My 10 year old son was diagnosed on December 22nd when I rushed him to the ER after a bad bout with Type A flu. The triage nurse (thankfully) recognized the symptoms of DKA and tested his sugar (which was at 660 ). Everything was a blur after thatā¦ I knew absolutely nothing about T1D. I do now!
As a single mom, I am feeling a lot of pressure to be strong all of the time but the what-ifs and unknowns keep creeping into my head. Up until now I have been trying to take a deep breath and push through them, however itās not healthy to hold it all in. Everything is not āfineā but it will beā¦ and I have to learn to work with that. I made the decision to join this forum not only to help me through those āmomentsā, but to educate myself and be part of future solutions. I am scared, for my boy, even terrified at times, but I am also very optimistic that with the advancement in research and technology he will be able to manage this fairly easily.
For now we are using the Lantus and Novolog pens but I plan to talk to the endocrinologist eventually about the pump. I also did some reading on the Dexcom for monitoring. It is especially appealing to be able to see his numbers throughout the day when he is at school or other activities. Thoughts on how soon is too soon to switch to one of these devices? He is a very active kid and plays baseball 9 months of the year and loves to swim. Would one of these devices not be appropriate with those types of activities?
Lastly, is there any advice, travel tips, eating out suggestions or āthings you wish you knewā early on? My son is a constant grazer and itās becoming an issue with him getting tired of eating cheese, rice cakes or a handful of nuts. He is allowed a snack under 10g of carbs. I will gladly take suggestions.
Thanks for reading and I look forward to getting to know some of you.
first - sorry about the recent diagnosis. the first year can be tough with all the new things you have to learn. all I can tell you is that you can do it, and you can find all the strength you need.
there is no actual minimum age for a pump. endos opinions vary. you should probably get comfortable with lantus/novolog because the pump exposes you to even more difficulties (more complex troubleshooting), which can add to an almost overwhelming amount of things you need to learn. the pump and cgm are not for everybody - I use them because itās working the best for me but I was also successful on shots.
restaurants add fat and sugar to everything. get a handbook like āThe calorie kingā so you have a basis for carbohydrate counting, introduce new foods a little at a time so you can figure out what kinds of foods do what to blood sugar.
I hope you have access to a CDE (certified diabetes educator) to help this first year they are crucial to getting a workable plan for food and insulin.
if you like to read there is a book āThink like a Pancreasā which has an enormous amount of information on diabetes.
Thank you Joe - I just bout the book āthink like a pancreasā on Amazon! We do have access to an educator however our next clinic appointment is not until the end of the month. In the meantime I am trying to gather information and create my list of questions for them. Good to know about the pumpā¦ I had mixed feelings about it. One step at a time I suppose!
So sorry to hear this. Iām a newbie, just 1 year into diagnosis. I also got so much information from āThink Like a Pancreasā . I also had to do constant grazing at first to put weight back on. I did nuts, cheese, cottage cheese, plain yoghurt, avocado. I didnāt have to bolus for these. Good luck. Weāre here for you. You can do this!
It sounds as if you are starting off on the right path and your son sounds like a wonderfully active kid - yeah, you have a handful to deal with.
@joe offerers some great advice and I donāt have much more to offer at this time other than also suggesting that you wait a while before trying a pump 0 a pump has been perfect for me. You and your son will have much to learn and one of the most important ālearningā experience will be observing how different activities, different foods and insulin AFFECT HIM - as each of us is different and we do not always react the way the book says we should.
Most of all, give your son room to grow, be a great kid and donāt let diabetes hold him back - we with T1D can, with a knowledgeable and watchful eye manage our diabetes to fit full, active and productive lifestyle. Stay positive.
Continue sharing progress, ask questions on here and with his CDE and when you need visit here to vent your frustration. There are many volunteers her ready to listen and make suggestions - Iām not a medical doctor but I will offer suggestions based on my more than 60 years of living with diabetes.
Sorry to hear the awful news about your son! I was in the same boat with my 12-year-old daughter last February, when she was hospitalized for a localized infection that had gotten out of control, but the doctors didnāt diagnose the diabetes that time. They finally thought to check her blood sugar when she returned to the emergency room in March with pneumonia. She wants to do injections for the first year, just to get used to that lifestyle, then is considering switching to a pump. Sorry I cannot advise about the pumps and Dexcom. However, about snacks: my daughter will eat an entire jar of dill pickles, a handful of olives, and tablespoons full of peanut butter. She also will eat three turkey dogs at a time, beef jerky, slim jims (the āhealthyā ones from the co-op). She has gotten to the point where she is able to guesstimate the number of carbs in most foods, which creates more lifestyle freedom. Hope that helps!
Hello,
My daughter is just over a year diagnosed, she has both dexcom and Omni pod pump. We started with the dexcom first 3 months in it takes time to get use to, so one thing at a time is easier. Then we did the pump in the summer 6 months in. The summer was easier because there was multiple trips to the endocrinologist. We love both, changing them is not fun, but seems better then 7-10 shots a day. You can ask doctor for numbing cream/ spray!
I hope this helps!
Maria: Congrats for being proactive, and engaging in self education. Our 11 year old daughter was diagnosed 4 1/2 years ago. My thoughts: āThink Like a Pancreasā is the best single source document out there and Gary Schreiner is a great educator (we hired him for about 4 months for FaceTime consults while getting our act together. Worthwhile if youāve the means, but everything we learned in those sessions was in the book). We attend a good pediatric endo clinic with decent educators, but you can (and should) learn far more from other sources like Gary. Weāve learned a lot by attending the Friends for Life CWD annual conference in Orlando each summer, and itās a great way for your son to meet other T1D kids and take a stake in his own health care. Staying on the pens for 3-6 months is a good idea IMO while you research the technology and learn how to handle manual dosing, in which you will always need proficiency, even when you switched to a pump/CGM. Weāve had the best luck with Dexcom sensors (I donāt have any experience with current generation of MedTronic CGMās). The CGM will not work while he is in the water, but he can swim with the sensor on his skin. Baseball should be fine. Iād encourage you to adopt the CGM early, the ability to remote monitor while he is at school, and at night will greatly increase your peace of mind, and as a single parent youāll need the help. We recently began using the NightScout Loop setup (Nightscout Overview - LoopDocs) which has worked beautifully for my daughterās BG control, and is something your might return to in 12 months or so when you are on top of the basics-I would not tangle with it now, but mention it because I wish I had adopted it sooner. Her A1C and standard deviation are both much better while āLoopingā. Constant grazing is tough, and in time, I hope you can teach him the benefits of fewer meals/boluses. Give your self a pat on the back for being as proactive as you are, and be patient with yourself as you build the foundation for your sonās care.
Hi Marissa, I also have boy who plays baseball, soccer and flag football, he wears his DEXCOM religiously, using Pens now but moving to Omnipod soonā¦my son has adhesive allergy controlled well by Flonase to skin.
Some additional thoughts
Dexcom has a use group on Facebook that has been extremely helpfulā¦many tricks to getting it to stick longer and also that you can get it to last more than the 7 days (very helpful with kids!) .
Popcorn is our go to low carb snackā¦
Parent Type One support groups on Facebook.
Food is key - cereal and granola bars, pizza and restaurant food spikes us way high and we need like 6 times the amount of insulin. A Food spike is not immediately dangerous and for us usually no Ketones but getting back in range safely can be tricky, Dexcom is big help here.
Sleep - we check overnight, most families with T1D report poor sleep.
Teenagers rarely meet thier A1C targets - talk with doc about it, punishing no help here, positive rewards can work better and teen to teen support like this site or Facebook , Snapchap, etc., key seems to be other teens who are doing well.
Therapist if they are open to it.
Double check everything w/your doc dont be afraid to speak up and ask a lot of questions!
Best of luck!!
Hi, my name is Dania and I am a student and a type 1 diabetic of six years. I am currently conducting research on the effects of type 1 diabetes on a childās self-confidence at school. I believe that we sometimes forget that the complications of type 1 diabetes can transcend physical effects, and I think it is important to analyze how type 1 diabetes can effect a childās mindset and behavior at school. I hope that this research can either help diabetic children better understand themselves or help parents better understand what their children may be facing.
I would really appreciate it if you and your child could take my survey linked below to help my research.
If you would like to have a copy of the research results, please provide your email address at the end of the survey, as I would LOVE to share the findings of my research with you! My ultimate goal is to help diabetic children get the help that they may need. The safety of my participants is of utmost importance to me, and no information that could possibly reveal the identity of anyone will be disclosed in my research, which may ultimately be published in a student journal.
Hi, my name is Dania and I am a high school student and a type 1 diabetic of six years. I am currently conducting research on the effects of type 1 diabetes on a childās self-confidence at school. I believe that we sometimes forget that the complications of type 1 diabetes can transcend physical effects, and I think it is important to analyze how type 1 diabetes can effect a childās mindset and behavior at school. I hope that this research can either help diabetic children better understand themselves or help parents better understand what their children may be facing.
I would really appreciate it if you and your child could take my survey linked below to help my research.
If you would like to have a copy of the research results, please provide your email address at the end of the survey, as I would LOVE to share the findings of my research with you! My ultimate goal is to help diabetic children get the help that they may need. The safety of my participants is of utmost importance to me, and no information that could possibly reveal the identity of anyone will be disclosed in my research, which may ultimately be published in a student journal.
Great idea! Thank you for doing this! My son dxād at 8, now 12 did not want anyone to see him get shot at school or check blood, it makes kids different and developmentally appropriate behavior is for kids to want to be the same. I am glad you are focusing on this. I will get my son to complete and it may take us a couple days.
My name is Brandon A. Denson. I can definitely understand the nervous, scary; I donāt know whatās next feeling. I was diagnosed in 2004 and had just turned 17 and was starting my senior year of high school. My mother was a single mother as well so I understand your pain. I was a little older than your son so I took on the responsibility of managing my T1D right away. I was always very active in sports and everything else, long as it didnāt require sitting down or being still lolā¦ I promised my mother the day of my diagnosis that I will be fine, weāll be fine.
14 years later I can honestly say living with this disease sucks because not only does your son have it but you do as well. It can be very stressful, tiring, and demanding. With all that being said it could be a million times worst. I wouldnāt trade living with T1D for anything. I have a voice and a platform to help and I intend to do just that. With the advancement of new and greater technologies it has made life for me living with T1D so much more easier and Iām sure for millions of others and families living with T1D as well. Your son can still grow up and be anything he wants to be in life. I had dreams growing up of playing college football, I was able to do that. After walking onto the Michigan State University football team I felt accomplished. Truth is told the hard work was just getting started. I figured if I could set goals, dreams, and aspirations I could literally do anything in the world.
Iāve been wearing an insulin pump for 13 years now and CGM for 5 years. They definitely make living with T1D very manageable beyond means. I honestly think itās at your own discretion, if you believe your son can handle using specific medical devices. Now days itās just like working a smart phone lolā¦ Your son has nothing to worry about and you donāt either. Heās going to grow up and do everything he wants to do in life. We live with T1D but it doesnāt define who we are or what weāre capable of doing. If you ever have any questions or concerns, feel free to reach out. Thanks in advance.
Best,
Brandon A. Denson
P.s ā When you travel make sure you have extra of everything that he uses daily, you can never have too much. Did you receive a Bag of Hope from JDRF???
@mbernard623 Hi Maria,
Sorry to hear about your son. I am also a single mother of 4 children. One on my sons was diagnosed after a bout with the flu when he was 8. That was 9 years ago. My son always played sports. Baseball was his favorite. Like your son, he played much of the year. It was a challenge but he had a lot of fun. He is now a junior in high school. He still plays baseball and will play in college. He uses the Omnipod and the Dexcom G5 cgm. The cgm would have been so helpful when he was younger to actually be able to see his blood sugar without having to have him constantly testing. I would highly recommend both.
I know at this point it all seems overwhelming. There is so much to learn. Forums like these are great and also local support groups. I still learn so much from othersā experiences.
Hang in there. Some days will be not so great, and other days you will feel like you are both handling it well. I still feel that way 9 years in.
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). Everything was a blur after thatā¦ I knew absolutely nothing about T1D. I do now!
