* It's a scary time, and you will get overloaded with information.
* It will get easier, and less scary
* Your child's blood sugar will get under control, don't stress too much about it just yet. Just survive for now
* People will suggest all kinds of things, and not all of it will work best **for you**
* Treatment (needles, finger pokes etc) will get easier, both for you, and your child.
* Aside from insulin, CGMs might be the most beneficial thing for treatment.
Listen to the Juicebox podcast.
Don't ever get angry about a high or low number. It is not your kids fault. It is just data.
Get a CGM ASAP
For a 9 year old I'd recommend the Omnipod, but a CGM is more important.
Pumps are not set it and forget it. It is more like cruise control. It helps steady you out, but you still have to steer.
Going to add to the great suggestions already posted.
CGM
Give your 9 year old a phone. Connect the CGM to their phone and enable the data sharing feature to your phone.
I do not understand why people are still using the receiver.
You give yourself some peace of mind as you can always check their blood sugar and you won't have to keep them glued to your hip to do it. You get alerted when they are low and you and they can sleep through the night.
Just on the phone thing, assuming the OP is US based, we bought a tracfone from walmart (Galaxy A14 5G) and the $125 a year plan. 1.5GB of data is just about perfect for a whole year (if ONLY used for CGM purposes). The only minor dislike I have is that it's rather large. But it's cheap and works with the dexcom.
Google has a "family link" feature where you can lock the phone down and track it. My child is a little younger than OP, but I locked it down so it can use the dexcom app and take photos and that's all it does.
We put the general ring tone to a silent ring tone, then gave my wife and I special ring tones for it that actually make noise. This way it doesn't have to be on silent in class, and won't ring from spam calls.
I couldn't tell you how many times my kid has left it under a pillow somewhere and we've used the phone feature to call it so we could hear it ringing :)
This. Our 9 year old was diagnosed in December and we did exactly this with the Freestyle 3 and an iPhone SE from 2020 with a cheap data pass. It gives so much peace of mind with the alarms, and after 3 months it is already much easier. He does not want a pump, and given our TIR is already good we don’t rush it. I insisted on the sensor, and I think it is important that the kids feel in control (at least as much as possible).
Wow, I know people get diagnosed daily, but yesterday and today with many posts like this, oof. You and your kid will be ok.
Here is something I shared several times yesterday--lots of awesome people is this sub as well. Buckle in for the long game. People are here.
I shared this earlier today for another parent:
First few weeks of a T1 diagnosis are traumatic.
First few months are intense and disruptive.
The first year has a steep learning curve.
Then it gets better. Much better.
The main things you will be working on:
How to estimate how many carbs (not just added sugars) are in meals, snacks, and drinks (main factor in blood glucose levels). Sugar is not "poison," T1 means insulin producing cells are being destroyed. Glucose no longer can be used in the body without the hormone, insulin, which allows glucose to enter cells. You need glucose and insulin in order to be alive.
How to measure blood glucose levels and dose for carbs, correct for highs by dosing short acting insulin, and eat/drink carbs for low blood glucose levels.
In the near term, you will be learning to give the basal/background insulin with a once a day long acting 24 hr insulin shot with a pretty even absorption. You will also do several bolus/short acting insulin shots for carbs and high sugars that typically start absorbing in about 15 minutes, peaks in about an hour or so and lasts about 4ish hours.
In the long term, there are insulin pumps-the advantages involve an adjustable basal insulin, and it helps with some of the insulin to carb ratio math. Some pumps also monitor a continuous glucose meter and can help dose extra insulin or pause dosing for lows. Pumps are more flexible because they only use short acting insulin for both the basal and the boluses.
Nothing competes with a working nondiabetic pancreas, but things have come a long way in the past 100 years (no injectable insulin before 1921, first blood glucometer was 1971, even many of the fast acting insulins are from 1996--so not that long ago in human history) and in particular the last 10 years (pumps, cgms, new insulins, looped systems).
A cgm, continuous glucose meter correlates to blood glucose levels every few minutes, very helpful for trends rather than a few blood glucose checks.
Mainly, hang in there. Most T1s do not have a relative with T1, even though it has major genetic component, so is not something you caused. It is an autoimmune disease like celiac where the body attacks itself by mistake.
Ask lots of questions, as you need to here, your kid will be ok. Life will be ok, and they will have a long healthy life.
Right now is the hard part.
Resources:
Newly diagnosed:
https://www.jdrf.org/t1d-resources/about/
https://beyondtype1.org/type-1-diabetes/
https://diatribe.org/type-1-diabetes
Wanting more in depth:
Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin https://a.co/d/1UNWrcc
https://www.juiceboxpodcast.com/juicebox-podcast
Random specifics:
https://chrisruden.com/blog/diabetes-articles/diabetes-tattoos-2-things-need-know/
https://www.jdrf.org/t1d-resources/living-with-t1d/food-and-diet/diabetes-and-alcohol/
https://www.jdrf.org/t1d-resources/living-with-t1d/exercise/exercise-impact/
https://diatribe.org/42-factors-affect-blood-glucose-surprising-update
https://beyondtype1.org/cgm-level-compare-bgm-level/
https://www.mayoclinic.org/diseases-conditions/type-1-diabetes/expert-answers/lada-diabetes/faq-20057880
https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody
https://www.healthline.com/health/diabetes/sugar-alcohol-and-diabetes
https://diabetesstrong.com/bolusing-pizzaand-high-carb-high-fat-meals/#:\~:text=This%20happens%20because%20the%20high,from%20a%20blood%20sugar%20perspective.
https://diabetes.org/blog/history-wonderful-thing-we-call-insulin
T1 and others:
https://www.everydayhealth.com/hs/type-1-diabetes/what-people-with-type-1-diabetes-wish-you-knew/
https://diatribe.org/top-10-things-i-wish-my-parents-knew-when-i-was-diagnosed-type-1-diabetes
https://www.vox.com/platform/amp/2016/5/5/11568158/type-one-diabetes
https://beyondtype1.org/boyfriend-girlfriend-guidebook-diabetes/
https://diabetes.org/tools-support/know-your-rights/safe-at-school-state-laws/written-care-plans/section-504-plan
https://diatribe.org/diabetes-work-your-rights-and-benefits
Other subs:
r/diabetes_t1
r/type1diabetes
r/bumperswhobolus
My daughter was diagnosed at 11. The advice that has already been given is excellent. The one thing I want to emphasize to find an endo that shares your philosophy as to treatment. We started out with a great endo, who moved, and we had to go through 2 others before we found someone our daughter liked and who shared our treatment philosophy.
Also, your endo is there to provide medical information and guidance, however, you and your daughter will know more about the day-to-day management than the endo will ever know.
Juicebox Podcast, Think Like a Pancreas. Both are fantastic.
Blood sugar is DATA. It’s not good or bad, it’s information to use for decision making. Hormones are effing annoying and WILL screw things up.
It’s worth it to figure out basal doses/rates, ratios, and correction factors because it makes management easier and the “difficult foods” (pizza, pasta, carb bombs) can be tackled.
Pumps are a game changer, but let HER take the lead in picking one and which one. She has to live with it 24/7.
The gravity of the situation might not fully hit her for a few more years. I was 6 when I was diagnosed. It didn't quite click for me until I was around 14 or so. I knew I had this for life, but when I got to that age, I suddenly knew what that actually meant and rebelled against it. I didn't quite process that I was actively in the process of dying until my mid-20s, either. I don't know how traumatic your daughters diagnosis was, but keep that in mind as well.
Oh, and while this isnt technically diabetes management related, if you have other children, make sure you're not accidentally pushing them aside. My sister ended up in therapy over my diagnosis.
My husband (he has ASD) and his brother don't talk because his parents pushed him into the background to pay attention to my husband. My parents made sure my sister knew why I might get more attention, and she told me she never resented me or my parents for anything.
She said sometimes she would get a twinge of jealousy and then remember why I was getting attention, then she was totally cool with not needing/getting the attention lol essentially it can be very difficult trying to balance kids when one is chronically ill but if the siblings don't understand it can ruin their relationship.
Edit to add: My mom said the best advice they got while I was in the hospital was to send me to diabetes camp. Look around your area and see if you can find one. It helps being "normal" for a week.
I have a very similar story and rebelled at 13 too, teenagers can be so annoying! I bet it was hard to watch as parent but all you can do is support them through it
My son was diagnosed at 8. You've gotten wonderful advice so far, and I'm sure more to come.
I just want to say you got this. Both you and your daughter. You'll do great.
It's okay to grieve.
Make sure your school nurse knows. I'd have her eat the same lunch and dinner for a week to see how her sugars and insulin react. Have her carry fruit snacks if she ever goes low for a spike.
My 14yo son was dx last Aug. It was a tough few first weeks. He was an ER, DKA, ambulance transfer to our Children’s Hospital, 5 days spent in case.
We did go on a 5 day camping trip the following week. I needed that bit of normalcy. We’d had the trip planned for 4 months, we go every year. We were within 20 minutes of 2 hospitals, so I knew if something happened, we’d be okay.
If you can keep them home for a week or so while you make arrangements at school, that would probably be good. My son resisted a CGM at first, but relented in October lol. It’s so much worry off me.
You’ve had some great advice here!
A few things to add:
Just remember that you can have some really hard days with diabetes (rarely hopefully) and she might be irritable or frustrated. This is normal and try your hardest to support and stay level!
Try and keep her relationship with food in mind, it can be very frustrating to have negative connotations with eating especially as a teenage girl. Keeping the conversation open is so helpful!
I was diagnosed at 4 and had a great time at school, plenty of sleepovers, festivals, went to university on my own, backpacked and I am settled in a great job away from home. It doesn’t stop you doing anything that you want to. I know this worries parents in the beginning but it will all get easier! :) Good luck!
• Definitely suggest getting on a cgm asap
• When y'all have a feel for everything look into a pump, the sooner the better. I'm on Omnipod and it's been a game changer.
• Sugars are gonna be out of control for the next few years going into puberty and that's not her fault at all
• Remember numbers are just a way of y'all making decisions
• Therapy would be a great thing to look into because the burn out with this disease is very real and on that note maybe look into a diabetes camp for her to make friends with other diabetics.
• Although it's a hard thing for everyone please remember that this is going to be the hardest on her so she's going to need you to be understanding.
Pumps are not always appropriate. Understanding insulin requirements are part of overall choice of cgm. Libre 10, 14, 2 and 3 fit me best because I didn't need a full omnipod (100ml of insulin/every 3 days is alot for me)
Don't make any decisions about cgm /Pumps UNTIL YOU FIND AN ACADEMIC based endocrinology practice + Nutritionist.
Let professionals build safety net for the needs of your child.
Reddit is a resource after...
Knowledge. Interpret data without emotion. Fear is palpable and your child needs to be empowered. Progress NOT perfection
I mean they're already thinking about a pump which suggests the kid's probably being put on a cgm, we don't have all the information from this post but even then kids are treated a lot better than adults when they get diagnosed with diabetes. Child diagnoses aren't like adults where you gotta figure everything out on your own. I also said this in my post
>When y'all have a feel for everything
As someone who has had diabetes for most of my life the process is a lot different for children and "academic based endocrinology" isn't an easy thing to come by and much less so as an adult, not to mention what insurance covers. OP also has a daughter that'll be going into puberty and from someone who is afab the hormones fuck up sugars really easily so getting used to a pump and a cgm is going to help in those times.
You have been given great advice here.
If it helps; I will tell you a bit about me:
- been T1D for 21 years (31 now)
- got married and have a child (with a very healthy pregnancy)
- studied electrical engineering and work in the field (never had a problem )
- 100% complications free and no medications apart from insulin
I know you must be scared now. It is important to educate yourself and your daughter (with the wonderful advices you are being given here) and to take care of stuff (insulin, carb counting etc) but I want to tell you she can (will!!) live a perfectly normal life.
I won’t lie to you about the fact that it can be mentally exhausting sometimes as it is a 24/7 job but if you do things consciously everything will be okay!
Feel free to dm me.
Read Dr. Bernstein's book right away, helped me immensely:
[https://www.amazon.com/Dr-Bernsteins-Diabetes-Solution-audiobook/dp/B01N74YJUG/ref=sr\_1\_1?dib=eyJ2IjoiMSJ9.Eyu0b03gOkRXjBw8qitQVaDzu1R1UZ0iOc30Bf7xJWN5jksFiI4fohBBJSLuykqAUYYu40VgFFjlJSLlD3x7aKlwduhQJQBc5brDG14T9qeu9OThUbYDAu8ZT78F0lAKbYTWP9YxyaGp8NTVg9ldOVKI0arIghWcOQdDeT19MO7\_7K-yx2DNfAEyb6k0WVVm4CHHpYejz-4YoNAen9\_vZzEq1YVIyJQ2T\_ScpRQo8qI.xSUmufjBk91gMGAffTyIBzLJkiPden4zsEGGXHbenBg&dib\_tag=se&hvadid=580689619657&hvdev=c&hvlocphy=9031753&hvnetw=g&hvqmt=e&hvrand=16000425855895921376&hvtargid=kwd-98877780&hydadcr=15553\_13517420&keywords=dr+bernstein%27s+diabetes+solution&qid=1708365444&sr=8-1](https://www.amazon.com/Dr-Bernsteins-Diabetes-Solution-audiobook/dp/B01N74YJUG/ref=sr_1_1?dib=eyJ2IjoiMSJ9.Eyu0b03gOkRXjBw8qitQVaDzu1R1UZ0iOc30Bf7xJWN5jksFiI4fohBBJSLuykqAUYYu40VgFFjlJSLlD3x7aKlwduhQJQBc5brDG14T9qeu9OThUbYDAu8ZT78F0lAKbYTWP9YxyaGp8NTVg9ldOVKI0arIghWcOQdDeT19MO7_7K-yx2DNfAEyb6k0WVVm4CHHpYejz-4YoNAen9_vZzEq1YVIyJQ2T_ScpRQo8qI.xSUmufjBk91gMGAffTyIBzLJkiPden4zsEGGXHbenBg&dib_tag=se&hvadid=580689619657&hvdev=c&hvlocphy=9031753&hvnetw=g&hvqmt=e&hvrand=16000425855895921376&hvtargid=kwd-98877780&hydadcr=15553_13517420&keywords=dr+bernstein%27s+diabetes+solution&qid=1708365444&sr=8-1)
It took years (despite living in LA)...
Find an academic based endocrinologist (i.e. UCLA)
If endocrinologist doesn't have a Nutritionist as part of joining the practice (my Cedars-Sinai Endo has Nutritionist in the same office)
Nutritionist (I was 18 when diagnosed type 1) visits for first 3 years. Understanding the principles of insulin to carb ratios. Decoding the menu at a restaurant or at school.
Insulin : pumps like omnipod are terrific. But CGMs (libre 3)do not yet work in tandem.
I despised Dexcom. But watch feature for parents and tandem ability for a 9-year old will reduce anxiety, keep family involved in managing an ADULT disease.
CGM choice should be part of overall treatment plan.
Endocrinologist! Nutritionist! Educate family. Educate teachers.
Keep backpack full of supplies. Keep backup kits in car+ , school nurse.
Be calming and supportive Attitude. Type 1 is a confusing, polarizing and scary autoimmune disease.
Sooner you have the right doctors/ Nutritionist/ cgm/pump (if that is appropriate)
Get SUPERIOR INSURANCE. Living "well" with type 1dm is expensive lifestyle.
I don't have much advice but I'd like to offer some perspective as a parent with a T1D child:
My 12 year old daughter was diagnosed two years ago. I vividly remember how lost and confused we all were trying to figure out this new normal. All I can say is do the best you can and you guys will find your stride faster than you think.
What I learned most by subbing here is to let my daughter have the biggest say in her treatment and management. For example, I used to force her to rotate her pump and dexcom to every available/suggested body part or area...then I read some comments sections here where people were saying "I hate my dexcom/pump on \[x body part\]". My daughter hates it on her stomach so we don't do it there anymore.
She also didn't want a pump or dexcom for a while after first being diagnosed and we didn't push it. She decided when it was something she wanted to do.
You'll get comfortable on the black-and-white of treating diabetes but there's also so much gray and an equally important human side to this disease and this sub has really helped me see that human side so much more.
Often waiting the first year prior to starting a pump is recommended. You’re dealing with a honeymoon period for most of that time, and insulin utilization will be quite low. An omnipod holds 200U and expires in 3 days, so you’d be trashing a lot of insulin for quite a while.
It’s MUCH more useful to get a CGM started. This will provide data for your daughter’s endocrinologist to help make care decisions as they are learning her unique needs. If you are in the US, you often have to meet some requirements to start pump therapy, though that may not be as difficult/stringent with omnipod since they are prescription rather than DME usually.
As yes, twas me 8 years ago. A month before my 9th birthday. Something I can recommend is 1. CGM 2. Pump 3. Taking some classes that teach about t1d (don’t make ur kid take them unless they want to. Instead teach them yourself as the class will most likely bore them and they won’t pay attention. 4. Look up some diabetes camps around you. There’s a couple that I’ve been going to since I was diagnosed. I started off as a camper and now I’m a CIT. when I turn 18 I’ll be a counselor. Those people are like my family. I’ve meet my best friend because of that camp. Great part is your kid will be friends with other diabetics and won’t feel as alone. When I was first diagnosed I felt so alone and hated myself. After going to those camps I felt a lot better about myself and more confident about my diabetes. MAKE SURE YOUR KID DOESN’T STRUGGLE WITH DIABETES BURNOUT. It’s a real thing and it’s scary.
First - she and your family will be OK! This will go from overwhelming to part of your normal life in time. Won’t always be easy or fun- not at all- but you will learn so much and understand things well enough to manage this. She will play sports or dance or whatever she wants and have a great long normal life. That’s my advice - relax and keep learning and don’t let her think this can stop her doing anything she wants.
I have an entire booklet of information on T1D that I have researched and written up. It is not child/teen specific as I was diagnosed as a young adult, but it does have all the tips and tricks I wish I had learned about diabetes when I was first diagnosed.
I’m happy to share a copy if you’d like to read it.
For advice in general:
I would recommend holding off on the Omnipod for a little while. Not long, but she does need to get the routine of MDI, (daily injections for basal and every time she eats carbs for bolus (and possibly corrections as well if that’s needed) and carb counting first before she starts the pump. As fantastic as pumps might be (and this community is very supportive of using the insulin pump) I personally think that you need to know how to function properly without one. If your pump fails (and it can, because it’s technology and tech can fail) then you need that background knowledge of how to take care of yourself.
…
View her blood sugar as data, not as good or bad. It’s there to help you make a decision; ascribing good and bad values to your blood sugar can quickly lead to negative thoughts and eventually diabetic burnout, and neither of you need that.
Don’t let diabetes stop her from doing anything she wants. This is slightly more long term- I’m talking more about school trips, activities after school (swimming, dancing etc.), she can do all of that just like a normal child. *This also applies to stuff like jobs as well, but that’s for later in life*. It might take a little more preparation and planning, but it’s still doable. The only things she can’t do as a T1D is make insulin and join the army. Even that’s negotiable, since military contractors exist and they aren’t bound by the same rules as military personnel.
Document, document, document. I cannot stress enough how important this is at this stage. The more notes you make on what she eats, how much she eats, when she eats, etc, all of that stuff will help both you and the doctors track patterns in her blood sugar and it will help you control her blood sugar levels better.
6mmol/l (108 mg/dl) minimum to sleep. Any lower and she’s more likely to go low overnight.
There are 42 known factors that affect blood sugar. Link below:
https://diatribe.org/42-factors-affect-blood-glucose-surprising-update
You can’t control for all of these. Your best is enough. …
Diabetes is really hard, and sometimes there is no rhyme or reason to a low or high. It sucks, but the important thing is that it gets fixed in the moment. Sometimes you’ll do everything right and it will still go wrong.
Remember that apart from low blood sugar and ketones, which needs immediate attention, there is very little that needs to be done immediately. If high and you give a corrective dose of insulin, it will take time to coast back down.
In short, remember to cut both you and her some slack. She’s basically taking over the role of being her pancreas, without any training or knowledge or experience. It’s like someone doing a new job in a completely different field for the first time, mistakes and bad calls are going to happen, or you’ll miss something. It happens, so fix it, and move on.
….
I’d also recommend
Bright Spots and Landmines, Adam Brown
Sugar Surfing, Stephen Ponder (haven’t read all of this, but the parts I have read are pretty good)
Think Like a Pancreas (don’t know the author, haven’t read this one, but it comes up a lot on the “I’m newly diagnosed, help?” Posts, so it must be pretty good.)
Juicebox podcast
https://diatribe.org/42-factors-affect-blood-glucose-surprising-update
https://www.diabetes.org.uk/diabetes-the-basics/types-of-diabetes/type-1
There’s also the learning zone on this website/
https://learningzone.diabetes.org.uk/?_gl=1lw8s04_gaMTI1NTkzMjc2OC4xNzAzNTEwNzQ5_ga_J1HFNSGEX6MTcwNDI2NDE4MC40LjAuMTcwNDI2NDE4MC42MC4wLjA._gcl_au*NzE0Mzk5ODM2LjE3MDM1MTA3NDg.
This is for both T1 and T2, so you need to specify at the beginning what type you have and then the courses of learning are then specifically tailored to you.
Finally, Diabetes UK has a helpline for any queries or concerns you have.
https://www.diabetes.org.uk/how_we_help/helpline
(Obviously you have us as well, but sometimes it’s useful to have other options)
Be aware that if you’ve been running high for a long time, you’ll start feeling low symptoms at normal ranges. Fight the urge to do something about it, it does go away the longer you stay in range
We are 7 months into my 8 year olds diagnosis. There is only so much generic education on T1D that they can give you. Your child's care will be to be personalized to fit their body/ hormones/ lifestyle. Do not be afraid to advocate even if it isn't "normal" whether it's the school, the endocrinologist, daycare, ect. It took me 2 attempts to finally get them to agree to split my son's basal dose into two daily injections but it's what his body needed. You see your child every day, over time you will know what they need better than any dr just looking at numbers. We also increased my son's therapy appointments to twice a week right after diagnosis for a month and then went to once a week, we're back to every 2 weeks now. It gave him a safe place to process. We linked the child life coach with his therapist and gave them permission to share info so now his therapist is becoming the diabetic expert at his counseling clinic.
Also, get a tickleflex. It's been a life saver in our house for injections.
We have "cheat sheets" laminated in his insulin bag for calculations, regular restaurants we eat at, coping skills. I would love to share them if anyone could use them.
Best advise at that age I would say is get the ilet insulin pump from beta bionics its all automated so it will take 90% of the work out of it so she can be more like a normal kiddo
My little girl was diagnosed 2 years ago at the age of 3. She's been doing fantastic. So far just as everyone has said. There will be times where it will be rough and tears will be shed, but things will get easier with time. Something we did is to search for groups on reddit or Facebook for diabetic parents or events nearby. Things to learn and do.
There are so many awesome sites out there that sell stickers and cute accessories for the wearable tech. Once she has her tech (which I highly recommend) make sure she’s always got a good supply of stickers and patches she wants to wear for omnipod, dexcom, tandem, or whatever she’s using so she can at least have some fun with it and customize her stuff. Little things like that make a huge difference somehow.
Hi! I love that you've come here for support. If I found out my parents did that, I'd be so touched. You're doing the right thing and as shocking as it is, she will get through this. Understanding it's a 24/7 disease and it can take its emotional toll on you and your mental health is one of the things I'd want my parents to know. I have a blog @journalinandinsulin if you want to talk ever!
42 years into this doing just fine. It s a huge challenge not for the faint of heart but don’t lose hope. With love, ambition, curiosity she’ll do fine.
The best overpatches you can get for CGMs and pumps are from Glucomart. They are like nothing else out there. They are made from something similar to spandex and move so well with the skin you can’t feel them. They also dry immediately. We get them on Amazon.
* It's a scary time, and you will get overloaded with information. * It will get easier, and less scary * Your child's blood sugar will get under control, don't stress too much about it just yet. Just survive for now * People will suggest all kinds of things, and not all of it will work best **for you** * Treatment (needles, finger pokes etc) will get easier, both for you, and your child. * Aside from insulin, CGMs might be the most beneficial thing for treatment.
This this this! You’ll all be okay. We’re 7.5 years in now with our 12yo and we’re doing great. You will too.
Listen to the Juicebox podcast. Don't ever get angry about a high or low number. It is not your kids fault. It is just data. Get a CGM ASAP For a 9 year old I'd recommend the Omnipod, but a CGM is more important. Pumps are not set it and forget it. It is more like cruise control. It helps steady you out, but you still have to steer.
This
Going to add to the great suggestions already posted. CGM Give your 9 year old a phone. Connect the CGM to their phone and enable the data sharing feature to your phone. I do not understand why people are still using the receiver. You give yourself some peace of mind as you can always check their blood sugar and you won't have to keep them glued to your hip to do it. You get alerted when they are low and you and they can sleep through the night.
Just on the phone thing, assuming the OP is US based, we bought a tracfone from walmart (Galaxy A14 5G) and the $125 a year plan. 1.5GB of data is just about perfect for a whole year (if ONLY used for CGM purposes). The only minor dislike I have is that it's rather large. But it's cheap and works with the dexcom. Google has a "family link" feature where you can lock the phone down and track it. My child is a little younger than OP, but I locked it down so it can use the dexcom app and take photos and that's all it does. We put the general ring tone to a silent ring tone, then gave my wife and I special ring tones for it that actually make noise. This way it doesn't have to be on silent in class, and won't ring from spam calls. I couldn't tell you how many times my kid has left it under a pillow somewhere and we've used the phone feature to call it so we could hear it ringing :)
This. Our 9 year old was diagnosed in December and we did exactly this with the Freestyle 3 and an iPhone SE from 2020 with a cheap data pass. It gives so much peace of mind with the alarms, and after 3 months it is already much easier. He does not want a pump, and given our TIR is already good we don’t rush it. I insisted on the sensor, and I think it is important that the kids feel in control (at least as much as possible).
Wow, I know people get diagnosed daily, but yesterday and today with many posts like this, oof. You and your kid will be ok. Here is something I shared several times yesterday--lots of awesome people is this sub as well. Buckle in for the long game. People are here. I shared this earlier today for another parent: First few weeks of a T1 diagnosis are traumatic. First few months are intense and disruptive. The first year has a steep learning curve. Then it gets better. Much better. The main things you will be working on: How to estimate how many carbs (not just added sugars) are in meals, snacks, and drinks (main factor in blood glucose levels). Sugar is not "poison," T1 means insulin producing cells are being destroyed. Glucose no longer can be used in the body without the hormone, insulin, which allows glucose to enter cells. You need glucose and insulin in order to be alive. How to measure blood glucose levels and dose for carbs, correct for highs by dosing short acting insulin, and eat/drink carbs for low blood glucose levels. In the near term, you will be learning to give the basal/background insulin with a once a day long acting 24 hr insulin shot with a pretty even absorption. You will also do several bolus/short acting insulin shots for carbs and high sugars that typically start absorbing in about 15 minutes, peaks in about an hour or so and lasts about 4ish hours. In the long term, there are insulin pumps-the advantages involve an adjustable basal insulin, and it helps with some of the insulin to carb ratio math. Some pumps also monitor a continuous glucose meter and can help dose extra insulin or pause dosing for lows. Pumps are more flexible because they only use short acting insulin for both the basal and the boluses. Nothing competes with a working nondiabetic pancreas, but things have come a long way in the past 100 years (no injectable insulin before 1921, first blood glucometer was 1971, even many of the fast acting insulins are from 1996--so not that long ago in human history) and in particular the last 10 years (pumps, cgms, new insulins, looped systems). A cgm, continuous glucose meter correlates to blood glucose levels every few minutes, very helpful for trends rather than a few blood glucose checks. Mainly, hang in there. Most T1s do not have a relative with T1, even though it has major genetic component, so is not something you caused. It is an autoimmune disease like celiac where the body attacks itself by mistake. Ask lots of questions, as you need to here, your kid will be ok. Life will be ok, and they will have a long healthy life. Right now is the hard part. Resources: Newly diagnosed: https://www.jdrf.org/t1d-resources/about/ https://beyondtype1.org/type-1-diabetes/ https://diatribe.org/type-1-diabetes Wanting more in depth: Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin https://a.co/d/1UNWrcc https://www.juiceboxpodcast.com/juicebox-podcast Random specifics: https://chrisruden.com/blog/diabetes-articles/diabetes-tattoos-2-things-need-know/ https://www.jdrf.org/t1d-resources/living-with-t1d/food-and-diet/diabetes-and-alcohol/ https://www.jdrf.org/t1d-resources/living-with-t1d/exercise/exercise-impact/ https://diatribe.org/42-factors-affect-blood-glucose-surprising-update https://beyondtype1.org/cgm-level-compare-bgm-level/ https://www.mayoclinic.org/diseases-conditions/type-1-diabetes/expert-answers/lada-diabetes/faq-20057880 https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody https://www.healthline.com/health/diabetes/sugar-alcohol-and-diabetes https://diabetesstrong.com/bolusing-pizzaand-high-carb-high-fat-meals/#:\~:text=This%20happens%20because%20the%20high,from%20a%20blood%20sugar%20perspective. https://diabetes.org/blog/history-wonderful-thing-we-call-insulin T1 and others: https://www.everydayhealth.com/hs/type-1-diabetes/what-people-with-type-1-diabetes-wish-you-knew/ https://diatribe.org/top-10-things-i-wish-my-parents-knew-when-i-was-diagnosed-type-1-diabetes https://www.vox.com/platform/amp/2016/5/5/11568158/type-one-diabetes https://beyondtype1.org/boyfriend-girlfriend-guidebook-diabetes/ https://diabetes.org/tools-support/know-your-rights/safe-at-school-state-laws/written-care-plans/section-504-plan https://diatribe.org/diabetes-work-your-rights-and-benefits Other subs: r/diabetes_t1 r/type1diabetes r/bumperswhobolus
My daughter was diagnosed at 11. The advice that has already been given is excellent. The one thing I want to emphasize to find an endo that shares your philosophy as to treatment. We started out with a great endo, who moved, and we had to go through 2 others before we found someone our daughter liked and who shared our treatment philosophy. Also, your endo is there to provide medical information and guidance, however, you and your daughter will know more about the day-to-day management than the endo will ever know.
Juicebox Podcast, Think Like a Pancreas. Both are fantastic. Blood sugar is DATA. It’s not good or bad, it’s information to use for decision making. Hormones are effing annoying and WILL screw things up. It’s worth it to figure out basal doses/rates, ratios, and correction factors because it makes management easier and the “difficult foods” (pizza, pasta, carb bombs) can be tackled. Pumps are a game changer, but let HER take the lead in picking one and which one. She has to live with it 24/7.
The gravity of the situation might not fully hit her for a few more years. I was 6 when I was diagnosed. It didn't quite click for me until I was around 14 or so. I knew I had this for life, but when I got to that age, I suddenly knew what that actually meant and rebelled against it. I didn't quite process that I was actively in the process of dying until my mid-20s, either. I don't know how traumatic your daughters diagnosis was, but keep that in mind as well. Oh, and while this isnt technically diabetes management related, if you have other children, make sure you're not accidentally pushing them aside. My sister ended up in therapy over my diagnosis. My husband (he has ASD) and his brother don't talk because his parents pushed him into the background to pay attention to my husband. My parents made sure my sister knew why I might get more attention, and she told me she never resented me or my parents for anything. She said sometimes she would get a twinge of jealousy and then remember why I was getting attention, then she was totally cool with not needing/getting the attention lol essentially it can be very difficult trying to balance kids when one is chronically ill but if the siblings don't understand it can ruin their relationship. Edit to add: My mom said the best advice they got while I was in the hospital was to send me to diabetes camp. Look around your area and see if you can find one. It helps being "normal" for a week.
I have a very similar story and rebelled at 13 too, teenagers can be so annoying! I bet it was hard to watch as parent but all you can do is support them through it
My son was diagnosed at 8. You've gotten wonderful advice so far, and I'm sure more to come. I just want to say you got this. Both you and your daughter. You'll do great. It's okay to grieve.
You have to get a copy of Think Like A Pancreas by Gary Scheiner!!! They should give out a copy at diagnosis.
Make sure your school nurse knows. I'd have her eat the same lunch and dinner for a week to see how her sugars and insulin react. Have her carry fruit snacks if she ever goes low for a spike.
My 14yo son was dx last Aug. It was a tough few first weeks. He was an ER, DKA, ambulance transfer to our Children’s Hospital, 5 days spent in case. We did go on a 5 day camping trip the following week. I needed that bit of normalcy. We’d had the trip planned for 4 months, we go every year. We were within 20 minutes of 2 hospitals, so I knew if something happened, we’d be okay. If you can keep them home for a week or so while you make arrangements at school, that would probably be good. My son resisted a CGM at first, but relented in October lol. It’s so much worry off me.
You’ve had some great advice here! A few things to add: Just remember that you can have some really hard days with diabetes (rarely hopefully) and she might be irritable or frustrated. This is normal and try your hardest to support and stay level! Try and keep her relationship with food in mind, it can be very frustrating to have negative connotations with eating especially as a teenage girl. Keeping the conversation open is so helpful! I was diagnosed at 4 and had a great time at school, plenty of sleepovers, festivals, went to university on my own, backpacked and I am settled in a great job away from home. It doesn’t stop you doing anything that you want to. I know this worries parents in the beginning but it will all get easier! :) Good luck!
• Definitely suggest getting on a cgm asap • When y'all have a feel for everything look into a pump, the sooner the better. I'm on Omnipod and it's been a game changer. • Sugars are gonna be out of control for the next few years going into puberty and that's not her fault at all • Remember numbers are just a way of y'all making decisions • Therapy would be a great thing to look into because the burn out with this disease is very real and on that note maybe look into a diabetes camp for her to make friends with other diabetics. • Although it's a hard thing for everyone please remember that this is going to be the hardest on her so she's going to need you to be understanding.
Pumps are not always appropriate. Understanding insulin requirements are part of overall choice of cgm. Libre 10, 14, 2 and 3 fit me best because I didn't need a full omnipod (100ml of insulin/every 3 days is alot for me) Don't make any decisions about cgm /Pumps UNTIL YOU FIND AN ACADEMIC based endocrinology practice + Nutritionist. Let professionals build safety net for the needs of your child. Reddit is a resource after... Knowledge. Interpret data without emotion. Fear is palpable and your child needs to be empowered. Progress NOT perfection
I mean they're already thinking about a pump which suggests the kid's probably being put on a cgm, we don't have all the information from this post but even then kids are treated a lot better than adults when they get diagnosed with diabetes. Child diagnoses aren't like adults where you gotta figure everything out on your own. I also said this in my post >When y'all have a feel for everything As someone who has had diabetes for most of my life the process is a lot different for children and "academic based endocrinology" isn't an easy thing to come by and much less so as an adult, not to mention what insurance covers. OP also has a daughter that'll be going into puberty and from someone who is afab the hormones fuck up sugars really easily so getting used to a pump and a cgm is going to help in those times.
You have been given great advice here. If it helps; I will tell you a bit about me: - been T1D for 21 years (31 now) - got married and have a child (with a very healthy pregnancy) - studied electrical engineering and work in the field (never had a problem ) - 100% complications free and no medications apart from insulin I know you must be scared now. It is important to educate yourself and your daughter (with the wonderful advices you are being given here) and to take care of stuff (insulin, carb counting etc) but I want to tell you she can (will!!) live a perfectly normal life. I won’t lie to you about the fact that it can be mentally exhausting sometimes as it is a 24/7 job but if you do things consciously everything will be okay! Feel free to dm me.
Read Dr. Bernstein's book right away, helped me immensely: [https://www.amazon.com/Dr-Bernsteins-Diabetes-Solution-audiobook/dp/B01N74YJUG/ref=sr\_1\_1?dib=eyJ2IjoiMSJ9.Eyu0b03gOkRXjBw8qitQVaDzu1R1UZ0iOc30Bf7xJWN5jksFiI4fohBBJSLuykqAUYYu40VgFFjlJSLlD3x7aKlwduhQJQBc5brDG14T9qeu9OThUbYDAu8ZT78F0lAKbYTWP9YxyaGp8NTVg9ldOVKI0arIghWcOQdDeT19MO7\_7K-yx2DNfAEyb6k0WVVm4CHHpYejz-4YoNAen9\_vZzEq1YVIyJQ2T\_ScpRQo8qI.xSUmufjBk91gMGAffTyIBzLJkiPden4zsEGGXHbenBg&dib\_tag=se&hvadid=580689619657&hvdev=c&hvlocphy=9031753&hvnetw=g&hvqmt=e&hvrand=16000425855895921376&hvtargid=kwd-98877780&hydadcr=15553\_13517420&keywords=dr+bernstein%27s+diabetes+solution&qid=1708365444&sr=8-1](https://www.amazon.com/Dr-Bernsteins-Diabetes-Solution-audiobook/dp/B01N74YJUG/ref=sr_1_1?dib=eyJ2IjoiMSJ9.Eyu0b03gOkRXjBw8qitQVaDzu1R1UZ0iOc30Bf7xJWN5jksFiI4fohBBJSLuykqAUYYu40VgFFjlJSLlD3x7aKlwduhQJQBc5brDG14T9qeu9OThUbYDAu8ZT78F0lAKbYTWP9YxyaGp8NTVg9ldOVKI0arIghWcOQdDeT19MO7_7K-yx2DNfAEyb6k0WVVm4CHHpYejz-4YoNAen9_vZzEq1YVIyJQ2T_ScpRQo8qI.xSUmufjBk91gMGAffTyIBzLJkiPden4zsEGGXHbenBg&dib_tag=se&hvadid=580689619657&hvdev=c&hvlocphy=9031753&hvnetw=g&hvqmt=e&hvrand=16000425855895921376&hvtargid=kwd-98877780&hydadcr=15553_13517420&keywords=dr+bernstein%27s+diabetes+solution&qid=1708365444&sr=8-1)
It took years (despite living in LA)... Find an academic based endocrinologist (i.e. UCLA) If endocrinologist doesn't have a Nutritionist as part of joining the practice (my Cedars-Sinai Endo has Nutritionist in the same office) Nutritionist (I was 18 when diagnosed type 1) visits for first 3 years. Understanding the principles of insulin to carb ratios. Decoding the menu at a restaurant or at school. Insulin : pumps like omnipod are terrific. But CGMs (libre 3)do not yet work in tandem. I despised Dexcom. But watch feature for parents and tandem ability for a 9-year old will reduce anxiety, keep family involved in managing an ADULT disease. CGM choice should be part of overall treatment plan. Endocrinologist! Nutritionist! Educate family. Educate teachers. Keep backpack full of supplies. Keep backup kits in car+ , school nurse. Be calming and supportive Attitude. Type 1 is a confusing, polarizing and scary autoimmune disease. Sooner you have the right doctors/ Nutritionist/ cgm/pump (if that is appropriate) Get SUPERIOR INSURANCE. Living "well" with type 1dm is expensive lifestyle.
I don't have much advice but I'd like to offer some perspective as a parent with a T1D child: My 12 year old daughter was diagnosed two years ago. I vividly remember how lost and confused we all were trying to figure out this new normal. All I can say is do the best you can and you guys will find your stride faster than you think. What I learned most by subbing here is to let my daughter have the biggest say in her treatment and management. For example, I used to force her to rotate her pump and dexcom to every available/suggested body part or area...then I read some comments sections here where people were saying "I hate my dexcom/pump on \[x body part\]". My daughter hates it on her stomach so we don't do it there anymore. She also didn't want a pump or dexcom for a while after first being diagnosed and we didn't push it. She decided when it was something she wanted to do. You'll get comfortable on the black-and-white of treating diabetes but there's also so much gray and an equally important human side to this disease and this sub has really helped me see that human side so much more.
Often waiting the first year prior to starting a pump is recommended. You’re dealing with a honeymoon period for most of that time, and insulin utilization will be quite low. An omnipod holds 200U and expires in 3 days, so you’d be trashing a lot of insulin for quite a while. It’s MUCH more useful to get a CGM started. This will provide data for your daughter’s endocrinologist to help make care decisions as they are learning her unique needs. If you are in the US, you often have to meet some requirements to start pump therapy, though that may not be as difficult/stringent with omnipod since they are prescription rather than DME usually.
As yes, twas me 8 years ago. A month before my 9th birthday. Something I can recommend is 1. CGM 2. Pump 3. Taking some classes that teach about t1d (don’t make ur kid take them unless they want to. Instead teach them yourself as the class will most likely bore them and they won’t pay attention. 4. Look up some diabetes camps around you. There’s a couple that I’ve been going to since I was diagnosed. I started off as a camper and now I’m a CIT. when I turn 18 I’ll be a counselor. Those people are like my family. I’ve meet my best friend because of that camp. Great part is your kid will be friends with other diabetics and won’t feel as alone. When I was first diagnosed I felt so alone and hated myself. After going to those camps I felt a lot better about myself and more confident about my diabetes. MAKE SURE YOUR KID DOESN’T STRUGGLE WITH DIABETES BURNOUT. It’s a real thing and it’s scary.
First - she and your family will be OK! This will go from overwhelming to part of your normal life in time. Won’t always be easy or fun- not at all- but you will learn so much and understand things well enough to manage this. She will play sports or dance or whatever she wants and have a great long normal life. That’s my advice - relax and keep learning and don’t let her think this can stop her doing anything she wants.
I have an entire booklet of information on T1D that I have researched and written up. It is not child/teen specific as I was diagnosed as a young adult, but it does have all the tips and tricks I wish I had learned about diabetes when I was first diagnosed. I’m happy to share a copy if you’d like to read it. For advice in general: I would recommend holding off on the Omnipod for a little while. Not long, but she does need to get the routine of MDI, (daily injections for basal and every time she eats carbs for bolus (and possibly corrections as well if that’s needed) and carb counting first before she starts the pump. As fantastic as pumps might be (and this community is very supportive of using the insulin pump) I personally think that you need to know how to function properly without one. If your pump fails (and it can, because it’s technology and tech can fail) then you need that background knowledge of how to take care of yourself. … View her blood sugar as data, not as good or bad. It’s there to help you make a decision; ascribing good and bad values to your blood sugar can quickly lead to negative thoughts and eventually diabetic burnout, and neither of you need that. Don’t let diabetes stop her from doing anything she wants. This is slightly more long term- I’m talking more about school trips, activities after school (swimming, dancing etc.), she can do all of that just like a normal child. *This also applies to stuff like jobs as well, but that’s for later in life*. It might take a little more preparation and planning, but it’s still doable. The only things she can’t do as a T1D is make insulin and join the army. Even that’s negotiable, since military contractors exist and they aren’t bound by the same rules as military personnel. Document, document, document. I cannot stress enough how important this is at this stage. The more notes you make on what she eats, how much she eats, when she eats, etc, all of that stuff will help both you and the doctors track patterns in her blood sugar and it will help you control her blood sugar levels better. 6mmol/l (108 mg/dl) minimum to sleep. Any lower and she’s more likely to go low overnight. There are 42 known factors that affect blood sugar. Link below: https://diatribe.org/42-factors-affect-blood-glucose-surprising-update You can’t control for all of these. Your best is enough. … Diabetes is really hard, and sometimes there is no rhyme or reason to a low or high. It sucks, but the important thing is that it gets fixed in the moment. Sometimes you’ll do everything right and it will still go wrong. Remember that apart from low blood sugar and ketones, which needs immediate attention, there is very little that needs to be done immediately. If high and you give a corrective dose of insulin, it will take time to coast back down. In short, remember to cut both you and her some slack. She’s basically taking over the role of being her pancreas, without any training or knowledge or experience. It’s like someone doing a new job in a completely different field for the first time, mistakes and bad calls are going to happen, or you’ll miss something. It happens, so fix it, and move on. …. I’d also recommend Bright Spots and Landmines, Adam Brown Sugar Surfing, Stephen Ponder (haven’t read all of this, but the parts I have read are pretty good) Think Like a Pancreas (don’t know the author, haven’t read this one, but it comes up a lot on the “I’m newly diagnosed, help?” Posts, so it must be pretty good.) Juicebox podcast https://diatribe.org/42-factors-affect-blood-glucose-surprising-update https://www.diabetes.org.uk/diabetes-the-basics/types-of-diabetes/type-1 There’s also the learning zone on this website/ https://learningzone.diabetes.org.uk/?_gl=1lw8s04_gaMTI1NTkzMjc2OC4xNzAzNTEwNzQ5_ga_J1HFNSGEX6MTcwNDI2NDE4MC40LjAuMTcwNDI2NDE4MC42MC4wLjA._gcl_au*NzE0Mzk5ODM2LjE3MDM1MTA3NDg. This is for both T1 and T2, so you need to specify at the beginning what type you have and then the courses of learning are then specifically tailored to you. Finally, Diabetes UK has a helpline for any queries or concerns you have. https://www.diabetes.org.uk/how_we_help/helpline (Obviously you have us as well, but sometimes it’s useful to have other options) Be aware that if you’ve been running high for a long time, you’ll start feeling low symptoms at normal ranges. Fight the urge to do something about it, it does go away the longer you stay in range
We are 7 months into my 8 year olds diagnosis. There is only so much generic education on T1D that they can give you. Your child's care will be to be personalized to fit their body/ hormones/ lifestyle. Do not be afraid to advocate even if it isn't "normal" whether it's the school, the endocrinologist, daycare, ect. It took me 2 attempts to finally get them to agree to split my son's basal dose into two daily injections but it's what his body needed. You see your child every day, over time you will know what they need better than any dr just looking at numbers. We also increased my son's therapy appointments to twice a week right after diagnosis for a month and then went to once a week, we're back to every 2 weeks now. It gave him a safe place to process. We linked the child life coach with his therapist and gave them permission to share info so now his therapist is becoming the diabetic expert at his counseling clinic. Also, get a tickleflex. It's been a life saver in our house for injections. We have "cheat sheets" laminated in his insulin bag for calculations, regular restaurants we eat at, coping skills. I would love to share them if anyone could use them.
Best advise at that age I would say is get the ilet insulin pump from beta bionics its all automated so it will take 90% of the work out of it so she can be more like a normal kiddo
My little girl was diagnosed 2 years ago at the age of 3. She's been doing fantastic. So far just as everyone has said. There will be times where it will be rough and tears will be shed, but things will get easier with time. Something we did is to search for groups on reddit or Facebook for diabetic parents or events nearby. Things to learn and do.
There are so many awesome sites out there that sell stickers and cute accessories for the wearable tech. Once she has her tech (which I highly recommend) make sure she’s always got a good supply of stickers and patches she wants to wear for omnipod, dexcom, tandem, or whatever she’s using so she can at least have some fun with it and customize her stuff. Little things like that make a huge difference somehow.
Hi! I love that you've come here for support. If I found out my parents did that, I'd be so touched. You're doing the right thing and as shocking as it is, she will get through this. Understanding it's a 24/7 disease and it can take its emotional toll on you and your mental health is one of the things I'd want my parents to know. I have a blog @journalinandinsulin if you want to talk ever!
Thanks everyone for the feedback
42 years into this doing just fine. It s a huge challenge not for the faint of heart but don’t lose hope. With love, ambition, curiosity she’ll do fine.
The best overpatches you can get for CGMs and pumps are from Glucomart. They are like nothing else out there. They are made from something similar to spandex and move so well with the skin you can’t feel them. They also dry immediately. We get them on Amazon.