Shes 9 and very protective over who knows and who doesnt know shes a diabetic. She knows adults have to know but only a few of her friends know . She doesnt spend the night over people homes because I’m not comfortable and with covid I dont have to think about it right now. Because she is so protective of herself we talked about it and she said she doesnt want a pump because she doesn’t want everybody to know. With bullying and things going on in school shes very nervous about that . Maybe down the line but right now shes adamant that she wont wear it .
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Understood. BTW, you might check with the school nurse to see if there are any other kids in her school with diabetes that she could connect with. You might have to provide your contact info to give their family (due to HIPAA) if she’s willing to reach out.
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That’s a good idea. She doesnt know any kids that are diabetic and I’ve really been thinking it may be time for her to connect with some . I think it make her more comfortable
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I have struggled with dawn phenomenon since my diagnosis some 24 yrs ago. I also struggled with finding an endo who was interested in helping me overcome feeling terrible at the start of every morning. Something you might consider is trying a freestyle Libre cgm. You can hide the sensors pretty easily under shirt sleeves. This would allow you to get a good handle on when her spike starts. Mine is quite repeatable at 3am. Some are not so lucky. I transitioned to a pump a long time ago so I have had many interactions both good and bad so I sympathize with her fears but it’s also an important part of her life so continuing to hide it is likely not in her best long term interests.
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She understands her diabetes is one of the most important things and doesnt hide it from those that need to know but right now at 9 shes not comfortable with certain things . I dont force her with things I know we can maneuver around for the time being. I have to think of her emotional well being as well. Anything that isnt avoidable as the parent I step in and let her know what she must do
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Hello again ndidi. I’m glad to hear you’re going to look into a place like Joslin clinic. Those places have a lot of resources and experience that may make a major change for the better for your little lady. I agree with Thomas when people give advise that all insulins are basically the same and need to research info on that statement because I too find it insulting and I’ll explain why. When I had my quadruple heart bypass, the day after I was assigned a hospitalist to cover my T1D. He had me on a bolus only regiment depending on my BGL’s. My BGL’s went up to the 300’s to 400’s without eating anything due to the high’s causing extreme nausea. He ordered BGL’s to be done every hour on the second day and boluses injected accordingly to a schedule he had come up with to prevent dose stacking. Nothing changed. I was getting worse by the hour. The third morning he came in my room and said he was at a loss of what to do and accused my wife of bringing food in that the nurses didn’t know about. He said the boluses of Humalog should be enough to handle my high BGL’s to which by then I was severely angry at him for accusing my wife of something she didn’t do and yelled at him saying I’m on Novolog not Humalog because it doesn’t have any effect on me and my wife hadn’t done anything wrong. He dismissed my comment and said he was leaving my case and insulins were the same as he stomped out of my room. The finger sticks continued for the rest of the day and my levels were increasing to 400’s to 500’s. I felt like I wanted to cash in my chips and leave this world at that point. That night my nurse came in to do a BGL check and found me in the dark on the edge of my bed clenching the heart shaped pillow to my chest as I was vomiting any water that I had drank and my thirst was unquenchable. The nurse asked what she could do to help me and I said I need my Novalog. She explained that the hospital had a contract for only Humalog and had stopped keeping Novalog. I said; Well I guess this is how it’s going to end for me. She said let me see what I can do and left. She came back in an hour to do another BGL, I was 450. She reached into her pocket and pulled out a box of Novalog, syringe and prep pad. I asked where she got the Novalog from and she said she had gone to the hospital pharmacy herself and looked in the refidgerator and found 2 vials that had been over looked. We discussed the sliding scale dosage and she let me do everything myself. She continued to do BGL’s throughout the night and noted my BGL’s were falling by the hour. In the morning as she was leaving her shift she came in and told me that my BGL’s had leveled off at 153. I was able to eat a little and drink water and keep it down. Once I ate they started me on my Lantus and Novalog and I went home in 2 days. Thank God for a nurse that went above and beyond and believed my life experience, and no I don’t believe all insulins are the same.
Unfortunately some Dr’s want to act like medicine is an exact science. I have found that the truth lies somewhere in the middle. There is a lot of science but there is also a lot of art and experimentation to it as well. I encourage you to find a Dr to work with who embraces the ideology that we are not all the same and will work with you to find the best treatment for your kiddo.
This is truly interesting…I’ve always said my daughters a1c were always so much better on novolog than humalog but doctors have always been adamant that they’re the same. My insurance changed what they would cover and the minute she went off novolog things have never been the same since. Thank god that nurse listened to you!!!I hear what the docs say but being that I am scientist I understand that the 2 insulins arent the same. Chemistry wise ( whether ingredient or chemical compound) if they’re different slightly then in science its considered they’re not the same.
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I’m in the DMV, and several or at least some of our hospitals have diabetes treatment centers, where doctors are our certainly should be on top of things. We would like to think all doctors are - especially those who work in a hospital ER or patient setting, but that’s not the case. When possible, and if you have a day in the matter, request to go to a hospital with a DTC. In my case my diabetes specialist is with the hospital so that’s where I go. Diagnosed in 1963, the start of 2019 was when I had my first and only “pre”-KA as I prefer to call it. Went to that hospital’s ER for treatment and my doctor came to check on me that day. I believe they said all diabetes patients are admitted to the DTC. One of my nurses was even Type1!
It may not always be possible but if you can, go to a DTC.
Hi, I had the same issue with Levemir even with a split dose. My endo recommended changing to Tresiba. It wasn’t covered on the formulary, so he wrote a medical necessity letter and the PBM (pharmacy benefits manager), OptumRX approved it. Since switching to Tresiba I’m SO much better controlled, with no dawn phenomenon. I also take Humalog before meals.
Unfortunately the PBMs, rather than patient need dictates what is prescribed. Getting anything that isn’t on the formulary covered is not easy, but well worth the battle. You’ll have to push your daughter’s doctor for the letter, but given the insulin history you’ve described he/she should be willing. Good luck !!
I’d also recommend a CGM for your daughter, I use the Freestyle Libre which is easily covered with clothing. Dexcom is worn on the tummy so even easier to hide. Personally I had lots of problems with Dexcom including a skin reaction at sensor site, so switched to Freestyle Libre (which also wasn’t on the formulary and required yet another medical necessity letter/battle with the PBM, but we won !
Perhaps your daughter can try it over summer or a school break, when she wouldn’t have to worry about other kids ‘prying eyes’. I hope these tips help !
This whole conversation about Levemir is really interesting. I didn’t know anything about Levemir peaking. I did know that my doctor wasn’t thrilled to put me on it. I had been previously on Lantus for a year and have only noticed minor changes. Levemir doesn’t make me hypoglycemic at night like Lantus did. Also, with Lantus, if I was 30 minutes late with my injection, I wasn’t affected. Now I have to be on the ball because my blood sugar spikes if I am late with my Levemir dose.
Here is where we are my daughter woke up in the low 300s this morning after taking her 2 units of levemir at 8 pm the night before . I gave her 1.5 of humalog for breakfast at 10 am. By lunch (1pm) she was 312 and by 3 pm she was 168. No she didn’t have a lunch dosage because if I do her low is 10x worse. This is her pattern , about 4.5 hrs after a humalog injection is when the lows start and continue for a while. During the week when she wakes earlier it’s still 4.5 hrs after injection that she drops. It seems that humalog stays in her system longer than 5 hrs because that low can last for a few hrs . I read it peaks 1-3 hrs and lasts 4-5 but that isnt the case for her it’s much longer. I have been giving her a high carb snack at about 4 hr mark before a real low hits but sometimes she drops temporarily and some days the drop lasts longer. I know someone said levemir and humalog could coincide which could cause a low but 8 pm the night before would cause a low 18hrs later with the humalog dosage?
I wish I could help with advice on injections but since I use a pump I’ll leave that to those with expertise in that area. My only suggestion - which you might be doing anyway - is making sure her snack has some “staying power.” Some high carb foods or drinks will raise you fairly quickly but cause you to drop later; while others, such as cheese or peanut butter and crackers will last a while. A nutritionist once suggested I have yogurt as a bedtime snack and that did keep me stay overnight so it could be a good one too - of course your nutritionist will have more ideas.
How is your search for a new doctor coming?
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Met with one but he has the same views as her current endo. The endo she has now is one of the top well known in the st Louis area. We have been on the same page for years but now because of the changes her body is going through we are definitely not seeing eye to eye. A lot of endocrinologist here either know him or have actually studied under him .
Your comment of staying power we definitely had to learn the hard way because when her dangerous lows were happening I was giving her different things and they weren’t staying at all which was so scary. Right now apple slices and her favorite taki corn chips together are showing a lasting staying power. I think you told me about yogurt and crackers and peanut butter so I’m keeping those as well on hand.
Hi My daughter was always high in the mornings. Her Endo suggesting changing her basil insulin shots tone taken in the mornings when she wakes before breakfast. She has been doing this for years now, seems to have worked for her.
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I always wondered about that as an option . I’ll talk to her endo about this. Did she also take her bolus in the mornings close to the time she took her basal?
Yes, but my daughter bolus’ after her meals, (she doesn’t always finish what she had planned on eating) Taking the basil shot in the morning worked throughout her teen years and until now, she is 25 now. She recently started having a re-occurance of the Dawn Effect so her Endo gave her an additional pen to try with her morning meal only. It is called Fiasp. Its reaction time is faster , & it’s peak time is 3 hours. She has been using this new insulin for breakfast along w/ Tresiba, her basil insulin. So currently her regime includes three different insulin. In the morning Fiasp &Tresiba , and thereafter Novalog for meal bolus’. Obviously talk w/ your daughter’s Endo. I’m sure age and activity level has a lot of bearing on what is recommended. Hope this helps.
Why is it that switching her basal to the mornings worked? Is it because it’s already in her system for hours by the time bed time starts?
Finding a new doctor can be difficult - especially when you’re searching for a diabetes endo for your child. I saw a couple of new suggestions I hope work for you and hope your current doc will be on board.
If you plan to continue looking let me offer this: naturally you want the best for your daughter, and the doctor you have is well known - and I assume well respected - and has trained others. Despite his standing, and ongoing study and training, he may be set in his ways. Maybe it’s in part a function of age and a perhaps unconscious desire to stick to older protocols although more options are available with newer insulins (I changed doctors many years ago - the new one was younger and suggested we try some things my first did not, which helped my numbers).
Although a doctor may be well known in the area and that does give you info you won’t have about “lesser knowns,” it may be someone who has not yet “made their mark” could be a better fit, more willing to try new things and work aggressively to improve her numbers. Your provider directory will be a place to start, and some website sleuthing may provide their age. You might even look for a female endo who can help her through hormonal changes later if not now.
It may feel awkward to leave a doctor who is well known by patients and other doctors in the community, but I get the feeling you’re a very confident “mama bear” who will fight for her daughter regardless. Joslin is considered overall “the” place to go for diabetes treatment, but even some of their locations have gotten poor reviews; so despite your current doctor’s reputation, even if he’s among the best in your area, someone else could be better - at least for your daughter.