Need guidance, how to handle the condition
Hello @Ayat welcome to our self-help forum. We are not professionals here, so we cant give you medical advice, but many of us here have type 1 or are taking care of someone with Type 1 diabetes.
Type 1 diabetes is an autoimmune system disorder, where our own autoimmune system has destroyed the insulin producing cells (called beta cells). We need insulin to survive. Without insulin, the dissolved sugar in our blood increases and our muscles starve because muscles cannot use this blood glucose without insulin.
Taking insulin is a balancing act of how many carbohydrates you eat, how much activity such as exercise you are getting and how much insulin you inject (typically called units, there are 100 units of insulin per milliliter)
taking insulin is tricky, too little and your blood sugar goes up, too much and your blood sugar goes down. Deciding how much insulin to take requires experience and practice. I have had 43 years of practice now, and my blood sugar can get to 500 mg/dL if I make a mistake.
If you have access to the book “Think Like a Pancreas” i have found it to be a great overall guide on sugar and insulin. I recommend it if you can get it.
I hope you have access to medical professionals in your area to help you deal with learning on making the decisions necessary for reasonable control. No one has perfect control.
Many doctors prefer if you do not have any lows, low blood sugar is dangerous in the short term. I believe that high blood sugar should be managed as best as you can without causing serious lows. Doctors are ALWAYS conservative at first.
In the most basic form possible: Insulin makes your blood sugar go down, eating (or drinking) carbohydrates makes your blood sugar go up.
Many doctors will tell you to eat a certain amount of carbohydrates per meal and tell you how much and what kind of insulin to take. At some point you will learn that you can influence the outcomes of blood sugar by adding or subtracting carbohydrates, or adding exercise like a walk or something more vigorous, to help you. By the end of this year you will be expert enough to add and subtract insulin for certain foods as well.
I hope this small explanation helps you. I hope you continue to ask questions and use the forum to help on this journey.
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@Ayat Welcome Riaz to this Community Forum.
@joe has provided a good introduction to the T1 DM basics and right now I can’t add anything more. A 2.5 year old child what experience at first what appear to be high blood sugar that fluctuates a lot, and your doctor will work with you adjusting her insulin dose to help her improve - it will take a while.
I suggest that you watch her closely, observe her and write down what you notice and share this information with her medical provider. You are welcome to share here her progress and some people here may offer suggestions about how they helped their children.
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Hi and welcome to the forum. I second reading the book Think Like a Pancreas. I was diagnosed at age 3 and celebrated 60 years with Type1 last year. I read the book for the first time a couple of years ago and despite how long I’ve had diabetes, I still learned some new things!
There are lots of tools at your disposal that were not available until I was coming out of college - not to mention new learnings. So take a deep breath as you begin the never-ending learning process. It will be challenging but you will get there.
And though your daughter is only 2 right now, take a look at camps for kids with diabetes - minimum age starts around 6 but varies, and she’ll be there before you know it.
Parents often want to find other parents with kids who have Type1: this forum is terrific as an online resources but locally, check with your doctor’s office: while they can’t give out names of other families due to HIPAA, they should be able to share yours if you request it. You also may make some connections in the waiting room! And there may be diabetes related events in your area - check the Resources tab at the top of the page and enter your area, and you might find some treasures.
Hi @Ayat ,
I am sorry to hear of this diagnosis. It is so difficult with the tiny type 1s. My son was diagnosed at 14 months. Hi is 5 now. It is do-able. It is difficult.
From your note, I think your daughter was very recently diagnosed. I imagine everything feels challenging, and perhaps, like you’re not doing a very good job at managing it. IT’S OKAY RIGHT NOW. Your job, right at the beginning, is to keep your child alive and avoid scary lows. This means, no loss of consciousness and no seizures. You want to avoid delays in brain development. You will learn so much in the coming months, and then your goals will change.
The following is my POV. As others have said, you’ll need to discuss this with your daughter’s endocrinology team.
The tools you have to manage insulin for a toddler are a challenge. Does she have a CGM? With CGM, you can avoid the scary lows. This is wonderful. However, with CGM, you will get a report of how frequent and how high the blood glucose values get. It’s OK. The frequent high BGs are normal for a small and unpredictable child.
Are you using injections in 0.5 units at a time? With injections, you don’t have the tools you need to fine tune the basal rates. Tiny children have extremely varied basal needs throughout the day and night. A pump can help with this. With injections, the rapid acting insulin can only dose down to the half-unit. The mealtime bolus dose often needs to be smaller than you can give with a pen or syringe. A pump can accurately delivery tiny doses.
The result: your daughter’s BGs will need to run high, because you don’t have the tools you need to do smaller, precise doses. It often takes some time to get a pump. A pump will help immensely, even though it will still be difficult.
While you are waiting: give yourself grace. Try to get some rest. Learn as much as you can. Ask your pediatric endo team Qs and think about what kind of pump matches your parenting style and personality.
Please, also, if you are able: find in-person families to walk this road alongside with. You can find other parents at JDRF summits or chapter meetings, Friends for Life conferences, or sometimes there are local Facebook communities that plan meet-ups.
It will be hard, but it is possible to live well with this. My son is healthy and thriving. He likes his diabetes. That’s a funny thing to say. It means that we, as parents, can take the burden, as we should for this age. My partner and I are doing well. We sleep at night. We have support and the tech and we live our lives. It took a while to get here, and that’s OK.
Good luck. LMK if you need anything. I have learned so much in these 4 years.
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Hi. I’m new to the forum. This chat caught my eye because my 2 year old son was newly diagnosed on 1/15/24. You seem so knowledgeable. Does your child have a tubeless pump? At our next class visit at the end of this month they signed us up for a class about it. I wasn’t sure if at his young age it would hurt him more to get poked periodically through the pump vs. the insulin pen pokes. Please let me know what you think!
Thank you so much for your time.
Jen
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Our dietitian suggested fair life milk because it is lower in carbs and sugar. My son is down to only 2 bottles a day so I give him that at night and normal whole milk when he wakes up. Having the monitor on his arm is SO helpful because he doesn’t like the finger pokes. We had that put on him 2 days after my son was home from the hospital after being diagnosed.
Hi @Jenna7890 and welcome to the forum. I was diagnosed at age 3 and have had diabetes for just over 60 years. The needles used way back then were not the fine gauge ones we have now - it was probably painful but the pain was only momentary and I got used to it. I won’t say your son will not feel an injection but hopefully it will not be too bad for him: some people numb the site with ice, or a numbing solution you can get at a medical supply store or pharmacy.
Pumps are great, and I use the Omnipod5 which is tubeless. Keep in mind, whether you use a tubed or tubeless pump it is possible the child could pull it off or out, the tubing could snag on something, or a pod could be dislodged in rough-and-tumble play - any of which scenarios would leave him without insulin, which could cause his blood sugar to rise rapidly. With injections - which many people do fine on - you know the insulin will stay in. There are small children on pumps - just know that you will need to be extremely vigilant.
All pumps use an “”infusion set”. This is typically a small plastic tube that is just under the skin. The infusion set has a steel needle but after the set is in (automatically by the pump or by “inserter device”) the needle retracts. The set is worn like a band aid.
The pump then has a path to pump insulin under the skin through this infusion set. There are no other pokes from the pump other than the first one. Infusion sets last 3 days for a Omnipod and most other pumps. You simply rip them off (again, like a band aid) after 3 days and set a new one.
For pods the set is under the pod, it still has a tube but it is covered by the pod. For other pumps the set and pump are separate.
I’ve been pumping many years and it gives me the control I prefer. Multiple daily injections work as well. Please call omnipod and ask them to send you an empty pod. You can even stick it on him (it’s empty) and see if the size will be ok.
Thank you so much!! The information you’ve provided is very very helpful!!! I truly appreciate it!
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I thought I’d respond as we have transitioned recently from the pen to an Omnipod pump and that question you raise is tricky. But you’ll find the right option for your little one.
The biggest challenge was that the pen was a routine of needle and then eating. Whereas the changing of the pump was less frequent and changed every three days. So this made changing the pump quite traumatic at first. But, tonight’s change was the bed to date. No complaining whatsoever when changing it, only a slight upset when the pump clicked (and Catheter administered).
Technically both are painful to a degree - whether it’s a prick of a needle or poke. For us, as parents the pump gave us greater flexibility around management and administration of insulin and a biggie was overall better management of his numbers and being in target - almost immediately (as the pen couldn’t deliver the smaller doses and our toddler loves eating snacks over 10 carbs).
Know that whatever the decision to make, it’s the best decision and you’re doing your best.
Hi again @Ayat . In your post you had copied a question about what type of milk to give your daughter. I grew up drinking whole cow’s milk, then in my 20s my doctor said skim would be better due to the lower fat content. I don’t know that cow’s milk is worse or better than any others - the main issue with any milk may be covering the carbs and watching the fat content and a nutritionist can give you guidance on the best options.
There are many options now for people who don’t want to use animal products or have a sensitivity to them (I switched to coconut milk a while ago).
Hi! Thanks for the information! You’re definitely right about the pod being able to administer the smaller doses. After our informational meeting about the omnipod we decided to hold off on it for now. There were a few reasons we didn’t go with the pod. But the biggest one is having to shut the pod off when my toddler is going to be active. He’s very active at daycare and always running about which can bring the BG down. So we thought it best for now to not get it. Also my son is so skinny and little. Not any fat except a little on his thighs where it could easily be pulled off. Luckily he’s recovering fast from the “pokey poke’s” as we call them. Any other tips you can think of I would love. My son likes to snack a lot as well. It’s hard to find low carb snacks.
P.S. my son also likes to snack over 10carbs. So we typically are giving a half dose insulin for that.