Hello. My name is Laura. I am a mother to two, a son who is 10 and a daughter who is 6. My daughter Faith was diagnosed with type 1 in October of 2010. It seems unreal that we are almost 2 years into this. I also did not know that there was so much support out there, I found this site through my local JDRF. To be honest, for the first year I think we were in survival mode, trying to learn to help Faith learn to live with this. I wish I had reached out sooner but it was very overwhelming when she was first diagnosed. I was also trying to finish graduate school at the time. We had a lot going on. It all started with her exhibiting symptoms of what I thought was a UTI. I took her to the doctor and within a few hours we found ourselves admitted in the hospital and being told our daughter was very ill. I am sure all of you can relate to the initial shock. We spent a week in the hospital getting her levels under control and then were sent home with a ton of literature and prescriptions, having to learn how to cope. I will never forget how scared she was and how scared I was for her. I vividly recall one of the doctors telling me that within 3 weeks I would know more about diabetes and about how to manage her diabetes better than the doctors. At the time I did not believe him, but now I understand. So, that is my story. I am here in hopes of receiving and giving support. I hope to make new friends, and how to better help Faith to cope with having diabetes. It seems that she is having a lot of anger over it which just started in the last 6 months. She will not talk about her feelings with me about it, in fact, she does not want to ever discuss anything related to her diabetes. She will tell me that she hates diabetes, and just a week ago she told me and my son that we were lucky that we do not have diabetes. I sometimes do not know how to respond to these emotions. I end up telling her that it is OK to be angry, but that we have to handle our anger in a healthy manner. I do my best but it is hard when she will not talk to me about how she is feeling. I do not pry or pressure her, as I know that it will be met with even more resistance. I try to let her feel that she has some control over her care, such as allowing her to choose her injection sites ect.. I appreciate any support or advice that I can get here. Thank you for being here, and if you made it through this long post, thank you!
Laura Cassity, LMSW
You are doing an amazing job with her feelings, when I was first diagnosed I was first very angry I was thinking "why me?" but to be honest I am so grateful I got diabetes! It has helped me be healthier and understand other peoples conditions better. So maybe she is still in the "why me" phase. But she is so young! At this age I would expect her to feel a little sad. Just remind her she is still the healthy, beautiful, perfect girl she always has been!
P.S. I dont know if you guys have already looked into low glycemic index, but if you have not I would try feeding her this way!
Sending love and light, Jess
It's a frustrating battle we all fight - I'm sure Faith will come around. You're giving her a good base of support so she can effectively cope with her diagnosis. But it can be a painful path nonetheless.
...adn Welcome to Juvenation Laura. I'm excited to have a trained social worker/Mom of T1D in our community. I know your expertise and perspective will be a welcome voice in our discussions.
Every diabetic struggles with his or her diagnosis at some point. Does your daughter have any specific complaints (hates testing, hates taking a shot at school, etc.) where you could make a change to help make it easier? Part of coming to peace with diabetes is finding out how to make it work in real life. Your doctor will make lots of suggestions, but frankly the world won't end if you're more lax.
Even though I hated my diabetes and rebelled against it when I was younger, I eventually came to terms with it and am now almost 40 with no complications, a healthy non-diabetic son, great husband and good job.
Your daughter is going to have a good life. It will be different because diabetes is now a part of who she is. But she's going to be okay.
T1 since 1977 Minimed pump since 2002
Hello Jess, thank you for your response and perspecitve, this is very helpful. I really appreciate you sharing with me your reactions after diagnoses, it makes feel better to know that this is normal. In my rational mind I realize that but in my irrational and emotional mind it worried me. I initially thought I should get her in with a counselor but have decided to give it more time and see how she does. We are starting to make some connections and I think that may help a lot. Thank you again!! I look forward to getting to know you and other members here.
Thank you so much! It helps so much to have this additional support, especially from those who really live it and understand it and can relate. I feel like the social worker in me comes out too much when it comes to addressing emotions, BUT therapy never works on family members. :) I guess I have a few extra tools under my belt from the knowledge and education and that helps. I have considered getting her in to see a counselor to address some of her emotions, but I want to give it a little more time. I hope that I can help others in some way, I am still very new to diabetes and I am learning something new everyday. Thank you again for the warm welcome! Oh, and I love my field, and I am excited to begin my career as a social worker. To be honest, I would LOVE to eventually go into therapy working with children coping with diabetes. Look forward to developing new friendships here!
Hi, first, thank you for your response. She has expressed that she does not like being bothered all of the time with blood sugar checks and shots. She also gets upset if our oldest son is eating something that she cannot have. I would like to clarify a little more on this paticular issue: my son does not have type 1. He is so wonderful about adhering to the same diet, in other words, he will not eat foods in front of her that he knows she cannot have. So, he sometimes will sneak snacks and she has caught him and it angered her. Our family approach from the start has been to make this a family change, we eat the same way Faith eats. We have made this a family change in hopes of making this easier for her. When she has expressed strong emotions of how much she hates having diabetes, not only do i tell her it is OK to be angry, I also tell her that in reality, the way she has to manage her health is the way everyone should be managing it to remain healthy. I do not want her to feel that she is different, I just want her to enjoy being a kid and feel that she is just like everyone else, we just have to have certain foods at certain times and our life has changed but it is to keep her healthy. I hope all of this makes sense, it is hard to put everything into words here. Thank you for sharing your story with me, this gives me hope that she will be OK. I am so glad to hear that you are doing well. That is awesome! Thank you again!
Do you know about carbohydrate counting and adjusting insulin to cover whatever is eaten? Thanks to carb counting (which has been around 20 years) there is no reason your daughter can't eat whatever your son does. Restrictive diets are old fashioned and only work for certain people. Please don't tell your daughter that with diabetes she just has to eat the way everyone should. I was told that through most of my childhood and it just made me mad. Thankfully, that's not true anymore. Diabetics are much more likely than others to develop eating disorders so try your best to make sure your daughter has a healthy relationship with food and she knows that none of it is forbidden or bad.
Don't test just to test. Make sure you're using the information to adjust insulin or prevent lows. Your daughter needs to know her meter isn't a judge. It's just a tool to help figure out if she needs to eat some sugar or adjust her next insulin dose. It sounds silly, but I've benefitted by using the One Touch Ultra Minis because they come in cool colors and are cheap and easy to take with me. Find what works for your daughter. You might also consider taking a testing vacation, like if she tests 4 times a day for 6 days then on Sundays she gets a day off from testing. Ask her doctor for suggestions.
And try your best to have a doctor with pediatiric endocrinology experience. With diabetes knowledge is power. Compassionate, realistic support from your medical team is vital.
This article is written for teens struggling with diabetes, but it might help you get insight to your daughter's frustrations. www.diabetesmine.com/.../teens-with-diabete.html
It sounds like you're doing a really good job parenting in this difficult situation. Good job.
Hi, I suppose I am not being very clear, it is really hard to type out everything and convey my meanings. We have done carb counting from the start. We do not have her on what I would consider to be a restrictive diet, but our belief is that she has to still watch some things. She is not going to have cake everyday, or vending machine muffins even with a meal and load up on insulin. We were told by our doctors and in the education class that such food items, and I am referring to pure sugar and bad carbs that try to encourage those as holiday or special occassion foods. I appreciate your perspective as you have lived with this for a very long time, however, I do not tell her she has to eat the way everyone should, my orignial statement was : "the way she has to manage her health is the way everyone should be managing it to remain healthy." I believe this to be true, we should be more mindful, and I am specifically referring to our family unit, not judging other people. I convey to her when she feels angry, that although she has this, it just means we have to watch closer, and choose certain occassions which these foods would be ok . When I tell her this it seems to help. We do not deprive her of her snacks or favorite food items, but I do limit the amount of the pure sugar stuff such as candy and pure junk that is not good and try to offer her a helathier option. There are such thing is foods that should be avoided and those were pointed out to us in our class. It is my responsibility to educate her. I also have been told to choose our battles with food, so we do work it out and do not battle her. Sorry if I am am coming across as being defensive, it is not intended to be that way, I just feel strongly that she still needs to be aware of what she is eating. We do see a pediactric doctor. I have never heard of or been told that we can go a day without testing, there is no way with the way her numbers have been and recent changes. We have to test her before meals to administer the correct amount of insulin and 2 hours after meals. She takes injections 5 times a day, 2 which are Levimir. I appreciate your help.
I think the only foods diabetics should avoid are the same ones everyone should avoid. My 11 year old eats everything and anything her brothers can eat. We just learn how to bolus for it. Perhaps she feels she is being singled out for an extra healthy diet that the others in her family don't have to follow so closely. My kids are so sensitive about fairness that I swear they can recognize if one gets a thimble full more of something than the other got. It gets ridiculous. I'm sure my kids aren't the only ones with the special sense of "why did she get more that I did?" My answer is often a sarcastic "because I love her more".
If you can get a pump, get one. It will make your life easier and less regimented than MDI.
What you said originally made sense. And I understand as a parent you want to do the very best you can for your child. That's great that you are knowledgable about carb counting and intensified insulin therapy.
Both were intended to help diabetics have freedom and more of a normal existance. Doctors sometimes forget that and expect patients to be like diabetes robots, living to carb count and bolus. =) Realistically, you can't maintain that long term and it often leads to burnout.
It's great that you're encouraging your daughter to eat healthy, like we all should, but it sounds like she is feeling a disparity and is frustrated by the situation. Most people would feel the same. It might be more helpful to your daughter to find out what would be her ideal meal plan and then work with her to create a compromise you both can live with.
I think it's difficult to have tight control with injections and wasn't able to truly do well with my diabetes until I got a pump. It might be something to consider. John Walsh's book "Pumping Insulin" and Gary Scheiner's "Think Like a Pancreas" both offer great overviews of pumps. When pregnant I carb counted carefully and tested a lot and had a 5.1 A1c while eating whatever I wanted, including mint chocolate chip ice cream almost every day.
Testing is very helpful, especially after decades with type 1 when a diabetic starts to lose his/her physiological response to highs and lows and can't sense them accurately. But a diabetic can go days, weeks or years without testing. You can't be as tightly controlled, but you can do fine. Many of us were diagnosed years before glucose meters existed.
It sounds like you're trying to take such good care of your daughter. I'm not criticizing your parenting, just offering a different perspective. We each deal with the logistics and stress of living with diabetes differently.
Take care and hope you have a good weekend. -Jenna
Thank you so much for your help, and I want to say that I am sorry if my reply from earlier came accross as being defensive. I am here to receive support and I do want others perspective on this, if I could do it all on my own and had all the answers I would not be here. :) You have made some very good points, especially about people managing without all of the advancements in medical equipment that we now have. I just know my doctor would throw an absolute fit if they saw any days of not watching her levels, and to be honest, I do not know I if I could do it. I do think it is a wonderful idea though when dealing with emotions, as I have specifically mentioned my concern has been with her anger over it and her not wanting to be bothered by being checked and getting shots.
We did discuss the pump with her, and she saw others with the pump at camp and she very clearly told us she was scared of the pump (that it would hurt) and that she wanted nothing to do with it at this time. I think for the time being we are going to wait until she feels ready to pump. I have heard so many great stories about the pump! I am so grateful that it is a future option. I think that I am going to try the "meal plan idea" that you suggested. I really appreciate this, as I know you can tell me exactly how you felt and it may be how she is currently feeling. Do you have any other ideas regarding compromising a meal plan with her? That is awesome how well you have managed yours! Truly inspiring and gives me so much hope. Oh, and I discussed the eating healthy stuff with my husband too, our concern with letting her eat what she wants is that we do not want to have to pump her full of insulin to compesate for what she has eaten and cause her to become insulin resistant. We do have so much more to learn! I think I am learning something new each day.
I cannot emphasize enough how much I appreciate the help and support, and I hope I have not appeared to be rude. That is not my intention. I know you are not criticizing my parenting.
Terry, yes, they definately can sense it! We have made it a family change, where we eat the same things Faith eats, if she does not get it then we do not. The problem with that i think is it has now caused my son to sneak snacks and she has caught him and becomes very upset. So, now with what I thought was the best way to handle this entire thing seems to have backfired on me. I just want to get a healthy balance that they can both be happy with.
My daughter's diabetes was much much harder on one of my son's than it was on my daughter. Your boy could feel like he is being deprived because of his sister's illness.
I understand what you're trying to accomplish and know that in theory it should work. But theories in diabetes management don't always play out in real life. I was an only child and was diagnosed back in the 70's, before anyone knew about carb counting and adjusting insulin. My mom eliminated all sweets and junkfood from our house so I could have what was then the "diabetic diet" of no sugar, fat free foods. It should have helped me be a healthy eater, but instead it made me rebel. Once I moved out I went crazy and ate sweets non-stop for the next decade. I'd often throw up or skip my insulin so my gorging wouldn't make me fat. I've dealt with eating disorders for most of my life and my endocrinologist said that most of her type 1 patients have the same struggle.
That's why I'm an advocate of carb counting. It allows a diabetic to eat normally and take the insulin to cover it. I'm hoping that the next generation of diabetics will have lower rates of eating disorders because of this more realistic approach. In my experience, most people don't do well with a strict lifestyle. I would challenge you to lighten up with your daughter's diabetes management (while still being reasonable). You might be surprised that she actually does better being less regimented.
Taking more insulin will not make your daughter more or less sensitive to insulin. Insulin is one, if not the only, drug that has no maximum dosage. A type 1's body needs what it needs. If a diabetic becomes obese it can lead to insulin insensitivity (type 2 diabetes), but otherwise there's not a huge benefit to restricting carbs.
One cool thing you may not know is that many longtime type 1 diabetics still produce some insulin. The Joslin Diabetes Clinic study documenting this is in the links below. This type of diabetic would naturally take less insulin than one who produces no insulin, though they're both type 1.