I’m so scared I’m not gonna do things right for my daughter. I question myself a lot if I’m doing the right thing when her sugar is to high or to low.
Hi @Mommaof6. Your fears are understandable and I’m sure universal. If you don’t have them yet, check your insurance for board certified pediatric endocrinologist who specializes in diabetes (endo covers a range of conditions).
A practice with a Diabetes Nurse Educator (DNE) is ideal as they may spend more time with you than the physician and will train you and your daughter. Treating diabetes involves making some adjustments as your doctor works with you to determine the amount of background or basal insulin she needs, and how much she needs to cover her meals.
I find using a tracker such as Mynetdiary is invaluable - the more vigilant I am about recording meals/snacks, exercise and other info, the more helpful it is for me and my doctor when we are considering whether to “tweak” my regimen.
It’s new and scary, but some of us on the forum were diagnosed very young (in my case 3) and have several decades of age and diabetes experience with us.
There is a book called Think Like a Pancreas, and the most recent edition was published just a few weeks ago. While you should work closely with your endo to determine specific details for your daughter, the book will help you see what goes into the decisions so as you become more experienced you will understand how to make adjustments yourself - something we all learn to do.
I’ve been on insulin for 50+ years, and that’s nothing compared with some on this forum. If you do a search for “parents” you may find some helpful discussions and support.
Wishing you the best.
Natasha, I’m sorry to hear about your daughter’s diagnosis; what a jolt to both your worlds! Dorie has made some excellent suggestions. In addition to this forum, you may want to look up jdrf.org and see if there is a chapter near you. The one in Greater Missouri and Southern Illinois assigns outreach volunteers to newly diagnosed families which gives you an opportunity to connect with another parent for information and support. Kids are resilient, and your daughter may well surprise you with her ability to figure out how to live with this illness with your help and love. Good luck to you both.
@wadawabbit Sadly we don’t have any health insurance and I’m trying to get some lined up. I will definitely check the book out. Thanks so much for your encouragement.
@rfk2 I will definitely look into that. My poor baby is so confused and I’m just a mess. Thanks so much for you kind words.
Diabetes is a lot to absorb. Keep working with your doctor and diabetes educator, and eventually, things will start to come together for both of you.Thoughts & prayers for both of you.
As you are learning how her body responds to adjustments (really always) it’s good to use a continuous glucose monitor, or CGM, such as ones made by Dexcom (my choice) or Medtronic/Minimed. They can be used with or without an insulin pump, and will alert you and your daughter to highs and lows. Depending on your financial situation another option is the Freestlye Libre. Out of pocket costs are much less, but - and this is a big “but” - it does not have alarms.
Many of us find them helpful if not invaluable, but some of us on this forum had diabetes for years (decades) before there were BG meters, much less CGMS. With experience your child will learn to recognize symptoms of low and high blood sugar and how to respond. With the Freestyle you simply swipe the receiver across the sensor and the reading pops up - no need to do fingersticks (which might involve waking your child overnight).
By your ID it appears you have what I would call a large family. Family support is important, and you may find her brothers and sisters notice signs of a low coming on. Even young kids can be observant and may be able to help.
Thanks so much @rfk2
@wadawabbit I will have to look into that cause her poor fingers look so bad yes we’re a large family I’m trying to tell her siblings what to look for.
Be sure to follow your Doc’s instructions for finger sticks. You and she will learn the SIDES of her fingers usually hurt less to stick. Be sure to rotate fingers for sticking.
Share what area you live in. Near what large city, etc for one of us to point you toward help with local JDRF chapter or similar support group. I am T2D on pump and CGM. Support groups helped me.
@987jaj I’m doing everything they’ve told me to do. We live in Hawkins county TN the nearest big city would be Bristol TN
With this information, an East TN chapter of ADA or JDRF would be in your neighborhood, right? Knoxville included?
I have some other contacts. I will let you know what they share. Do you have specific questions for the group?
@987jaj yes east TN is in my area. I have tons of questions.
What’s the best foods for her to eat that will fill her up?
Why does her sugar keep going up and down so much?
Should I give her a correction dose when her sugar is high or just 8 oz of water and make her walk?
One of the keys to managing diabetes is determining the person’s insulin:carb ratio - that is, how many hands of carb each unit will cover. That varies by person and time of day as well as other factors, and as with many things it can take some tweaking to get it right - and even once that’s done it can change from time to time. So you will want to work with her doctor to determine what it should be. Once that’s in place, it’s less a matter of what to eat to fill her up, than making sure she - like all your kids - gets a good variety of healthy foods for nutrition - and yes, she can eat things simply because she enjoys then as long as she covers then with insulin.
There are many reasons why blood sugar goes high or low. In addition to matching what she gets for meals and snacks, there is also basal or background insulin whose dosages need to be determined - and that can vary as well. Again, her doctor will work with you to set them up and tweak them as necessary. Part of the challenge with determining rates is, since she in is new to diabetes her body may still be making some amount of insulin on its own.
I imagine you’re feeling overwhelmed by this - it is a lot to take in - but that’s why you’ll be working closely with her doctor. You’ve probably heard about health BG ranges and it’s scary when your child’s numbers are way above or below - the low numbers are particularly worrisome because they can result in an emergency more quickly than higher ones - so as I believe has already been mentioned, you’ll be learning to recognize symptoms of low and highs and learn to manage them.
As far as managing highs, that’s something her doctor should go over with you in detail. In the forum we can’t really give specific instructions about what to do, but rather we share our experience and recommendations to discuss with your doctor. I personally have found that if my blood sugar is high I do need to drink water or sugar free drinks in order for the insulin to work. And I have to be careful to resist the temptation to stack on more insulin if I’ve taken what I calculate I need to correct a high (we have determined what should work for me) if it doesn’t seem to be coming down. Waiting for it to correct can be like watching paint dry, and for me it can take literally a couple of hours before I see even a few points’ drop. It can be a frustratingly slow process and I’ve learned that taking more insulin is Not like driving my car. If I need to go faster I hit the gas and that surge of gas works almost instantaneously. Insulin takes the time it takes, and you have to wait - if you continue to add more in, when blood sugar does drop it can crash. Having said that, if you are worried, call her doctor for instructions.
You may not believe this since everything is so new, but you and your doctor will find a basal insulin setting/s and corrections that work for her even if she is in the honeymoon phase, and eventually you’ll be more comfortable with making corrections. In the meantime, work closely with her doctor, who should give you guidelines on exercise as well. I was diagnosed in 1963 and the prevailing wisdom for decades was to exercise to help bring down high numbers. That is no longer recommended for very high numbers - check with your doctor because I don’t know what that amounts to for kids. And if you give insulin AND exercise that will affect her resulting numbers as well.
@wadawabbit we don’t even have a doctor yet that’s the scary thing. She literally just got released from the hospital a few days ago. I’m so stressed about everything. I have to call to find a doctor Monday and try to get her some type of insurance. When she sleeps I sit and cry and just watch her. I feel so guilty like I should’ve caught this before she got where she’s at. I greatly appreciate all the information.
My apologies. Hopefully they have you a nurse line or something along those lines to call for instruction as you search for a doctor to manage her care. And I know it’s easy for me to say, but try not to feel guilty. Symptoms of diabetes can be mistaken for other, minor things - I can’t recall the estimates of people who have diabetes - insulin dependent or not - who are not diagnosed. So try to take a deep breath and concentrate on looking forward. None of us gets it right 100% of the time, but we learn and do our best.
Oh - at one point I think you mentioned pain from doing fingersticks - many of the lancet devices in use now are adjustable to you can set the depth to a shallow level - that might help.
@wadawabbit yes they gave me a nurse line but I have to call and leave a message and it takes hrs for them to get back to me. I found the adjustments on her unit and turned it down so that seems to help.
See, you are learning already!
Your questions and I will try to answer each one later.
An RN with a Certified Diabetes Educator (CDE) credential once told me trying to figure out D is a SWAG. SWAG = Scientific Wise Assuming Guess. Others may change the ‘A’ word in SWAG. I hope you get the picture. Example, due to meetings, I needed to eat out three nights in a row at the same Italian joint. I ordered exactly the same thing each evening. I had been on my insulin pump for a few months at the time. I did the insulin coverage of my meal the same way each time. The results were one time HIGH, one time LOW, and the last time just right. I asked the nurse CDE at my endocrinologist’s office on my next visit. Her response was SWAG.
What’s the best foods for her to eat that will fill her up? Ask her and coach her. Her food choices may vary. Her body’s responses may vary. Get her involved. The two of you are a team now. Get her to lead.
Why does her sugar keep going up and down so much? She is a young lady and many variables play with how her sugar behaves. Time since last meal, fat in meal, emotions, activity, growth hormones, etc. There are too many variables for even the best long time diabetics to be perfect in their management. Something is always slipping between the cracks.
Should I give her a correction dose when her sugar is high or just 8 oz of water and make her walk? Discuss with her. How long has it been since the last meal? Will she be going outside to play soon? How are her emotions, glad, sad, mad, etc? Work together as a team on this one.
A story about a first grade child with D from years ago. The child was a transfer student in the middle of the year. Day one at the new school and it was time for morning recess. The young child gets out a meter and does a finger stick. The child then pulls out a vial, syringe, and alcohol wipe (before insulin pens) and proceeds to give a correction dose of insulin. The teach freaked, involved principal and other officials causing the child to be permanently expelled for possession of drug paraphernalia. The parents ended up suing the school, principal, teacher, and others for an ADA violation. Bottom line, point one is involve the school (I know it is summer and schools are doing crazy things because of C-19) and the school nurse if there is one. Point two, even a first grader can be independent with self care.
- If the doc on Monday talks continuous glucose monitor (CGM), go for the Dexcom G6. Read more at Dexcom dot com.
- It the doc goes FAST toward an insulin pump, check out the Tandem Diabetes Care t:Slim with Control IQ technology. This insulin pump is approved by the FDA for ages 6 years and up. Check out this link about kids and pumping. The Control IQ technology watches the CGM and adjusts the insulin behind the scene. Counting carbs and enter carbs into the pump with meals and snacks is still required.
Great job, Dorie. I learn things from you just about every post you make.