Need help very bad

Newly Diagnosed
1

Sorry for the the capital letters, but my 1 year old daughter has been put on a pump after she was diagnosed with t1d just a few ago. Ever since then, her T1D has been very poorly managed surpassing 400 many times; so high the Dexcom wont even read it.

BUT THE DOCTOR REFUSES TO GO BACK TO PINS.

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The docter refuses to give us her Lantus dose and insulin and keep pushing to use the pump.
Im so sick of this. Is there any way I can report this to a higher level and get something done? The doctor now refuses to even take our phone calls.

Any suggestions would be appreicated.

2

If a doctor will not do what you need, then fire them.

Hello @beary16 welcome to TypeOneNation. I am sorry to hear about your daughters diagnosis. I have had type 1 for over 40 years.

You can make any kind of therapy work with effort. “Needles” Or MDI (multiple daily injections) or a pump. You can certainly make either work. I was in MDI for 27 years then switched to pumping because it was better, for me.

Your daughter will likely go through a thing called honeymoon where her sugar numbers will calm down for a little while. Your daughter will not break if she gets a high number. And lows are more dangerous than highs especially at this age.

I urge you to read “Think Like a Pancreas “. and if this doctor won’t take your calls to get in touch with a diabetes educator. The next year will be tough but if I can do it then truly anybody can as well. Good luck :four_leaf_clover:

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3

That’s really unprofessional and downright rude that the doctor isn’t taking your calls now. Is there a different doctor you can get in with for an urgent appointment? You can try asking a different doctor to switch your daughter back to injections, or you could ask them to tweak the basal insulin dosage settings. Right now, the pump isn’t helping as it should because the dosage settings are not correct for your daughters body. Everyone has different insulin needs and different insulin “profiles” when on an insulin pump. Maybe the doctor can look at the blood sugar graphs and make some adjustments to the dosing.

Good luck.

4

Hi @beary16. I’m astounded by your doctor’s completely unprofessional attitude. It’s bad enough they are not working with you to manage things, but refusing to take your calls is the last straw in my mind. As someone has already suggested, you have the option and the right to fire them pronto and find someone who is willing to treat you both with care and respect. If your current doctor is not board certified to manage diabetes in young children that’s what you need to look for.
As fit shots versus pumps - while pumps are considered the state of the art in diabetes management - especially when used in conjunction with a CGM - many people do well in shots and prefer them. And you can use a handheld receiver so you can still track her numbers. Whichever you use, the key is getting her basal insulin set, along with what she needs for meals. Many people have multiple basal rates for different times of day but I don’t know if that applies to infants. Using a pump with good rates in place can prevent the insulin peaks that come with injections and the need to keep to a strict feeding schedule, although she might be eating on a regular basis anyway.
Just some things to think about and discuss with a physician more qualified than the one you have now. The decision about whether to pump is a personal one, and your doctor should respect and support your choice.
Wishing you the best.

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5

Im not a doctor, but numbers are objective. Its easy to tell the pump has been less effective. My take on it is, Lantus seems to be better at stabilizing the peaks better than giving short acting insulin in small increments during the day. Which is exactly what this pump does.

I may just revert back to what worked without the doctors orders.

6

True. I’m just saying the pump may not be as effective because the correct rates have not been determined. Just something to consider.

7

That’s somthing I’ve also thought about, but they have been changing the rates around for a month now. I guess, right now since shes so young, I’m of the opinion if it’s not broke, dont fix it. If it’s more convenient to use a pump, later we can decide. Right now shes cant communicate how’s shes feeingl and what these 400+ put her though.

8

Berry,
Starting a pump is frustratingly crazy. Basal insulin rates need to be determined. Insulin to carb (I:C) ratios need to be determined. One I:C ratio may not work all day. How long the insulin remains active is an additional fact to determine.

Use the online resources. Find a Certified Diabetes Educator (CDE) with pump experience! One CDE told me figuring D out is a SWAG (Scientific Wise Attitude Guess). You may find SWAD with a different “A” word…

Points:

  1. The pump overnight seems good. Avoiding LOWS is good and can be tweaked later.
  2. Breakfast seems to start the highs. The I:C ratio appears off.
  3. The LOWS making a big valley in the 3-4 pm is concerning. This may mean two possible things to ask the doc about:
    a. are two different I:C ratios needed for breakfast and lunch? What is daughters activity level after lunch compared to after breakfast?
    b. is insulin lasting longer than predicted and ‘layering’ on. Breakfast lasts longer than estimated and lunch insulin causes the 3-4 valley.
  4. Same for late afternoon. Is there a snack involved?
  5. What about supper? Are both Basal and I:C in need of changing here?
  6. What ever is going on while on the pump, every evening about 9PM there is another valley.

@joe and @wadawabbit are great and have been here longer than I have. There words are seasoned and trustworthy. Each of us sees D thru our own eyes.

Keep us informed. We are all here and one of our biggest helps is expanding frustration tolerance. D will be frustrating and then cruise well and then frustrate again for no reason. Keep us informed.

9

Thanks everyone for all of your support and guidance!

When my one year old daughter was diagnosed it was right at the start of the COVID-19 pandemic. It seemed everything was fast-tracked during this time, including education part. Medical staff, including parents were wanting to get get in and out.

My wife handled most of it, while I worked. I know its was extremely difficult for her as she had to learn all of this on her own. Hospitals simply wouldn’t allow anymore than one visitor during this time.

Ive been playing catch up ever since reading all the books sent home. I fully understand I:C ratios, carb counting, basil and bolus insulin and diet. I’ve also tried to communicate with my wife on everything she has learned.

Its hard to talk to many diabetics because they are relating from an adult perspective, not a 1 year, 21lb toddler. When I read advice about “basing if your insulin/pump is working by how you feel”, I want to pull my hair out… A toddler cant tell you how they feel.

Addtionally, Pre-bolus, isn’t even an option as you dont know how much they are going to eat. So your always way behind the curve. They may not eat anything, or they may only eat foods that most kids eat. Which isn’t always healthy, but a one year old is simply not going to sit and eat and ideal meal for diabetics, they rather starve. And my child will not eat if it comes down to that. But we are doing the best we can to find a medium where she will eat.

Breakfast: Milk, Unsweeted Cheerios, Sugar free protein bar or Peanut butter

Lunch: Milk, Peanut butter Sandwich, Greek Yogurt,

Snack: Zero Powerade, Nuts, Yogurt bites

Dinner: Milk, Grilled Cheese Sandwich, apple sauce, bacon

These are some examples, so I know this is not ideal, but I also need to make sure she is nourished. Otherwise she will hardly eat, thus bringing down her weight down and making her BS even harder to manage (esp lows).

Honestly, this process has taken a mental toll on me, harder than my wife it seems. And is now difficult for me eat and my physical health has been effected greatly. I keep looking at the receiver all the time. Hearing dexcom alarms all day and night. With 30% of the time, being false alarms. I think im about to go insane.

At first, we thought maybe just one of us should handle it, instead of “tag-teaming”, but that creates an additional set of problems. If one of us gets sick, the other needs to be fully aware of how to take care of their child. And there are so many other factors, you cant expect one spouse to be tied to their child 24/7.

Right now, medical staff are less attentive and resources are spread thinner. So Im reaching out to forums to help me. Its close to the next best thing. To have people going through the same problems to help. Because right now, its been a nightmare.

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10

If you want support you’ve come to the right place. If you enter “parents,” “child” or words along those lines, you will find lots of discussions there as well. Don’t be surprised if you have to scroll through, as parents of adult children and teens post as well. You could also start your own discussion titled “infants” that could draw parents of kids in that age group to you.
You’ve already encountered terms like “basal rates” and “boluses” here and in your education. Some things are pretty universally true, but may be on a much smaller scale for tiny bodies. I encourage you to connect (difficult as it may be) with a pediatric endo who specializes in diabetes. Ideally your care team will include a diabetes nurse educator and nutritionist as well. The DNE may be more available than the doctor to answer some of your questions but should be able to give you guidance. Some insurance plans have diabetes support as well so you might check with yours.
Some conditions require periodic in hospital treatment, but diabetes is managed primarily at home/school/work, with periodic in person visits - or perhaps video or phone calls given the current circumstances. I recommend downloading pump data for the doctor to review periodically, and keeping track of what she eats - which I imagine you are doing - and letting the doctor know so they can make recommendations accordingly that you carry out at home - which is where diabetes management primarily takes place.
Do check postings from parents - they can give you advice to help your little one.

11

Barry,

In my earlier share, I left out the biggest piece to bring to the front, a parent’s gut feeling. If your young lass is heaped up like collie dog on a hot summer day or bouncing off the walls like a Super-Ball, or something else that tells your parental instinct, “something isn’t right”, then start problem solving.

  1. What do you feel or believe? Subjective
  2. What can you measure? Objective
  3. Is this like something else you or wife have seen before? Assessment
    4, What worked well last time? What were we told to do for this? Plan
  4. How do we put plan in action? Implement
  5. How well did our plan & implementation work? Evaluation
  6. If this happens again, how do we make it work better? Revision

The biggest thing now is follow your gut, watch your daughter, how she acts (feels), and the numbers. D is not just treating the numbers, it is individualizing the care to meet the needs of the individual.

I hope this helps fill in some of those holes you & wife were seeing, feeling, believing, & knowing we’re present in you two doing your best for your precious daughter.

I have probably been too wordy and academic. My apologies.

12

Hi @beary16 just a follow up. I can certainly appreciate how hard this is. In my opinion you are much better off learning with your wife rather than having 1 parent take most of the responsibility.

This is not a disease where things settle down. Ever. As your daughter grows her insulin needs will change. Drastically. Shots or pump or whatever, there is no therapy for T1 where you do the same thing every day and everything is fine. Knowing what to do is far more important because YOU end up being the primary care “Doctor” for the hour by hour decisions.

Of course she’s not going to pre bolus and she can’t tell you symptoms. That’s the nature of T1 for someone this young. That’s what the blood sugar data is for.

For under 5 years, her range is something like 80-180 mg/dl. That means under 80 you add sugar, over 180 you’re adding insulin. This doesn’t change if it’s 300 or 400. It just means a bigger adjustment. I’m saying that with all my years of experience I still get a high 300 number once in a while. It happens. Trust me you don’t die.

Her diet sounds fine to me, it’s a little odd that a 1 year old eats nuts but whatever if she can that’s a great source of nutrition. You’re doing a great job.

You can tune your own pump settings. Pick up a book such as “Pumping Insulin “ and you can make that thing work as good or better than shots. Or find a new doctor (your current doctor isn’t magical- there’s lots of doctors) and get back on shots to me that is secondary to understanding insulin and sugar control.

We’re here to help. You’ve got about 200 years of Type 1 diabetes experience talking to you right now.

13

Everyone has been very helpful.

When my daughter is sky high (300-400s), my child is happy as can be.
She does not have ketones during these high periods; Never has. Ya think I should stick it out with the pump and get to tweaking the settings more?

I just like seeing injections, bc I can verify it. Additionally, I would assume pumps
cannula could get clotted or produce a less absorption rate due to scar tissue. It just one more variable to add to the 100 others of D.

I went ahead and bought “Pumping Insulin”. I have an appointment with the endo next week. I will explain my concerns with her. She is considered one of the better endos in this field where I live. But as you can see from previous post, can be inaccessible when needed.

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14

Excellent news! Although she has less “real estate” to choose from for her insertions, I doubt she has to worry about scar tissue just yet, airtight of course you will discuss with the endo. Some of us have been taking insulin for decades - I took shots from age 3 until I started pumping in my late 20s. Until I was out of college I took just 1 shot a day, then 3 or 4 before I went on a pump. Granted I had more surface area to start with, but she should be okay. Remember to rotate sites - draw a little map of her body and “pin” the spots as you use them so you don’t use the same one too often.
I think you will be very pleased when you sit with the endo - it will make a world of difference. I see my doctor quarterly and schedule my next visit while I’m checking out so I’m covered. She is very good about returning my calls, and also has a patient portal I’ve found convenient for non-urgent communication. Keep us posted, and in the meantime keep listening to your parental instincts. As for staying on pump or going to injections, I would say give the endo a call and a summary of how things went with each, and ask what they recommend. For me personally - an adult with experience - I prefer not to make changes before going to see someone new, and it gives them some good baseline history to start off with. However this is your child, your baby, and you should do what makes you more comfortable.

15

@beary16, it has been a few days and those of us here frequently like to learn from the experiences of parents with a newly diagnosed child. It helps us learn as you are learning. So, how goes it?

16

Hi @beary16
I think part of the issue is that the whole medical community is swamped and freaking out with covid. I would definitely like to emphasize that if you can’t speak with the doctor get a new doctor. Not all doctors are created equal some are good some are less so. Some cannot deal with patients. Deal with such a young child has to be very tough as well. I’ve been a diabetic way too long, but at one point I had a new doctor try to change my whole regimen. When I asked why I was told “because I am the doctor” I told him to kiss my A#$ and that was the last I saw him. (I did wind up switching to a similar regimen under the advice of a different doctor who actually explained it. A lot of adjusting the insulin or settings is going slow and looking for patterns. Everyone has an high or low episode for one reason or another. I was on multiple insulin injections for about 42 years. I finally got talked into using a pump and sensor set up about 2 years ago. There is a learning curve with the pumps and I am finally getting to the point where I am fairly comfortable with it. The pump does make life easier, but it is very hard to get used to. I think that if you find a doctor you can speak with it will make it easier. Good luck!
Mike

17

I’d like to say things are going better. We stuck with the pump. The way we went about it, wasnt how it should be, but we just changed the carb ratio ourselves. Went from 1ui per 48 carbs to 1ui per 40 carbs in the AM. Now when shes eats breakfast she generally doesnt break much over 300. It could be better, but we are making progress…

We took this into our own hands and are trying to find out what carb ratios work. Worst case if she started falling too low we could start picking her bs back up with juice.

I’d imagine being and ped endo would be extremely difficult dealing with parents. Some parents call all hours of the day, you multiply that by 50 or more. I cant imagine…But we dont have time we wait around.

Right now we are starting to see progression. And even though its not perfect, I dont ever expect it to be. When are taking baby steps finding the correct carb ratios, but at least I know the pump does actaully work.

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18

I hope you are pleasantly surprised with your experience with a peds endo. Hopefully they choose that specialty because they want to help kids and parents like your family. You’re already taking an important step by making your own adjustments, which is what we all learn to do on our own. Your new endo - and hopefully their team of nurse educator and nutritionist - will guide you in developing the tools. You’ll probably be making frequent phone calls for a while, but as you gain confidence and learn to recognize probably subtle signs in your baby, you’ll grow more confident. And eventually she will be able to tell you something is going on, even if it’s just “I feel funny.”
Keep us posted on the visit!

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19

Hi Beary @beary16, I don’t fault you for making the adjustment in your daughter’s breakfast carb ratio; in your position, and having read what has been happening - your observant nature, I would have probably made a similar correction.

Now my word of caution based on my many decades living with diabetes. she is your baby, a tiny baby, so please make any adjustment in very small increments. you said that you could correct with juice - but only if she is able to drink. Yes, in my eyes, without knowing the basal rates in place for the eight hours before her breakfast, there may still be room for additional breakfast insulin - BUT, WAIT a couple of days and see how she is doing.

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20

Just a small note, when my daughter was diagnosed less than a year ago, when we look back at our blood glucose logs, she was regularly very high(over 300) because they were bringing her down to where she needs to be slowly since they are small (mine was 6, so much bigger than 1) and lows are dangerous. My daughter never had ketones when I checked and it is because their body has adjusted to being high (a doctor explained to me in the hospital why they weren’t worried and giving her much insulin even though she was over 600, and her labs that would show ketosis were fine). The nice thing about the pump and why I wish I had one for my daughter sometimes is the ability to give such small doses of insulin. I adjust the basal insulin by regular insulin syringe by quarter units or sometimes finer, but the insulin pen’s smallest dose is 1/2 unit which is frustrating sometimes. I’m sure you will do a really good job figuring out her carb ratio and correction factors. My daughter’s, along with her bolus change frequently, but I have some basics I go back to when I’m not sure and I adjust from there. Many blessings on the journey!

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