My T1D came home from a weekend at her dad’s who is enforcing a strict low carb diet on her when she is there, so low she only doses at night with her lantus. She ran low almost all weekend after checking her meter. She went to bed in the low 80s and one night the low 90s she is supposed to be 110 or higher per her Dr orders. If she is under 110 she is to eat something like peanubutter or drink some milk to help stabilize her sugars through the night. She told her her dad did not allow her to do so claiming he didn’t want her sugars to go high at night. Her bs was 65 and 60 the next mornings. That is low! She is not supposed to be going under 70. I explained this to her dad that he is risking her life and she could possibly go into a coma in the night and nobody would know! I don’t know what to do. I have tried and tried to explain that what he’s doing is not safe. Especially when shes running low all weekend surely that’s a sign?! Has anyone been through this? Any advice?
@Odavis7 Hello Olivia, explicit written orders from a doctor is the first thing you need, and then you go to family court and change the decree to include the new requirements, and then it will be back to court if he doesn’t follow the requirements, and then and only then could a court order him to do it or face changes to custody and possibly contempt. at least that’s how it works in NJ. I don’t think you trying to teach him something is a good strategy, so if what you are doing is not working, then you have to do something different.
your daughter needs to have carbs on her person, like a roll of glucose tabs in a purse or pocket, but I don’t know how old she is so she might not be able to advocate for herself. Tootsie rolls are good too so are starburst.
if she has a low at night she’ll most likely wake up. when I was diagnosed, like everybody in the 70’s, we didn’t have blood sugar meters, or CGM, and so we went to bed and literally didn’t know our blood sugar… for years… . I woke up in the night quite a bit, and had to get myself juice.
A CGM with remote follow is another potential strategy, if she can tolerate the tech and is a good CGM candidate. An alarm can be set and if she is in a remote location, an ambulance can be called.
normal blood sugar is somewhere between 65 mg/dl and 99 mg/dl A doctor order to be above 110 mg/dl at night is a strategy to avoid lows, at night, because lows are dangerous in the short term and highs are dangerous in the long run.
80 -90 and not dropping is an ideal blood sugar for me to go to bed with… but I’ve been doing this a long time and I don’t use long acting insulin - I use a pump with a programmable basal rate.
anyway when the time calls for you to be the tough one, you gotta be the tough one. what you are saying isn’t wrong. now you have to use the resources available to enforce the best and safest, for your daughter. good luck.
Hi Olivia @Odavis7, your method, as advised by your daughter’s doctor, sounds good in general - and to make myself clear, I DO NOT approve of the approach that your daughter’s father is advocating.
Reading your posts, I see something that should be included in your daughter’s diabetes education, self management training. She must learn first hand [not from reading what others have felt] the feeling of a low glucose level in HER body. I’m assuming that she must be very newly diagnosed with diabetes or you have been monitoring so closely that she hasn’t yet had that experience.
A BG briefly in the 50’s generally does not cause her harm and can be ‘corrected’ quite readily by following [with patience] the 15/15 rule which may need repeating three or more times. Speaking from my personal experience - like @Joe, a “low” during the night would often awaken me and I would eat something. When I was diagnosed, a ‘blood sugar’ test at a hospital took two days to develop. What has carried me through life has been my personal awareness and ability to react.
I think you should take him to family court. This definitely abusive behavior. Do not back down.
How old is your daughter? My son did not start recognizing or feeling a low BG until he was 6 years old, diagnosed at 2. I worried at the time that Dennis was right, I monitored him too closely. Our endo clearly stated that his brain hadn’t and wouldn’t develop to recognize the feeling of a low until he was more like 6 years old, consistently not until 7-8. And even now at 9, in say a soccer game, adrenaline often masks the feeling of a low BG. When he’s sitting in a classroom, he readily feels a low BG. And, at 9 years old, he definitely does NOT wake up to anything not even a low BG. He can stay asleep and eats/drink something.
This is not safe it will kill your daughter!!! You need to take this to court. Dont let your daughter die just because this stupid jerk doesnt care about his daughter’s health. Going low is ok as long as you take care of it right away which it sounds like he’s not, and it only takes one time to go too low and not treat it and die. Please! ( sorry if that was rude but this is seriously super dangerous I’m concerned for your daughter!!!)
Hi I am a parent of a 7 year old daughter who has type 1 diabetes. It kind of sounds like you aren’t at the point where court is an option . My daughters father isnt in the house so I understand you just want to be on the same page co parenting with him . Co parenting is difficult but having to deal with health issues is even harder. My suggestion first would be is have a serious conversation with him about your concerns face to face. And tell him you dont want to resort to court but you will if it continues because it’s you all daughter life at stake. Also I would teach your child about what to do in the event she goes low. My daughter can feel her lows so if she isn’t at home she wakes up calls me and I tell her what to do . She also wakes up the other adult in the house. I understand what your ex is trying to do but if this is still a fresh situation you need to get a regimen going first before tweaking her foods just so she can be stable. It’s been 4 years since my daughters diagnosis so there are certain foods i give and dont give to avoid overnight lows and highs. I was advised in the beginning to let my daughter be in the 200s at night to avoid lows which over time I have stopped doing because it didnt make sense but that was after getting her normalized . Come up with a plan because at the end of the day you all have to co parent because you’re bonded through your child and neither one is going anywhere so you have to work together.
Dear Olivia, my son went to live with his father, far away, for a year. Everything we built up for my now 11 year old T1D seemed to fall apart. A year later, we are on the rebound, thank God. I tell you this because I feel your pain and anxiety. But we have to acknowledge that the fathers love their children and strive to do the best for them. So, my suggestion is to take another way with your ex. Do try to speak to him face to face, over a cup of coffee and his favorite cake. Tell him that you appreciate how seriously he’s sticking to her dietary needs. Share that this type of discipline will help your daughter greatly in the future, but ask–don’t tell–if he feels that she needs more adjustment time. As an example, cite her going low at night… my guess is that he’s heartbroken with this diagnosis, and may feel totally helpless to control it, just can’t express it in the right way. Maybe you could take him to the local jdrf support group to help support your concerns. May God give you the strength to resolve this situation soon.
@Azeeza1998 Welcome to the TypeOneNation Forum. Not being the parent of a child with T1D, I appreciate the “comfort” you are bringing to Olivia.
As you well point out, it is close to impossible to know, or even understand, what living with diabetes is like until you live with [someone with] diabetes day-in and day-out. That not only applies to a caring parent like you but also to many hard-working medical professionals with wonderful credentials; living with diabetes doesn’t always “follow the book”. Keep up the good work you doing with your son and “listen” to his unspoken words.
Keep us informed about your son’s progress and visit here often to share your thoughts. You do not have an easy road ahead of you, but trust me when I say that you, and your son, will develop a rhythm and life with diabetes will appear to be more easy; I’ve been living with diabetes for 63 years.
@Odavis7
I think what’s missing is what you define as low. If she’s 80 or 90 all day, that is not low. That’s a very healthy blood sugar.
There is nothing wrong with a low carb diet either.
If Lantus is dialed in, then going to bed at 80 isn’t a big deal, but I can understand why you would be concerned without a CGM. 65 overnight isn’t a huge deal either.
Consider spending your energy gathering feedback from diabetics about how much a CGM improves their lives, keeps them safer and let’s them run 80s and 90s safely and feel great. My daughter (6) noticed how much better she feels when running 70s and 80s at night vs 120 or 130. A CGM does not promote laziness but equips him to encourage low carb to maintain non-diabetic blood sugar safely, with normal activities and such. It’s also the best way to get her Lantus dialed in for a flat line overnight.
Basically a CGM would help all 3 of you. You can both try different things and your daughter can learn to self manage and detect her lows. And, if your doctor isn’t super old school, he would be giving you a modern BG range for her of 70 to 150.
I’m aware 80 and 90ball day is fine. My issue is that he refuses to allow her to eat anything but salad and chicken while her brother and sister and him eat whatever the hell they choose, that when she feels low and is low at 70 which her diet plan that was given to us by her Endo and dietician states she is not go under 70 he refuses to let her eat anything to bring her sugars up. She is supposed to be 110 at bed time and she is not comfortable going to bed with a number lower than 100 because she does go low during the night we’ve tried it at my own house and he refuses to allow her to eat anything like peanubutter or what have you to help stabilize her sugars. I’m not being a helicopter mom with her. When I say she hasn’t quite figured her low or high feelings out she mostly is low when she feels low her legs shake. But there are times when she says she feels low and checks and is at a really good number. He tells her horror stories about having a CGM or pump. Even tho he refused to show up to the class. My issue is that anytime she feels any type of way he refuses her, her cares that she learned in class. I mean she came home afraid to give herself her lantus in her arm because he told her it doesn’t work if you use your arm. Where he found this info idk. She is becoming way more confused on how to manage her diabetes. He won’t agree to meeting with the Endo and dietician all of us to get a plan together we all can follow to help her know how to manage. I’m not saying low carb diets are awful but she doesn’t like it, she’s voiced it to me and to him, she feels tired when she goes there, and sick. That’s my issues.
hi Olivia, I get symptoms of low blood sugar when I am low, and I get them when I am dropping… for example I might test and be 125 mg/dl and have low symptoms, but than an hour later I might be 60–70. just wanted to let you know that this is possible.
The users here are just trying to provide feedback , based on your post title, where you appear to be asking for help. so what do you think you are going to do about your problem? how can we actually help you?
Phebe,
I know you are sharing out of concern but your concern is a little alarming. You don’t want to scare Olivia, she is already worried.
How old is your daughter if you don’t mind me asking? I definitely can hear the frustration and concern in your message. And as a mom myself I get that. I am sorry that you and your daughter are going through this, it is not something that can easily be dealt with and on one should be put into a box so to speak on how to manage one’s diabetes. If what the doctor and dietician said is working for your daughter, I suggest reaching out to them for advise on how to address this issue with your ex. I am sure they have experienced family members not being supportive. Also, I want to re-assure you that her lows at 65-60 are not a horrific low, a low non the less but not so life threatening. Everyone is different as to how low they can go before something major happens. Take me for example, I have had lows as low as 28 and 32 and never passed out. I definitely couldn’t do much of anything but feed myself glucose tablets and just sit and wait for my blood sugars to come back up. But anyways… maybe getting a CGM like the Dexcom would be a good solution. That way everyone will know what your daughter’s blood sugars are doing on a 24hr basis and alarms will go off when she gets to a low that she has set and even alarms can be set for high blood sugars. My thoughts and prayers are with you! This is no fun disease!
Yeah sorry maybe I was a bit extreme but still a serious problem. Just really concerned for her…
Sorry.
It’s okay. I know you are concerned. Many of us are.This disease sucks! And managing it is hard! Often people who care about us try to be the “Food Police” but they aren’t really helping by doing that, but I also think they just don’t realize that they aren’t helping.
Yeah. I had to convince my parents of that. And after a lot of lows I was finally able to convince them that carbs are good.