As a few others have mentioned, get your son on a Dexcom as soon as you can. If your Endo says you need to wait “until you learn how to manage things”, be very persistent with them, or find a new Endo. Dexcom is a tool to help you manage things. And, it will let you sleep at night. I also recently started using SugarMate with my daughters Dexcom, and it will even make a phone call to you when they go below a pre-defined number. Best thing ever. We didn’t go on Dexcom until about 4 months in, and our Endo did offer it to us right away. We quickly wondered why we made that poor decision as it made nights, days, school, time with friends, sports and everything else so much easier.
Hi, yes I’m now looking into it now that everyone here has educated me on it. I went through the website to fill out the application, and I guess some should be following up with me. I called yesterday but the person designated to my case was not available. Did you get it through the Endocrin’s office or did you just attempt it on your own. I also want the pump for him but i guess that comes with time from what I heard.
Hi Christine, a continuous glucose monitor will be able to alert you and wake you/him up at night, in the event he becomes hypoglycemic. Diabetes is totally manageable. I hope you allow him to continue being him and don’t take away from his play time because of fear. He will get the hang of his health. He will feel his lows. A trick to see if his suagr is low while sleeping is to check for night sweats.
Since he was newly diagnosed, his endo just might have to change his insulin dosages until his sugars are more stable. I have been type 1 since age 12. Now 26. I hope you can look into the glucose monitor.
Hi @Cca1502. I was diagnosed in 1963, at age 3, and am alive and kicking and doing well. Since your son is 10 years old you might check out diabetes camps. In addition to making friends with other kids with diabetes he will learn will learn some age appropriate management skills. There are professional and Olympic athletes with diabetes, teens on school teams, and people who hike, bike, swim, play tennis etc as part of their fitness routine. As you talk with your endo, diabetes nurse educator and dietitian you’ll both learn how he can safely enjoy exercising and being on a team with his friends.
Yes, you’re right I just have to figure out how to keep him safe while exercising. We went back to soccer the weekend following our discharge from the hospital. I was scared out of my mind, had anxiety, even cried while he was playing.
He on the other had was stoked and so happy after the game. He had the time of his life. He’s back to his normal self now. Not sad anymore. It’s me that is still on an emotional roaster. Hearing you all though, and your stories help that’s for sure.
Glad to help. You have lots of tools and knowledge available to you that we never even heard of when I was small. The first BG meter I used was at summer camp and it had to be kept on a tabletop. When parents asked when the technology would be available for home use, they wete told only professionals could understand it - oh how times have changed! And CGMs didn’t come along until much later. Take a deep breath. Yes, it’s scary and overwhelming; but with a good medical team on your side, and the support of other parents and forums such as this, you will get through.
Great advice from everyone here! I was diagnosed 50 years ago and my teen daughter was diagnosed at age 6 (thru TrialNet.) She’s been an avid soccer player since kindergarten and she’s done 8 triathlons and lots of other activities!
I agree, first thing is get the CGM, the endocrinologist will facilitate this & need to write the prescription and medical necessity but by filling out the form on line at the Dexcom site, they will help you to coordinate that and with your insurance.
2. Camp is such a great activity and every kid with T1D should have the opportunity to go to camp at least once (or every summer!) (I went to my camp when I was 7. Both my child and I learned to give ourselves insulin shots at camp (as kids) & it was a big celebration! The American Diabetes Association website www.Diabetes.org) has a list of camps in every state
3. Awesome event for every member of families living with T1D is the Children with Diabetes Friends for Life in Orlando every July.
4. Sending prayers for your child’s success with Diabetes! You can do this!
Get a dexcom 6 , it would be hooked up to your phone 2 , and you would get a alarm if hes running low , I know it’s scary, get educated, it’s a discipline disease, if you have discipline you can control it ! I’ve had it almost 40 years , lived a awesome life ! , no side effects ! Just discipline and control
Hi Christine, I’m a bit late to the game here. My son was diagnosed at 14 months old and is now 10. Let me tell you, it’s okay to be scared. I still worry even now, but as a mom, when aren’t we going to worry?
Life didn’t just hand us a lemon, it dumped a whole truck in the path and they went scattering everywhere. I can also say Dennis and Joe are awesome people to talk to on here if you need them! They both have helped me a ton.
When you see readings of super high or super low numbers (I get tongue tied with the word glucose), don’t panic. Just say to yourself, okay mom we got this, and treat it as your doctor said to do. There will be a learning curve, and lots of lost sleep. That, I think we can all guarantee. I still stay up until midnight to check him. Sometimes I can get a nap in.
My son has been as low as 28 and playing around like normal, and high enough that the meter can’t even read him, while he’s just sitting there reading his Geronimo Stilton book.
It’s a lot to take in, I know. But, there is a good community here and we’ve got your back mom. For now, just breathe, you’ve got this. Good luck.
Hi Christine, my heart goes out to you. This diagnosis is scary and overwhelming when it happens. Be kind to yourself and let the tears flow. My daughter was diagnosed 7 months ago at age 10, and those three nights in the hospital, and all the training (by incredible team) was just beyond overwhelming. I think I probably cried every day for a month, but also knew I had to be a warrior for my kid and pave the way so that she could continue to do everything she has always done. Not easy at all!!! Especially with the lack of sleep. It honesly felt like having a newbon checking twice during the night to make sure she was okay. I’m so glad your boy is still playing soccer, it’s so important though I know so worrying about the possible lows, but yes you can start to feel your kid’s reaction to exercise and how many extra carbs work for him etc. I’m having a problem with my girl not wantting to do much exercise but we’re working on it, and starting tennis this summer which I hope she will love. We hope to the CGM soon! Still waiting on approval. Good luck with everything, you are a great mom, and your boy will be fine. This community is a great source of advice and support.
I didn’t read all the responses. I’m sure I will repeat advice. Nonetheless, get a CGM as soon as you are able. You’ll sleep much better!
Regarding soccer, my 11 yo son (diagnosed at 9) does EVERYTHING other kids do! He plays football and lacrosse. He goes camping and fishing. I make sure he has a water bottle full of Gatorade for games - this keeps him from going low. His dad goes on the camping trips and monitors his bsg. He lives a mostly normal life - except that he wears a pump and a CGM.
Next year, my son will be hiking the Rockies with his dad! And he will bring along lots of glucose gel and insulin supplies. They will have a great time.
T1D does not debilitate us!
I would contact Dexcom and have them start checking your insurance. Some have pharmacy coverage and for some it’s a DME. If I had spare money, I’d get the prescription and go down to Costco and buy it myself. We went 1 month without it and that was the longest month of my life! We’re 6 months in, on MDI still and loving our Dexcom G6. We’re also on several FB groups, Shift (which is a sugar surfing group), TypeOneNormal and TypeOneGrit. I gleen info, recipes, and insights from all of these. Just do what the endo says in the beginning and gradually you’ll become the best doctor your child has once you gain the knowledge.
Hi. I am a parent, and I am sorry for your loss. (Your son’s , too, but that is a separate conversation). My wife and I have experienced similar anxiety–and loss. You, I may suggest, have lost your vision of the future for you and your child. I urge you to take care of yourself; you can be of no help for anybody unless you stay healthy! Please consider counseling; it will provide an outlet that you will to provide yourself strength and sanity to help your child. I hope this post will lead you to realize your child is not the only one affected by T1D, but that you can help yourself–and come out stronger by confronting your fears and grief with the help of a trained mental health professional. Sincerely, Tucker K.
Hi, I came down with Type I when I was 4 years old and am now 72 years old. I would talk to your MD and get a glucose sensor. It will alarm if blood sugar goes low at night. Needless to say I did not have a sensor all of my life. I had 3 babies, my husband was out to sea in Navy. To make sure that I didn’t die during the night with my 3 babies left a lone. I kept my blood sugars high at night. I kept them around 200 at bedtime. As long as you don’t keep them high for years, he should be ok. In fact you might keep them high for a week and get some sleep then check about a sensor.
First of all, what you are feeling is totally normal. This is all unknown to you. Take it one day at a time and remember that the treatment has come a long way and your son can lead a full life and fun life and can continue to do all of the things he has been doing. Yes, there will be adjustments and it is a learning curve but it will get easier. Night time lows can be scary, I had a bad low when I was around 10 and it affected me for sure, but it has only ever happened once and I have been diabetic for 37 years. If you are waking your son throughout the night every 3 hours, he will be just fine. If you are writing those down, you will eventually notice a pattern and then perhaps the time in between waking him will get longer. Don’t disallow him to do fun stuff like soccer, exercise is so good, especially for diabetics. Just be sure he has enough of a snack prior to playing. Protein will keep his blood sugar more level than loading him with carbs. There is about a 12 hour window where his blood sugar could drop from his activity so just monitor. Does your son feel when he is getting low? Is he on the pump? You must have a specialist that is available to you 24/7? As far as running a high blood sugar, there are no real dangers in the moment, BUT, if your son is high, he won’t feel well, his energy level will be low, he’ll be lethargic, it’s not a great feeling. AND continuous high blood sugar is what causes complications later in life - nerve damage, eye damage, kidney damage…please don’t let this scare you, I’m sure you’ve been made aware of this. These things happen to diabetics who go through life not taking care of themselves. Running a bit high to ease your mind while you get use to you new ‘normal’ is okay, in my (non-medical) opinion. Christine, life will not be the same, and your son will never be able to go a day without thinking about the things that come with living with this condition, there will be super frustrating days where he curses being a diabetic, that is the truth of it, but it is the new reality and it just becomes life, and its actually okay. And as a parent, you will worry, cuz that’s what you do, but it’s not always going to feel like it does right in this moment. Allow yourself time to adjust, know it’s totally normal and okay to feel all your feelings, and continue to reach out. But please, try to keep your sons life as much the same as it already is, as far as sports and camping and such…there’s just an extra element in there. You can do this! We women are strong soldiers!!
I cam happy to chat anytime, honestly,
One more thing, Christine. As I became a bit older, I became slightly angry and resentful about my diabetes. I don’t believe this happens to everyone, but my mom was offered counselling and she declined, thinking we don’t need that kind of help, we can get through his on our own. She now says that is one of her biggest regrets. I have worked through a lot of things as an adult and have been to counselling, but I think it would have been beneficial to see someone when I was younger. My mom was truly amazing and did her best. I just wanted to share this and encourage you to continue reaching out and using whatever resource necessary if you think it would help. Your son may never need this like I did, but if he seems super down or angry consistently, something to consider…I’m thinking later, not while he’s adjusting. It was several years after I was diagnosed that I became a bit mad about life. The fact that you are reaching out already leads me to believe you will be more than fine
Hi Thanks for the advise. You asked if my son feels when he’s low, and yes so far he does, but not until it’s in the low 50s. He gets super nervous, anxious, and shaky when it happens, but when it happens we nip it in the butt very quickly with a juice box or starburst. I of course panic, and my heart drops every time. Because the diagnosis is still so new the nurse case manager at the hospital is still adjusting his carb to ratio, and even his basal. He hasn’t really had highs anymore, I mean maybe once in a blue moon which I still don’t get why it happens since I cover the carbs. He isn’t on the pump yet but it is something I’d love to have for him. I know the pros to the pump, but not the cons yet, so I still want to do more research on it. I will mention it to his doctor on our one month visit after diagnosis for sure. As for the CGM we are in the process of getting our insurance to approve it, which they said may be a total of three weeks before we get it. I can’t wait to get that. I think it’ll relieve a lot of my stress. Therapy he started about one or two months before diagnosis due to his anxiety so thankfully he’s in that so he can discuss with his therapist about how he feels being T1D. From what I know he still won’t talk about the diagnosis with the therapist yet. You mentioned that you went through a time that you were angry, because you have Diabetes, why exactly though? I want to know so I can possibly try my best for him not to be angry later in life. As of now he’s ok but he’s embarrassed to get injections in public or check blood sugars. That’s one thing that makes me feel bad for him, because I hate the fact that he’s worried about people staring at him, or what they may think. I tell him all the time that it’s ok to not worry about others or what they think that this is his life. As far as soccer he’s still playing but I still get worried while he’s playing. During the summers he swims a lot also, and that’s another worry I will soon have too, figuring out how to manage it.
Your son is (probably) still making insulin. This period is called “honeymoon” and is very common once you start taking insuin and your blood sugar comes down. His own insulin will keep him from going too high. In the coming months (1-12) he will stop making insulin entirely and, sorry, but he will get very highs and very lows. The lows come from having to use more insulin.
Pump “cons” are typically around the higher potential for DKA, higher potential for scarring, higher incidence of infection (typically at the infusion site) and then a whole bunch of minor (many not be minor for everyone) problems with adhesives, irritation, soreness, bleeding, etc.
You have to want to pump, so you have to be OK with and able to respond to alarms, pushing buttons, general troubleshooting, and there will be new reasons for an unexplained high that include a clogged infusion set/site. For many - and I include myself - pumping has advantages over MDI. cheers good luck.
see if you can get a dexcom G6. my son was diagnosed a little over a month ago. we sleep much better now. you can set the alerts however it makes you comfortable. i don’t worry about him riding a little high at night. also, once they figure out the correct lantus dose, he will be much more stable at night as well. it will work out. my son is also a competitive soccer player (was on the field again literally the day after leaving the hospital). with a dexcom or even a freestyle, he can check BG every time he comes off the field. want to watch more for the postgame lows. there is a lot of good material out there on sports and diabetes management.
I think I was angry because this was something that I had to deal with everyday and at times I just felt like it was a pain. If my weight fluctuated, I’d blame the diabetes, if I went low and had to stop what I was doing, I’d get annoyed, if I was high and couldn’t figure out why, I’d be annoyed. And then anything that didn’t go right was the fault of my condition…I think part of it was just, ‘why me?!’, ‘why this?’ ‘I hate testing my blood!’ ‘I hate getting injections everyday!’
Over time, I realized its super manageable and not so bad, but still irritates me to no end some days. But I’m alive and living a great life. I think your son will get over his embarrassment. Injections and testing are what keep him alive and if anyone judges him for that, they are likely ignorant. I use to test and give myself shots all the time without leaving the table at a restaurant, I would be discreet but certainly wouldn’t excuse myself and go to the restroom. Now I am on the pump but still pull it out of my sports bra when I need to, I don’t care where I am, lol. The CGM is so awesome, and if you can get that covered, great! I cannot which is super frustrating, but it, in combo with the pump (eventually) will be really great. They communicate so if your son’s sugars are approaching a low, the pump will beep at him, likewise with high BG so he can be proactive in avoiding the ups and downs. It will also read on a graph so you guys can see the patterns of his levels. It’s amazing to me, all of these new ways to manage diabetes. When I was diagnosed, I use to have to pee in a cup then I would have a vile set up with a dropper - I would put a certain number of drops into the vile then add tablet to it and it would fizz up and then turn a certain colour which I would then compare to a chart to see what my blood sugar level was. It was like having a science experiment set up in my bathroom! There was no carb counting and injecting accordingly, I had 2 shots a day, one in morning, one before dinner. My mom had to weigh and measure all my food and I had to have the same amount each day. Thinking back, it was like the Stone Age, haha. Doesn’t mean the learning curve and adjustment period is any easier, but your son’s life certainly will be.
As for the pump, I don’t see a lot of cons. For me, it’s having it on me 24/7. I’m a woman and it is now summer so when I wear certain outfits, I don’t know where to put the darn thing…not much of a con is it? It has to be calibrated each morning and each night which just means that your son will have to test his BG on his machine, and the reservoir and infusion set needs to be changed every 3 days - not difficult at all. He can disconnect it while he is swimming but everything is waterproof including the CGM. The pump and CGM will also be a new learning curve to go through but I think it is a super positive thing and you will both be happy with it. Your son won’t know until he tries and if he finds it a pain, then you go back to injections. I’m fairly new to the pump as it just became covered by medical so it hasn’t even been a year that I’ve been on it. If you have any more questions, please ask. If your son wants to chat, please tell him to msg me. I am a nanny and the kids I am with are actually the same age as your son, I’ve been with them for years now so I’m use to chatting with kids Oh and you are so lucky that your son feels his lows, that will likely not change. Some kids do not, I can’t imagine. It really is an awful feeling and it causes serious irritability and weakness and sweating and a whole plethora of feelings, luckily they only last until the BG comes back up. Sometimes I would just fall to the floor and start crying - so not anything to worry about, just another wonderful sign of low BG to be grateful for. I will be thinking about you all and praying for a smooth transition. You sound like an amazing mama that has thought of everything to make this as easy on your son as possible. One tip: my mom never showed me how sorry she felt for me. She was supportive and loving and understanding and patient, but never felt sorry for me in front of me. She cried herself to sleep at night which I found out later in life but would never have known, she was so strong. I think because of that, I never used my diabetes as any excuse for anything, I’ve never used it to get special treatment or special attention and I’ve never felt sorry for myself around my friends. My cousin, who is also a diabetic, and I would have our ‘sorry sessions’ together because we understand what its like but thats our thing, no one else really understands. I hope your son finds someone he can just totally spill his feelings to, and have his own ‘sorry sessions’. There must be a forum or something like this for kids…maybe I’ll look into that for you over the weekend.
Give yourself a big pat on the back! You’re doing great!