5 year old daughter diagonsed last week

Hi all! My 5-year-old daughter has been diagnosed with Type 1 diabetes just this week. We have started her on insulin - 2 units Apidra before breakfast/lunch/dinner and 4 units Lantus at night time. Today is Day 3 on insulin. My problem is that her readings are all over the place - early morning count is very low (69, 57) and she is particularly very hungry at this time. Throughout the day her numbers are ranging between 200-350. I am just so confused and overwhelmed about everything. Any help/support/advice? An additional note - I am from India.

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Welcome to the Club that No One Wants to Join, and Welcome to TuD! My now-13 year-old daughter was diagnosed with Type 1 when she was 11. The first few weeks after diagnosis are especially difficult because your child’s BG will be all over the map due to some of her beta cells producing endogenous insulin after they “rested” once she was administered injected insulin. I encourage you to stay in close contact with your daughter’s endocrinologist and/or diabetes “team” (on a daily basis if needed) during the early weeks, as daily adjustments to doses is often needed. You probably already know this, but you should keep plenty of fast-acting sources of glucose handy to treat lows. If I were you, I’d let my daughter eat as much as she wants, as her body was literally starving before she began treatment! Hang in there and hang around here; this Forum is a great source of information and support. You and your daughter will be in my thoughts!

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I highly recommend 2 books:

Type 1 Diabetes in Children, Adolescents, and Young Adults by Ragnar Hanas

AND

Think Like a Pancreas by Gary Scheiner

Take care!

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Thank you! I was a little reluctant to feed her often. But, your logic makes perfect sense. I will let her eat as much as she wants. I was allowing only salads. But, now I will add more proteins in between meals. Also, is it ok to give full cream milk? She was never fond of milk before diagnosis. But, she keeps asking it for now. One last question- how should I prepare her for school and what all should the school be aware off?

Do you have an endocrinologist or other doctors you are working with? I was diagnosed at age 9, and for the first two weeks my parents had daily (I think) contact with a doctor to adjust insulin doses, and we had appointments more frequently during the first year in order to touch base.

With today’s insulin regimens there really are no foods that are completely off-limits for diabetes. If you have access to one, a dietitian would be very helpful.

It is important that your daughter’s teachers are aware that she has diabetes, aware of the signs of a diabetes emergency (mostly low blood sugar, but also perhaps high), and that your daughter has access to her diabetes supplies and (since she is so young) and adult who can help her administer them when needed.

Good luck, and I agree with @rgcainmd - stick around this forum and ask any questions that you need to.

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Just be sure you are giving the correct amount of insulin to cover the carbs (minus the fiber count) that your daughter is eating. Full-fat milk or cream is great because the fat content slows down the absorption of carbs.

I am respectfully requesting that people resist chiming in about low-carb diets, as low-carb is NOT what this newly-diagnosed child needs. Thank you.

Regarding preparation for returning to school, this is a tough one, as the rules, regulations, rights, accommodations, etc. are likely very different where I am in the U.S. from India. I’d suggest making sure your daughter’s teachers are educated about Type 1 Diabetes and know how to treat low blood glucose numbers immediately, including thorough instruction on how to administer emergency glucagon. If I were you, I’d keep my little girl home from school for at least a few more days while you research what can and should be provided for her while she is at school. Just take one day at a time for now, and get the book by Ragnar Hanas that I recommended for a good start. You and your daughter will get through this difficult time with support and education.

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@Priya1 Her numbers WILL level out, Priya. This “all over the map” phase will pass.
Hang there, and stay connected. It will get easier.
Love and hugs.

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@Jen Yes, I have been in touch with my endocrinologist and diabetes educator on a regular basis. They have offered great advice and helped adjust the insulin dosage, as required. Will be meeting the docs today to figure out more.

Thanks for all the advice about the school part. I plan to put together a checklist/dos & don’ts for her school. I just hope my daughter doesn’t feel too left out. Let’s see how things progress.

This forum is a great place with all you lovely people around. Will be interacting often. Thanks! :slightly_smiling_face:

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@Linda_G thanks for responding. It is great to know that her numbers wil settle down soon. I soo freak out when I see 300, 350, 450!! It scares me to death! Hope all will be better soon!

Priya, your doctor and especially your CDE will be the best guides in the near term. Here are some things to understand. It is important to get the blood sugar down, but likely until everyone gets things under control, your doctors may be more concerned with lows than highs so long as you are checking regularly and know when to get to the hospital if needed. I agree highs are very scary but lows can be even more scary if you are not well trained. So I am just guessing.

Here is a really great thing, that I can tell you after 42 years, it gets better. You will not believe this for a bit, but it will get better. Please remember this.during the next few days when things seem so difficult and welcome to our community. Let us know how we can help.

This is a rough ride, but the ride gets easier, please keep that in mind.

rick

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Hi @Priya1.

I have three children. My middle child, Caleb, is currently 13. He was diagnosed w type 1 when he was three. I’m sorry that your daughter was diagnosed. It’s completely understandable that you are overwhelmed. I know I was and to be honest, I didn’t realize the extent to which I was overwhelmed until years later when I could more objectively reflect upon those early days, weeks and months.

Every person and family living with diabetes has choices to make which will impact how you treat it. In general, the advice we were given and mostly abide by is to lead a normal life, and work diabetes into it. That includes diet. Since Caleb was diagnosed, I’ve become more knowledgable about nutrition. I always tried to make healthy choices for my family, and even moreso after Caleb’s diagnosis. But diabetes doesn’t dictate what we eat. Caleb eats as everyone else in the family does and that extends well beyond salads. :slight_smile:

What was helpful for us at diagnosis was to get into routines and stick to them. Ours was pretty rigid, which I don’t necessarily recommend, but some level of consistency I do recommend. Caleb ate 50 carbs for every meal and ate them at the same time every day. I spoke with his endocrine team daily to review bgs and doses and make adjustments. Caleb’s bgs were pretty fantastic with this method.

There are a lot of variables to consider when managing diabetes so the fewer you deal with at once, the easier it can be - thus my suggestion for consistency as much as possible to start. You will probably find that all carbohydrates do not respond the same for insulin dosing. For Caleb, pizza, french fries or ice cream are things we cannot just dose for because they impact his blood sugar over an extended period of time, different than bread, rice, potatoes, etc.

So although things will get easier as you identify and understand the different variables, it will always be something to juggle. I had the misunderstanding that when people said it would get easier or things would level out that things would be easy and his blood sugars would mostly be in range. It takes continued effort and reassessment, so don’t think you’re doing something wrong if you continue to see lows and highs, but it should be easier to deal with and manage and even expect at times.

Please continue to ask questions. I remember how isolated I felt and also how comforted I was by people I found online in communities like TuDiabetes.

My best,
Lorraine

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I second the opion of rgcainmd. These two recommended books were essential for the first few years! My son had a terrific endo team but I learned more from the books then the endo team had time to teach me. My son was diagnosed at 7.

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When my daughter was diagnosed with T1D diabetes I said we will simply not go out and do fun things. Ever. After a few weeks we simply picked up our “old” life again. We go to family parties, we go to the beach, we go to attraction parks, we go to McDonalds. We do pretty much what other families do. Next week we are going to a massive Tamil birthday party. We will bring along some low and zero carb drinks just in case. But we are not going to let T1D spoil the fun!

Reading books, getting blood sugar levels under control is important, but their is more to life than just diabetes. After a while things will become easier, and in a year she may get a pump, that will really simplify things. Although Cailyn’s sugars do bounce around every now and then, she is perfectly healthy and happy.

T1D is no fun, but it is not the end of the world.

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@Pieter_Jan_de_Ruijte I too have similar feelings at this time. I wonder if we go out, what will we feed her, how will we administer insulin, etc. I am very worried about school too - the fear that she may feel left out, she may be bullied as so on. But, I am in constant touch with my diabetes educator and the interactions with her make me feel a lot more in control. Plus, interacting with all you guys on TuDiabetes adds up to my confidence level. Thanks for all your support. Will keep interacting on this community and I am sure I will help my daughter fight it out!

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@Yifat and @rgcainmd I have already ordered these books and hope to learn a lot more about the condition.

@Lorraine thank you! I will keep interacting and asking questions.

@rgcainmd
Thanks for the book suggestions!
I would love for you to add them to the D Reads list in the community forum if you have not already! Thanks so much!

Best! Cynthia

Hello Priya1.
I am simultaneously so happy and devastated that you have found our page. I just wanted to welcome you, say hello and assure you that your sweet girl will grow to be a healthy, strong and confident person.

I was not diagnosed with Type 1 until the age of 19, I went for 18 years without feeling I needed a community of support and care. By connecting here at TuD, you are already a million steps ahead, surrounded by people that have walked this journey and want nothing more than to support, comfort and solve with you. We are here for you.

Numbers bouncing is so frustrating. Perhaps the most frustrating piece to diabetes. Patience can be hard to find in these times. Be gentle with yourself and remember to celebrate the good moments. Often, it can be too much to even hope for a good days of numbers, Take the moments, take lots of breaths and conquer the next. The work is hard, but we are here for you.

How often and when are you able to test? You are definitely in the correct way of thinking with healthful meals and protein. Protein is much slower to digest and may cause increased blood sugars much later on. Complex foods and meals are much more challenging @Lorraine mentioned above. There are so many variables digesting at different times. I was wondering if the milk craving is simply from the extra thirst that comes to all of us with an increase in blood sugar?

Please check in often and ask questions. We are all here for you and your daughter. Hugs.

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It’s natural to feel overwhelmed–you’ll get the hang of it. The most important thing to keep in mind is your daughter is still the same wonderful little girl she was two weeks ago. She’s still growing, learning, laughing and playing. Her pancreas is not functioning correctly, that’s all.

The most helpful thing for me when I was first diagnosed was to learn how to carb count. Match that knowledge with feeding her the food she needs to grow and thrive and you’re well on your way. Don’t be too hard on yourself that her blood glucose is elevated. It takes a while to get a handle on that.

Do not let what happened yesterday bother you today. If there is something to learn, then apply it. Otherwise, forget it. Save your energy for the things you can change today.

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Your diabetic team are going to be your best friend for a while, If you child is low of a morning, they may suggest either splitting the long acting insulin to twice a day and/ or reduce the amount.

It is going to be a steep learning curve, this may help
A workbook (the certificate ran out but the site is safe)
http://www.bd.com/us/diabetes/download/insulin_adjustment_workbook_complete.pdf

Sick day rules, it’s better to get your head around this now, rather than in a panic at 3am with your child throwing up from a virus and the numbers all over the place from the illness.

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