Hi, I am new to this page and new to type 1 diabetes so any advice would be greatly appreciated. My 4 year old was diagnosed at the end of June and as you all know it’s a complete lifestyle change. Can I ask how families with young children deal with it and when they learn to accept it and things become easier? We currently do 6 injections a day and lots of BG readings, we are waiting to get a Medtronic pump.Really hoping this will help as my daughter is so fed up and completely passed it. Her levels are all over the place as we are still in the honeymoon phase and she tends to lash out (particularly when she’s low)
Any advice is welcome.
Hi, Cathy @Mollydolly, and welcome to TypeOneNation!
I’m so sorry to hear about your little girl’s diagnosis. Our daughter was diagnosed at 6 — which I am certain was easier than 4, if only because 4 is just a really tough age. In all seriousness, your life will likely get easier when she’s 5 for normal developmental reasons alone.
As for the diabetes stuff: you can do this. You can. It’s overwhelming at first — there is SO much to learn! — and yes, the so-called “honeymoon” can be a real nightmare, especially as it’s ending. But it will get easier, I promise.
Other than needing an empathetic, knowledgeable, and helpful community (which you have found, my friend: the other posters here are the most awesome folks living with T1D anywhere, and I mean that), what kinds of questions or concerns do you have?
Hang in there, and know you’re not alone.
Hi, thank you so much for replying to my post.
It’s amazing to read through all the posts as the information is so helpful. I feel we still have so much to learn as is still really early days.
Can I ask how you knew when the honeymoon period had ended? And how long did it take for this to happen?
Did your little one go on to a pump or do you still use pens and how do you/ she find it?
At what age were you able to leave her at clubs, swim lessons etc. I feel I’m the only mummy hanging about at dance class etc and my little one is very much aware she’s different as no one else has a parent there. I feel for her as don’t want to take her independence away, it’s only half an hour but I still feel for her as she isn’t getting the experience her friends are. Also don’t want to get to the stage she doesn’t want me to leave her as she has turned very clingy and shy around new people. Think the last month has just been extremely overwhelming for her and in some ways she is a completely different child which is really sad to see.
It’s so nice to hear that life gets easier, we are starting our pump training in 2 weeks so I’m really hoping this will be a game changer? as we are currently up most nights injecting as poor thing seems to be high so will be good to give insulin without waking her with a pen.
Thanks again for your reply!
Hi @Mollydolly and welcome to the forum. I’m not a parent but was diagnosed when I was 3 years old - I’m in my early 60s now. Knowledge was very different way back then and I took 1 shot a day until I was out of college - that’s when the first home BG meters vegans available too. With all the knowledge we have now treatment is very different, but I do wonder about so many shots for your little one. If your daughter is not under the care of an endocrinologist who specializes in diabetes in children, you’ll want to look for one. Not all doctors understand diabetes; not all of the ones who do understand Type1; and not all of those manage it in children, whose bodies are changing. Finding a pediatric endo specializing in diabetes can help you fine tune things and hopefully reduce her injections.
The book Think Like a Pancreas is an excellent resource - the author has Type1 himself and works in the field.
Wishing you all the best - you have a big learning curve and new challenges, but you’ll find lots of support here.
Hi, thank you so much for your reply.
I will look into getting that book, really appreciate your advice. So we are currently under the paediatric diabetic team who are still working on her insulin ratios etc but she currently gets a morning/night background injection then an injection with breakfast/lunch/tea and supper then sometimes a correction injection through the night if she’s running high. It does feel a lot for a 4 year old but really hoping moving onto the Medtronic pump with stop these.
Thanks again for your reply
It occurred to me after the fact that she might be getting basal insulin twice a day, plus shots for meals etc. - I should have thought that through a bit more before posting - my apologies. Great to hear she’s got a good team - it may take a little time for things to settle in, but hang in there.
PS - some people numb the injection site with ice to make the process less painful.
@Mollydolly Hi Cathy, and Welcome to the JDRF TypeOneNation Forum! I hope that you will find some wonderful support here and know that you are not alone.
I’m not a parent of a child with diabetes and my childhood experience was many decades ago when diabetes management really didn’t exist - so we will skip that. I empathize with you and feel for your young daughter needing so many daily injections. Yes, a pump will minimize the number of pokes your daughter gets - neing 130 pump infusion sets per year as opposed to 2,00 injections. But keep in mind, that a pump by itself will not cure her BG bouncing all over the place. As you learn insulin techniques and how to set basal rates you may find keeping her BG more level will become possible - and “Correction Bolus” can be done without awakening her. Some experienced pumpers here may offer you some useful tips - my pumps  have been a real game-changer after 47 years with injections.
As was said earlier, keep asking questions - the more specific the question will assist you getting information. Of course, try finding the best professional “diabetologist” to help guide your daughter - and you.
Hi @Mollydolly welcome to Type One Nation. I wanted to address the question above directly. There are blood tests to determine when your daughter is not making any of her own insulin but the most typical way to tell is the need for injections goes up, if you are monitoring blood sugar, that’s really all you need to do. Typical honeymoon in children is 1 to 3 months.
IMO blood sugar control is not easy nor is it perfect. High or low blood sugar is not a failure on anyone’s part. It is merely a indication and it suggests the next hour course of action.
Your daughters doctor may switch the types of insulin at some point, but if you start on a pump there is only 1 kind of insulin and so in that respect there is a little simplification with pumping.
Pumps do not measure blood sugar but you can look up the different devices (continuous glucose monitoring-CGM) that work with the Medtronic or Tandem pumps to get an idea about the technology. You can’t really correct blood sugar with a pump without some blood sugar measurement so that CGM or a finger stick reading plays a big part in the game.
Please get “Think Like a Pancreas “ it will help you to quickly get the language and concepts for control. In my opinion it is very worthwhile
In a year, you will be an expert. Your very next job is to make your daughter an expert so she can do it too. We do survive this with help and time. Cheers and good luck
@joe I wanted to clarify if hour course of action was a typo - as a new T1 mom she might misinterpret if so.
Hi, thank you so much for your reply. My daughter was diagnosed at the end of June so sounds like her pancreas may stop producing soon.
I will get that book ordered as I welcome any new information, tips and advice. It’s alot to get your head around but the sooner we’re up to speed the better.
I kind of mean, “a course of action for the next hour”. My meaning is intended to spark the idea that management of T1 is taking a blood sugar reading, knowing the next thing (activity,stress,meal, sleep) and developing a very short term strategy. Then you take a new reading, and so on.
T1 is a hour-by-hour management issue, it’s sometimes a 15 minute by 15 minute issue. It is nothing like taking a pill once a day, but the overwhelming idea of constant management in perpetuity may be a lot to wrap your head around at first so yes i agree it was vague and thanks for pointing it out and the chance to elaborate.
@Mollydolly im not trying to scare you, or talk to you in 3rd person, but it’s just the new deal. We all continuously monitor and continuously adjust. Being a manual pancreas becomes more routine the longer you do it.
But I am SO tired. I don"t know how much longer I can do this. My friends, my family can’t understand. and I am a whiney bitch.
Hi @sgwilson . I’m sorry for your frustration. You’re in good company here when you say friends and family don’t understand - those who understand best are the ones who live it. I hope you find some of the support you need here, but professional counseling is often helpful, especially when someone says “I don’t know how much longer I can do this.”
Under the Resources link Type 1 Diabetes On-Call Help & Community Support - JDRF there are some options you can look into. I hope you’ll check it out. Please take care.
PS - you might start a new topic so people can find it easily and help address your concerns.
What helped us is listening to Juice Box Podcast about Diabetes. You’ll find most all answers to any questions you have Juicebox Podcast — JUICEBOX PODCAST
Also keep an eye on viacyte. I am hoping in 5-10 years this pouch with beta cells will be a reality ViaCyte’s Product Candidates for Diabetes - YouTube
I honestly dont know how being diagnosed affected my mom. I was 8 and we were have financial problems. My dad went into denial and didn’t do anything and never came to my appointments for a year and a half. My life flipped. I wasn’t happy me anymore. I let it take the best of me and i let it defeat me. I wish i had people where i was from that had it so they could help me and give me advice. but living in a small town and being the only child that had diabetes, it was hard. had no guidance. then as years went by, more children became diagnosed. even one of my family members that is going into first grade. Over time i was able to help then, do the things i never got. At least they can do better than i ever did.
Welcome I’m sorry you are a part of the group but this group is very strong and a good resource. My daughter is 9 diagnosed at 3 so I know your frustration. My daughter honeymooned for a year with no insulin needed at all then slowly she required it . I’m not going to lie it’s not an easy life to live but you will get adjusted and so will your child. It’s like a new normal. When I think back 6 years ago and where we are now I didnt think we would’ve adjusted but we have and so will you. This group has helped me so much throughout the years so definitely reach out when you are feeling like you’re ready to scream or have a question .if I could give 1 suggestion it would be always check in with your child because I’ve learned over time because they’re the ones with the condition frustrations can be brewing and they may hold it in. I always allow my daughter to vent and I try to relieve her pain.whatever she feels comfortable with as long as it’s not too far left I try to accommodate her . She says it makes it easier to deal with having diabetes . I try to make it as fun as I can. There are a couple stores on etsy that have meter ,cgm and pump decal stickers so to make her meter pretty she has sparkly pink decals. There is a lady that custom sews kids and adult supply cases so my daughter has a super girly case with her supplies in it so when she goes to school it doesnt look so obvious and her friends love it which in turn makes her feel special
Hi, thank you so much for your reply.
Do you mind me asking what age your daughter was when she started to understand what was going on and become more accepting? I find it so hard with our little one being 4 and having very little understanding. In her world she feels well so doesn’t want the injections which I fully get.
Wow, a year so the honeymoon period lasted a while for you guys, did you get very obvious indicators when it finished. Every time we have a few really high numbers I think “is this it” but then things balance out again. It definitely seems a juggling act at the minute as balancing her numbers is a nightmare, we are moving to a Medtronic pump in a week so I’m hoping this will help.
Thank you for the advice! It’s so nice hearing from people who fully understand what your going through.
It took about a a couple years before she understood and accepted and I think that’s because she was so young and so is your child. At initial diagnosis she was in the hospital for 3 days she had at the most had a cold before this so that hospital situation was so traumatizing for her. At that young of an age I would just reiterate to her that I have to give her a shot to keep her out of the hospital and that was explanation enough for her. Accepting it didnt come until she understood more what diabetes was but I explained it little by little. I didnt want to scare the living daylight out of her so I explained it on a level she would understand . She understood her pancreas isnt that strong so she needs help to keep her healthy. As shes gotten older she fully understands now . I always included her so at 3 I was teaching her how to check her sugar so that within a year she was doing it herself. Insulin shots she gives them to herself now but she doesnt want to so when shes home I do it but when I’m not around she does it. I definitely remember seeing high numbers during honeymoon and thinking this is it and it would go back to normal. I knew when her numbers were increasing consistently and not going down without insulin that we were coming out.
Honestly, it’s the not-knowing that’s hardest, I think. Our daughter’s honeymoon was about a year, too, but she always needed some insulin — at first, very little, but never none. And IDK if there’s an official set of criteria for declaring the honeymoon officially over, but I’m calling it over when it was clear she wasn’t getting any help from her own beta cells anymore. If that’s not the right end-point, someone who knows please correct me.
Anyway, the point was that I didn’t know enough to know, at first, that actually we had it pretty “easy” keeping her in range. It certainly didn’t feel easy at the time! But gradually, she started needing more and more insulin, and yet she’d also randomly go low, presumably because her poor beta cells had rallied, and were “helping” again. I remember reaching out to this Forum when I first started seeing 40s and 400s in the same week. Those were numbers we had basically never seen before, and it was incredibly stressful.
Her endo helped us adjust her dosing as best as possible, and we got through it. But when the honeymoon is ending, boy, it’s really ending. I feel for you.
Hang on as best you can, do what you can do, and definitely reach out anytime. We get it, and we’re here for you.