Hello, I need help pease. My daughter who is 23, she was dx’d when she was 5 with type 1, she has been going thru DKA once a month for the last 2 years (seems like that’s impossible but it’s true). I have done eveything I can think of to help her. I dont have anywhere else to turn. I believe the main problem is she’s struggling with mental health, which is effecting her diabetes. She’s already having vision problems (has eye surgery recently to correct her vision), she had a ulcer on her heal which she took care of it and it healed. But her going into dka that often is really scaring me and I don’t know what to do. The MDO said she wont be around in another 10 years if she doesn’t stop this now. She also has a 3yr old daughter who sees her getting so sick and when she ends up getting admitted to the ICU, I have to take care of my granddaughter. I’m at a loss and any advice wold be greatly appreciated. Thank you!
Hello @Tens2083. Welcome to the forum community and thank you for writing in.
I’m so sorry you, and your family are going through this. I’m sure you have encouraged your daughter to get help for her mental health issues: she may be suffering from depression. My mom was treated for clinical depression for almost the last 40 years of her life but I don’t claim to be an expert so she should have it formally diagnosed. Like diabetes it is not curable but it is treatable if the person is willing to do the work - sticking with the regimen is essential. I have another family member, in her early 20s, who is struggling with depression right now and refuses to help herself by getting treatment. Unfortunately treatment programs work if the person will not cooperate.
My mom was on the best combinations of depression meds she could tolerate or would take given the side effects - even so, now and then she would stop taking them and eventually go into a crisis and have to be hospitalized. There have been advances in depression medications since my mom died 7 years ago (at age 94): treatments may be more promising and side effects hopefully less bothersome now, so if depression is an issue it can be managed so she can enjoy life with you, her daughter, and those she loves. Easy to say, but getting her to go to and stay with treatment is hard and I apologize for preaching to the choir.
You said she goes into DKA once a month and that makes me wonder if it’s related to her menstrual cycle: many women need to make adjustments to their insulin regimen around that time - setting a “period profile” on their pump or making necessary changes to their injections, maybe starting a few days prior. There is some trial and error involved to get the right settings and timings in place, but once they are set it can be a game changer. I’m not familiar with the term MDO but her endo should be able to help her tweak her settings or recommend adjustments to injections.
Is she satisfied with her diabetes doctor? Some people continue to see the same one simply because that’s who they’ve always gone to. But if she is not comfortable with them, if they do not listen to her concerns - there are any number of good reasons for finding a new specialist.
A few suggestions:
- Continue to encourage your daughter - maybe the wall she had built will gradually come down thanks to your efforts. In the meantime,
- Seek counseling for yourself even if she will not go. You do not have to deal with the stress of this alone, and while friends and forums are great, working with a mental health professional can make all the difference.
- Find a disability lawyer. My sister is developmentally disabled so many years ago our parents found a law firm specializing in elder and disability law, to help them set things in place so she would be taken care of when they no longer could do it themselves. They will be able to counsel you on and formalize custody of your granddaughter, and there may be legal channels to go through to get your daughter the care she needs as well.
- Check out local resources available to you. The last year or so of my mom’s life a medical social worker informed that home health services were available to us! My husband and I had been taking my mom to doctor appointments, and it was fairly challenging for her even though she was somewhat mobile. I had no idea “house calls” even existed anymore, and getting them was a huge blessing. After she passed I learned there were other types of services to assist families with elder care that I hadn’t even known enough to ask about. A disability lawyer or medical social worker can give you guidance.
Please keep us posted on how all of your are doing.
Hi, thank you for all the information that you gave. I will look into your recommendations. As far as my daughter and her mental health issues, she tells me “mom I need help” and when I find the help or give her help, she doesn’t want to follow through. I know she doesn’t want to continue to feel so sick all the time, we’re at the hospital as I write this now. She’s struggling so much, i dont know what else I can do for her. I feel so helpless even though she’s a legal adult, she’s still my daughter who’s so sick. It’s so hard, on me as well. It’s so scary to see her in dka every month,what is it doing to her internally?? I’m just so lost, don’t know how to help anymore as a mom, you know?
@Tens2083 Hello Kristen, and Welcome to the JDRF TypeOneNation Community Forum! Thank you for visiting this Forum and sharing - note that I am not speaking as a clinition but rather as a person living with his diabetes for many decades.
The struggle with diabetes your daughter is experiencing can affect many aspects of her life and maybe beginning with diabetes management is the place to begin. Do her DKA events appear regularly such as menstrual as Dorie @wadawabbit suggests? Is so, it is very possible these can be avoided by increasing insulin, both background insulin and meal-time insulin, a few days ahead of her expected rise.
As you know, DKA can be dangerous. But, DKA does not, or very rarely, makes a sudden appearance. Acidosis, the buildup in the body of poison, occurs by the body not being able to utilize the food eaten due to lack of insulin being present. Acidosis can also be the result of severe dieting or eating disorder. Having have lived with diabetes for almost two decades, your daughter should know enough about how insulin affects her and be able to make small adjustments in her doses as she notices her glucose levels rise following meals and then NOT return to normal before she eats again - being pro-active is important.
The only other thing that comes to my mind at the moment is, connecting your daughter with others with Type1 - it can be lonely if you don’t know anyone who understands what it’s like.
Maybe she would like to check out the forum. Our members come in all ages, shapes and sizes, and some have complications and can relate to that aspect. But mostly we encourage one another, give some tough love at times, and try to support each other on our respective journeys. She might even explore the website and discover some resources she could check out on her own if she feels so inclined.
My best suggestion is that she’s running out of options, I hate to say this but the best option would be a pancreas transplant, or stem cell, (I AM NOT A DOCTOR OF ANY EXTENT I SIMPLY HAVE DONE RESEARCH ONLINE AND HEARD THAT SHE IS THE DEMOGRAPHIC FOR THIS RISKY OPTION) here’s something I found, again I’m so sorry it had to come to this, but I’m so happy there at least is one or multiple options, you and your daughter are the type of people I fight for when it comes to my research into an artificial pancreas: