad of things that can go wrong. She found the scariest thing was handing over my diabetes management to me. Having to let go and trust that I could and would take care of myself and do the right thing.

So I was wondering, all you parents a couple of things:-

  1. What’s the scariest thing about having a diabetic child for you?
  2. How have you or how will you, hand over management of your childs diabetes to them?

Would love to know your thoughts….

Thank you Bec for bringing this topic out.
As pediatric endo I love to involve the children from day one whatever their age is in sharing the task of looking after themselves,the youngest is Raed,3y who can prepare his finger and ask his mother to check his BG,he knows what food he should not eat without asking his Mumy first.
There are some mothers who would not trust their children to take over for long time,some are 12-13y and still Mums give the injections.Some mothers leave it completely to their very immature children who usually end up not controlled and admitted in DkA.
Tell me Bec at what age you have been involved in sharing the care of your diabetes,and at what age you took over completely your care?
Have you been totally responsible by then?

Hi Bec, I’m a mother of a son 13 who is diabetic for 6,5 years now. I let him take over steadily - I found that he sometimes is too irresponsible to do everthing- He do most of his care by himself but I must have a constant eye him. “When last did you check you BG?” “Did you bolus?” Since being on the pump he sometimes lives as if nothing is wrong with him and doesn’t test or bolus… I still help him change his infusion and resevoir.

The scariest thing for me is letting go - I’m scared to let him go to sleep overs. They normally play very active during the day and when he is so active his bg drops during the night. My greatest fear is for him not waking up while having a hypo and I’m wasn’t there to check. He went away last week for 3 days with his older sister for the first time since diagnoses without me of my husband present.

I also hate the fact that other people doesn’t understand his moodswings. In particular school friends and teachers. I would like to be there for him every day of his life to keep him save, to comfort him, to keep the bad things from him. But then how would he be able to grow up strong, independent and wise?

I always wonder - I’m doing al the research about this condition and I keep myself up to date with everything, will he also do it?

At what age did your mom gave it over to you?

Well I think us mothers worry ourselves sick about all our children - it is, I suppose a natural instinct!!. My oldest daughter is going for 3rd year university and my second is going to study next year for the first time. I constantly worry about them - their safety, health and other issues. But I suppose I’ll survive like millions of other mothers before me!! So next year it’s only my diabetic child with me and my husband at home - shame!!!

For me its as follows (we are newly diagnosed)

  1. The scarriest thing for me right now is the “what if’s” What if she passes out and I am not there, and no one around knows what to do? I could go on, but all of you have had these same what ifs.
  2. We manage her diabetes together right now (I help count, she administer and pokes). I am sure that we will for a while. She is only 14, that gives us at least 4 yeas before she is 18 and will more than likely go off to college. It will scare the wits out of me for her to leave and be that far away now, but I know that in order for her to make it in life she will probably have to leave our area. I will just have to trust that she knows what will happen if she doesn’t take care of herself. (My Step grandmother (god bless her soul) was diabetic and lost her eye, had heart problems and died from breast cancer). All great examples on why to take care of herself now.

My 19 year old daughter is now in her 2nd year at college in an other city. Letting her go was the scariest thing of all. However, she has 3 roommates who understand and don’t mind me calling them when I can’t reach my daughter. She and I have a system where she texts me every morning when she gets up so I know she is safe. Works really well and is not a big deal for her. After nearly dying twice this summer from morning lows, (at home, not at college), it is a safety blanket that we both appreciate.
Your son has to accept responsibility for his health - begin right now - don’t wait for him to leave - and withdraw your help. Of course he will make errors, but that is the way one learns. Best of luck.

I am not a parent, but a full-time caregiver during the week, so here goes. Scariest part are blood sugars that have no ryme or reason, either unexplained lows, despite frequent basal testing, especially in previously “safe” time periods (we do have to sleep at some time during the night); or highs due to growth spurts that don’t seem to respond to insulin increases. Eventually, they do respond, but you really can’t double a dose right off the bat. We are this week giving more than double her dose in the evening time period. So many evenings of highs while you are adjusting, then the drop when growth spurth subsides. She is only 11, so haven’t handed over diabetes management in total. She knows how to adjust for carbs, look up carbs on packages, carbs for certain fast foods, correct high blood sugar, bolus through pump and add temp basals while away from us and to keep in touch by cell. She does not know carb counts of items without looking them up for most foods and up until now not really interested in memorizing. We will work on that this summer. As far as basal/bolus adjustments, ICR, sensitivity-- don’t foresee turning that over for some time. I am curious, also, as to how parents handle that. Do they let the child do all the adjustments and supervise results? Do they do it together? I am fervently hoping that by the time she turns 16, cgms or the pumps will be able to help out with this type of analysis.

I am fervently hoping that by the time he turn 16 there’s a cure!!! :slight_smile:


The scariest thing for me is knowing in 2 years my daughter will be going off on her own to college. I worrie she wont test when she should or count properly. Jenn is a great kid but gets distracted easily. even now she forgets to test sometimes.
Jenn was diagnosed 3 years ago and we have always let her do her own testing, shots and what not but we alway keep a close eye on her.

Hi all, fairly new here but here is our story…
Our daughter was first diagnosed by a Ped Endo in Sept 08 with Hypothyroid. Her Ped Endo explained it to her and addressed her more than addressing us during the first visit. He explained the condition to where she could understand it and told her it was HER responsibility to make sure she took the little purple pill every day for the rest of her life. He also explained how she could not have soy products for at least 1 hr after taking the pill and no vitamins or minerals for at least 4hrs after, that it was best to take it first thing in the morning, and that if she did forget to take one, to make it up either later in the day when she remembered or, the next day double up.
She was then diagnosed with pre-diabetes a month and a half later, and he wanted to control it with diet and exercise in the beginning but he again drew pictures and compared her to a car and how the liver was the gas tank and the motor was her brain etc etc. He gave her her own meter (I’m Type 2 and was using mine to check her levels) and showed her how to use it, it was the same meter that I use so she sort of had the basics down. We moved to another state in Dec and that meant we had to find a new Ped Endo, which we did. Feb 6th the new Ped Endo decided that diet and exercise wasn’t enough and added Metformin. She too explained everything to our daughter in detail and set us up with a diabetes educator and a dietitian. Long story short, at 7yrs old Laura takes her own BG readings, takes her medication on her own and, minus a few slip ups on diet does really well. She is considered a Double Diabetic now, Type 2 leading to Type 1, and was also recently diagnosed with Addison’s Disease, she takes 11 pills a day including those for these 3 issues and 2 for allergies and a multivitamin as well. She has severe autoimmune failure which has caused every one of these conditions and therefore has to be tested constantly, she even knows exactly where they need to draw blood from on her for the various blood tests and points each site out and knows which was the last site used etc. I am very proud of her but if/when she gets to the point of full Type 1 and needs insulin injections I do feel for awhile I will be giving the shots to her and work her gradually into doing it herself when she is more comfortable about using needles, that right now is her main fear is having to go on shots at some point.

i have four children, three of them are type 1. the oldest is 18 and firmly has his own health in his hands. he has not done the best at times, but i know that he has to take it on. he is doing very well at present. he was diagnosed at 3 years 3 months, and was involved in his own regimen from a young age. he is also the most even keel of all of my children, the next, a 14 year old boy, is not so even tempered. he was diagnosed at 13 years old, so it is not so “old hat” to him. it is scary to me to see his take this one, he tends to be an innovator, which is not a good things with diabetes… then comes my non diabetic, and my daughter is now 8. i have time with her, to prepare her according to what i learn with these last two. all of this is not the scariest things in my mind. and i am saying this here, but i would not tell them this until much later. the scariest thing to me, is the idea of passing this gene on. i am very unsure of how face that one. in the end it is not my decision to make, i know. but i have to educate as best as i can about what i think about having children and the idea of giving this to another. it is a hard thought. i love my children, and i certainly do not in any way regret having them… but would i have if i had known that they would likely be come diabetics? i am also type one, as was my father and my two brothers…

Well… we will be glad to turn over management of D to DN, who is 12, because by the time she is 18, there will probably be an artificial pancreas, LOL. Seriously, she does all that is expected, can do the temp basals, bolus for carbs and test blood sugars now, but even we have a very hard time with adjusting her basals, readjusting ICR, because at this time in her life, she is using more insulin than she ever will, and her basals change almost daily. So it is asking too much for her to take this over. Also, since we test at least twice and often more times during the night, it would not be possible for her to do the same as a young adult. She will need her rest. It will be very scary turning D management completely over to her, but she is now learning to adjust to Dexcom cgms and responding to alerts. I have to pin my hopes on technology, and hope things are not as difficult for her five or seven years from now, than it is for all the young adults here.

I was diagnosed at age 8, and I pretty much had the running of my diabetes ever since I was diagnosed. Nobody ever gave me shots or told me how much to give myself – it was on me. (That’s not to say my parents weren’t supportive. They took what little sugar we had out of the house and told me to test when I was low. They also worried constantly – I just didn’t realize it. I never thought of it as any big deal, because my family treated it like no big deal.) Of course, these days, I’m a mess of a diabetic, but I’m still of the opinion that diabetic kids past the age of 10 or so should have most of or all of the control of their diabetes, since it’s their disease, and their parents won’t be around forever. Plus, I was given the freedom to do things that other kids my age did, without worrying about how it would affect my diabetes. I spent my junior year of high school as a foreign exchange student, I went to college several thousand miles away. When I was older, I realized how much my parents worried. But I didn’t realize it, and I think that’s one of the best gifts they ever gave me. If I’d had to talk to them every day or if I’d had to discuss how much insulin to give myself, I think I would have gotten really sick of the whole thing.

I am the diabetic and I can’t imagine my 13 year old having to deal with it. But my parents never took control when I was dxd at 11. THe Dr appt’s everything was mine except writing the checks. They didn’t even come with to most of my appt’s. But, the clinic was about a block away and they both worked. I didn’t think anything of it at the time, but now it blows my mind. Like I said I cannot imagine my 13 year old handling it. But my 10 year old probably could, depends on the child I guess.

I heart goes out to all of you parents having to watch your children deal with this. And, I wish your children could have been spared. But, if I were in your shoes, and I know I am not, I would try to error on the side of giving them control of more earlier. THey have a lot to worry about and control and adjust, but it has a learning curve. I would want to know they are in control before they leave the house for college. That takes time. More than once on this site I have read and said it takes time to learn this disease and what it does to you. I would want them to be in firm control before high school graduation. I was; but, I think only because of the control given to me very early.

Always fervently hoping for a cure, but I just don’t see it in four years, at least not a cure for those unless they are newly diagnosed. Would settle for an artificial pancreas of some sort. There is no way she is going to be able to keep up with basal adjustments, adjustments for growth hormones, etc. and get a decent night’s sleep. I also don’t see her logging and charting her numbers like we do, or spending the time we do on analysis. So I would hope these parts of D managment would be more automatic in the future.

Expert opinion may differ, and it has differed in the 60s, 70s and 80s, but there are various studies that suggest that turning over management of Type 1 to a young child or even a teenager leads to burnout. As far as allowing an eight year old to determine dosing “it was on me”, no endo has ever suggested that to us. And if they had, we would dismiss it. We program her pump, basals, ICRs and adjustments and it is quite a challenge for us to keep her in range. I don’t think she would have a prayer of getting the adjustments correct during puberty, because they change almost daily, minimum, twice weekly. Our goal is to keep her blood sugars as close to a non-diabetic range as possible. As I said, VERY difficult for us to do, don’t think a 12 year old would have much luck with it. She does enter her carbs into the pump, bolus through the pump and implement temp basals. And I think that is very age appropriate. When she is sixteen, seventeen, that is when we will have to let go and I can only hope there is an artificial pancreas ready or a pump that can do some analysis of basal patterns to help her. She has the same amount of freedom and can do anything her classmates can do, though I don’t think we would like to send her abroad for high school. Other than that, her freedom is not restricted.

I agree with firm control before graduation. I strongly disagree with turning over the whole shebang to a young child. I don’t think this way of D management is practiced anymore. Very old school. And the demands were fewer; no doubt the endo was adjusting insulin except for insulin-to-carb ratios and minor adjustments to the basals. A lot of analysis is now necessary, both from cgms data and/or pump. Most kids do bolus through the pump, can do corrections for highs through the pump, take care of their own blood sugar checks, etc. I believe most parents program the child’s pump and most parents decide how much insulin to give, both bolus and basal.

The scariest thing is sending her to school. Alexis was just diagnosed. She is 7. We found out the last week of school. Well…I spoke to the teacher and she said she would handle it. I told her the signs of Alexis’s low blood sugar. When I got to school for her lunch period. She was 40. And, the teacher just left to go to lunch. None of the teachers on duty were aware. So…I am nervous what the new school year will bring. I will not be able to go to her school this year because my job has transferred me to a new location, which is quite a bit further away.

I am trying to hand the management over to her now. She has tested her blood sugar twice, so far. I was told not to force her. But, I feel like I have to with school getting ready to start.

My son Caleb is 6 and has been living with diabetes for two and a half years.

Over this time, he slowly takes on more responsibility, although I am still doing most of it. Because he goes to school, I like him to be educated on certain things. He can check his own sugar and does so at school, but at home either he or I do it - I don’t want this to be a huge burden on his - we are a team. He administers lots of his insulin with his pump (at school he does his own bolus’ with supervision), but again not exclusively at home - don’t want to burn him out.

I’m trying to gradually get him more aware about how to treat lows and when to correct. He does not have full responsibility for this, but I just want him to get used to the theory behind it. We also talk about carb counts, but again, just to orient him and not give him full responsibility. I like to let him lead. If I give him the foundation, he will show me when he is ready to take on more and I will let him, but I don’t want to force it on him or leave him completely in the dark.

As far as the hardest thing - it’s hands down leaving him in the care of other people. Sending him to school every day is completely nerve-wracking and I often feel like he makes it home ok out of luck and luck alone. We had a rough year with him in half day K this past year - lots of bumps, but I have met with the principal and district nurse to review the year’s events and make it clear that we need a better plan for next year. They have both been receptive and plans are in the works for change.

Thanks for the inquiry. I always like to hear from adults with D who have gone through what Caleb has gone through. It helps me be sensitive to his feelings as I can only really guess what he is feeling and going through on a day to day basis.