Hello, my 8 year old daughter was just diagnosed Feb 26th. It’s been a whirlwind of a week and half and things are so different. I truly feel like I am caring for a newborn again. I don’t sleep, the worry, guilt, and questions are all consuming. My daughter is very positive about the diagnosis, and seems to be acclimating decently to her new lifestyle. I have many many questions, but for now I will ask 4.
How long before you/your child was able to get on a pump or CGM? Is there a standard?
It seems as though most of the people I know who’s child was diagnosed with T1D works in healthcare. Just curious, are you or your parent/caregiver a healthcare worker of some sort?
What is your solution for sharps when out and about? Assuming there isn’t access to a sharps box near by.
Free/high protein snacks- Any advice on non-refrigerated foods that are “free” snacks? I want to send a few “free” snacks for my daughter at school in case she gets hungry and it’s not time for a carb snack. Any suggestions welcome!
Hey there! A whirlwind is to be expected not only the first year but she will go through phases. Some will be amazing and others not. I have been a diabetic for a little over 3 years. Nor me or my mother are caregivers. I have learned about my disease and how my body reacts to different things and that will help a great deal. When I am out and about I used to use a pill bottle for my on the go sharps container. I just recently received a ultigaurd safe pack. It’s a little sharps container that also dispenses clean needles. It isn’t too big and fits right in my purse. As for the “free” snacks cheese, meat, and veggies are all very good foods that are carb free and great snacks. Please check back in and let me know if this was in any way helpful or any other questions we may be able to help you with
All carbs aren’t created equal, so what you’ll find is even though nuts have carbs they usually don’t affect blood glucose in the same way that an equal amount of carbs from bread or pasta would.
So, I’d say an awesome non-fridge snack would be almonds and/or other nuts - you more than likely wouldn’t really need to count carbs for those as their glycemic impact is so minimal.
I am Luisa, my son is 11 and was diagnosed May of last year. My son just got his CGM last night, we didn’t really talk about it until about 6 months after the diagnosis, I am sure this can vary based on the need, doctor etc. Nor my sons father or I work in the healthcare industry. I have seen on Amazon travel size sharps containers, I was able to find one locally. Things will start to make more sense as the time goes by, some days will be harder than others but one thing I have learned after reading many posts on here is that tools available today have not always been, and those who were diagnosed before all this new technology was available have lived fulfilling lives and are living to tell the story as you learn more and more you will start to gain clarity.
there is no time requirement for a pump, it depends on the person and the caregivers and the abilities and opinions of the endo. A pump is not automatic (even the new ones) and require a lot of button pushing and extra trouble shooting. It can be a great tool and it can add extra stress if you, the endo, or your daughter isn’t ready.
I don’t know how this correlates, but I am an engineer working in the pharmaceutical industry.
a pencil case or other kit where you are storing the pens/syringes/ paraphernalia makes a good temporary storage solution. It’s okay to re-cap your own sharps to keep them from poking you through the case. I’ve used empty soda bottles, and the little compartment in my backpack as well.
nuts, mostly would be a my recommendation. it’s more of a fat but it can keep you feeling full and they don’t always come packed with carbs like peanut butter and crackers.
For question number 2, when I wrote this question out, every child I knew that had T1D was a child to a healthcare worker. I was only aware of about 10 kids with it, and all of them had mom’s who were nurses or CNA’s. I am a nurse so I wasn’t sure if it was just that I knew a lot of healthcare professionals, or if there was some odd correlation.
Interesting Quinn @Gmomma09 but I hope there isn’t any correlation being envisioned that we “catch” T1D from a relative who works in healthcare.
I got my first pump in my 35th year after diagnosis. OK, I did turn down the opportunity to test the pump worn as a backpack [the size of my three litre CamelBak] about 20 - 25 years after diagnosis.
My youngest sister became a Doctor of Nursing [Obstetrics] many years after my diagnosis and our daughter, born more than ten years after my diagnosis has been a paramedic for 30 years and is now in candacy for her Doctor of Medicine [not MD] Degree.
Sharps; when I used pens the case in which I carried my refillable pen about had room for three pen-needles and an extra cartridge. I just put used needles in the slot from which I took the new one. In later years I’ve used an empty pill bottle.
There are not any “free foods” other than a celery stick - not more than one. But my favorite “minimal carb” snack is nuts, then cheeze.
Hi! I was diagnosed just over a year ago when I was 15. The standard I heard for getting a pump was 6 months. My endo let me get one after 3 months because I’m very mature for my age and I was completely certain I wanted one right away. I was independant from my parents in managing my diabetes within a month. However, it’s really important to consider your options before getting a pump. It takes a lot more patience than pens or syringes. There are alarms at every hour of the day and you can’t hide being diabetic. Everyone sees it, everyone knows, everyone will ask. Having just a CGM is a lot easier to deal with. Your child has to be prepared for that before you get a pump. Ok, now the more important part. Learn about the 5 stages of grief. Accept it slowly. Go at your own pace. And take some time with your child where you don’t mention diabetes at all. You will have all the time in the world to deal with this, don’t try to do it all right now. Reach out to people who love you, you got this!
Welcome, and hang in there … my daughter was diagnosed 2 years ago and is now 9 yo. If your daughter would like a friend to Skype or FaceTime with, just reach out With regard to questions:
Gwen, my daugher, was able to get on a pump around 6 months after diagnosis. I believe they wanted us to get an understanding of managing the disease first. Use of the pen/needles really does that well.
Not in healthcare
Bring a plastic bottle with lid
My kid (she was weird) liked Vienna Sausages. Also used 1/2 protein bars, and string cheese lasts awhile without cooling (hours). 2 tb pnut butter and 3 squares grahams are under 15 carbs, so essentially free.
You ask if it’s common for Type 1 diabetics to be related to health care professionals. I have a sister that was a nurse for many years, though she eventually got into another line of work, but was still active as a Lamaze natural childbirth teacher and labor coach.
BUT I was diagnosed at age 5 in 1956, and she became a nurse when she completed college in 1967, so we did it in reverse order. A
I was diagnosed right before I turned 7 and I think I adjusted to it quicker than my parents, too. As I remember it, my frustration over their fumbling with the glucometer was what got me over my fear of needles enough to check my own blood sugar. Kids are resilient and it will get easier in time. But to answer your questions.
I’m 31 and I still don’t have a pump or CGM, though I’m considering getting a CGM if I can find one I like. There’s no right or wrong time; it depends on your daughter’s health needs and her satisfaction with her quality of life.
My dad’s a doctor, but it was actually my mom, an artist, who figured out what was wrong and brought me to see my pediatrician. My mom also never left the house without emergency snacks, but twice I had severe hypoglycemic episodes when Dad-the-Doctor ignored the early signs and/or didn’t bring any food with us.
I recap my syringes, remove the plunger and snap it in half, and then put everything back in my bag until I get home. My lancets automatically recap themselves, so those just go back into my bag. I keep all my diabetes things in their own little purse/fanny pack kind of thing and I have a specific pocket for used sharps. When I’m traveling I keep an empty plastic bottle in my room and use that.
As others have said, nuts are your best bet for non-refrigerated “freebies.” Carrots and celery would also be ok for short periods, I guess. Roasted chickpeas would probably be good, too, but the flavored ones sold in grocery stores might have carbs in the flavoring, so I would either check the nutrition labels carefully or make them yourself. Dennis is right that the only true freebies are celery and water, but nuts, meats, and many vegetables and cheeses are close enough.
@gmomma09 My 9 year old daughter was diagnosed on the 1st day of school this past September. The diagnosis definitely felt 10 times worse than the blizzard that hit Boston yesterday. It helps to keep things in perspective. Many other parents are leaving the hospital with devastating news about their children. Thankfully, T1D is manageable, albeit worrisome and consuming. Glad to hear your girl is adjusting well.
1.) My daughter has chosen to steer clear of pumps & techie stuff. There is a summit this Saturday in Boston which I am taking her to and was hoping she may meet other kids that have chosen to have one so she can see what it’s like. Our endo says it has to be her decision and I completely agree.
2.) My husband and I work in the technology field, not in healthcare.
3.) We use the insulin pen (a gift from our Diabetes Nurse Educator). I recap the needle and replace the outside cover. I know it’s used since the paper cover has been removed, and then use our sharps cont. at home. I have noticed sharps bins in the bathrooms at Simon malls.
4.) My daughter doesn’t care for nuts, so we use popcorn, celery & carrot sticks.
Blessings to you and your family. You’ve got this!
Best wishes to you and your family on this journey.
I am an Outreach Manager with JDRF. I suggest that you reach out to your local chapter. You can find them at www.jdrf.org. They provide resources that support and opportunities to meet others impacted by type one diabetes (T1D).
Again, I wish you all the best!
My 10-year-old grandson was diagnosed 4 years ago. We took a class on pumps the first year, but he was afraid of the insertion application and did not want a pump. He has been on the Dexcom CGM for about 3 years, and our family cannot imagine not having this tool to help manage his blood glucose. I would highly recommend this device for anyone with T1D. My grandson reluctantly began using an Omnipod pump over 1 year ago. He now appreciates the convenience and flexibility of dosing without needles afforded by the pump (but still does not like the pod install every 3 days, but tolerates it well). He eats cheese sticks as a snack, but like all kids, he likes carb snacks. With the pump, it is easy to apply insulin for between meal carb snacks. The pump is more precise in its dose. He is small, so the one-half unit dose increments of needle applications is no longer a problem. Hope this helps.
My 6 year old granddaughter was diagnosed with T1D three weeks ago. It’s been a whirlwind. Fortunately, I’m also a T1D, but diagnosed at age 40, but my experiences have been valuable helping my daughter and her husband adjust to their new normal. As with all initial diagnoses, there’s a roller coaster of ups and downs and helping the school staff adjust to a high needs child. While there’s support through the hospital (although that’s another story), the parents are feeling a bit out there on their own.
When life settles for everyone, I’m hoping to help develop a protocol for newly diagnosed children in the school district. We developed a google spreadsheet for the nurse to log blood sugars throughout the day. We added protocols for dealing with highs and lows. That has been a lifesaver and should have been a tool suggested by either the medical or school staff. The parents are working with the school staff to develop a 504 plan, but it’s currently a work in progress.
I’ve been a T1D for 25 years, so have been able to relay my experiences with treating lows - not just with juice, but adding a protein and fat to sustain the BG. I’m hoping my daughter will join this forum so she can connect with other parents dealing with a T1D child.
My son is 5 and was diagnosed in march and I still get up at 2am like clockwork without an alarm to check his CGM(godsend). I still stress and constantly watch over him. Which at times gets him a bit frustrated.
we got his CGM 1 month after diagnosis. He was very scared but we made sure we watched video and educated ourselves. We used numbing creams and bought special stuff to remove the stickers so not to hurt him when removing. we wanted to make it easier and not scarey for him. We have not decided on a pump yet. He has said NO WAY and we are respecting his decision. I have hear of toddlers getting them as soon as they leave the hospital. I suggest you learn the old way syringes and blood glucose check well as even with the CGM and pumps there will be issues. We have had a few hiccups, but so far our new dexcom 6 is great! My sons CGM has helped us tremendously and we can travel knowing his numbers, Let him jump on his trampoline, ride his bike and do all the things my wild little guy does. We can look at his receiver and see if he needs a carb.
I do work in healthcare as a medical biller at home,but use to work in a lab setting for 18 years but my spouse transfered from a hospital setting to a pharma company.
For sharps I carry a old perrier water bottle In a backpack. we use a pen so they recap but I still remove them and throw them in the water bottle.
For free snacks. Ugh it depends on her carb ratio as to what is free. My son can do about 10 and under and not have any issue. I buy dehydrated fruit packets 5g (sprouts or whole foods) they have all sorts of fruits, Justins Pbutter or almond butter packets 6g. cheddar or plain popcorn ( i premeasure it in sandwhich bags. Carrot sticks, plum organic applesauce packets are 10g. I buy nutter butter cookies and 1 is 8g. for his snack at school the nurse has granola bars for PE days as he needs an extra carb before exercise and running. For his snack he takes one of the above. I also carry organic unsweetened juice EVERYWHERE. His school nurse also has extra snacks and juices for lows. gel frosting packet for emergency lows. I now carry as small backpack with my frio bag to keep his insulin cool it has all his supplies and snacks. Even if it is a quick run to the store. Freeze a gogurt as the organic ones at sprouts are only 8g also.
I wish you the best during this. We have our days where I sleep at the bottom of his bed because I want to watch his CGM to be sure his insulin brought him down from a high. or he had a low and I don’t want him to go to bed till he is at a certain point. I think the first week I was sleeping in his bed near him. (which is hard since he is a bed hog) I am still adapting and learning everyday and so is he. It is starting to be a habit and just a way of life.
as you learn more and more you will start to gain clarity.