So I am looking for advise. Our son was diagnosed in September. He has done well with adjusting up until now. He would rather choose not to eat then prick his finger or get insulin. Tonight he had a 5 minute cry over having to do this, and how my husband and I didn’t understand and we wouldn’t have to do this for the rest of our lives. I fell helpless at this point with him. I am just hoping this all will get better. Did I mention he is 6 years old, and the only diabetic in his school, or that he knows of?!.
I am so,so sorry. It hurts my heart to hear of another child who has to take on such a battle. My daughter (now 6) was dx Nov 2014 at the age of 5. It’s very tough, but you have to hang in there. Reach out to your local JDRF chapter, get involved, it really does help. My daughter is also the only one in her school.
Feel free to reply to me for a connection.
Sending you and your family huggs.
Our 11 year old was diagnosed 11 months ago. First, we got connected with a mentor thru the JDRF. Huge support. Second, we “allowed” the break downs and anger and frustration and all the other emotions that come with t1. Except, we put a time limit on it. So depending on the fear or emotion or discussion or feeling that is happening we will say to one another or to ourselves, ok I have 30 minutes to be crazy mad. Or I have 1 hour to be sick of this. Of course we r always some sort of frustrated or mad or sad or whatever but the reality of this disease is that dealing with it and taking care of it and her and us is not an option it’s a requirement. So feel everything but don’t get stuck in it. Kids are better at this than we parents. Your son is totally right about us not knowing how it feels. I reaffirm this feeling with our daughter by saying, you are totally right but I know and love you and I hurt in my heart when you have any kind of pain, whether it’s from unkind words from someone at school or the pain of a flu shot or the disappointment from not making that soccer goal or from the pain of a finger stick/insulin shot. And even though some of those “pains” are not a disease that you have to live with , it’s still something that hurts me because it hurts you, but we are here to teach you strength and endurance through this journey together as a family and that diabetes doesn’t control you…you control it. Third, Managing this disease does become easier. I promise. It becomes more routine. Her dexcom is a huge benefit. I highly recommend a Cgm if you don’t already have one. It will give him a bit more freedom too. As far as him not wanting to eat, maybe try showing him that by not eating he is not in control. Diabetes takes control when you don’t eat. Show him how choosing his food and meals is something he actually gets to choose and be a part of (within reason). Maybe let him choose 3 dinners for the week with help from you or something like that. Anyway, feel free to email me if you want. I’m here to help or just listen.
I’m sorry to hear about your son’s diagnosis. I feel for him. It’s hard being the only person in your school with diabetes. This is why I want to develop support groups in my area to help make diabetics not feel so alone. One idea to prevent your son from crying about the finger poke is to reward him with one his favorite things to eat after. I would also recommend talking with him during the finger prke to try and distract him and take his mind off the finger poke. Also remind him of the importance of the finger poke. My mom has been in your exact shoes. If you need someone to talk to just message me and I can get you in contact with my mom. She is more than willing to speak with you and give advice. I hope this helps! If you found this information helpful please follow my blog at: https://ashleymkuhn.wordpress.com/
a couple thoughts, please check out the local JDRF chapter near you (see the resources tab at the top of this page) if he gets involved he will see he’s not the only one with t1.
look into glucose meters that allow an arm poke instead of fingers. fingers hurt. some kids will be okay if you try to stick the sides of the fingers, believe it or not my niece said “it hurts too much there” and so she ended up using the middle of the finger (I know the meter instructions say otherwise… you never know how much it hurts)
check out the availability of diabetes camps in your area. While it may be a few months away, a summer camp where other t1 children attend will help him socialize, and it will help ease his isolation.
This isolation (only one with diabetes) is a big one and for a 6-year old, it could clearly look like a punishment to him. I don’t know what else to offer. He looks up to you guys for, at the very least, understanding. I realize this would be extra cost for you, but Would it help him if you also tested your blood sugar? Would you consider injecting saline at least for a little while so he doesn’t have to be the only one? Can your endocrinologist help in getting some support? My hospital used to have support group meetings but they weren’t well attended and the ones that were had T2’s and other issues. sorry I can’t be of better help. I think maybe the JDRF has a teddy bear (a t1 teddy bear) that he can “help”. this may also be in the resource tab at the page top…
Try giving him a reward for finger pokes. We used stickers and we put then on a large sheet of paper. The hospital is the one who recommended this for my daughter and after the week in the hospital she no longer needed the stickers and was ok doing the pokes, but she likes doing them herself.
I’m so sorry that your son is feeling this,way. My son was diagnosed 6 years ago at the age of 9 and went through those same exact feelings you describe. He felt alone. He felt the “why me?” all the time. No one understands. We would listen and let him cry and tell him we don’t have all the answers but we will be there for him always. He is almost 16 and still has those moments once in a while but not nearly as often as he did when he was younger. They learn to cope and not dwell on it as they get older. The important part is that no.matter what there are non-negotiable aspects of diabetes like checking blood sugar and getting your insulin and checking for ketones. Everything else will work itself out with time. Hang in there. Also we go to Friends for Life conference every summer. Great place to meet other children and families.
It’s a tough road. I watched my niece & two nephews go through it when we were young. Now I’m watching my 9 year old go through it as well. We are only a year into this…but it’s been a lot of ups & downs. Thats just going to be the way it is. Our Endo referred us to see a child Psychologist. We had our first visit this week. I think it’s going to be helpful. It might be something for you to consider. Hope things are looking a little better.
I echo the other statements here about reaching out to JDRF and finding other families.
I can also say that as the child grows things change. While he was the only child at his elementary school ( and the only child he knew with T1D). He is one of 3 students at his high school. One of whom appraoched him when he noticed the pump tubing and wanted to talk about that.
Overall, pump and CGM is less frequent pokes and could be a game changer for flexibility in bolusing for food choices.
So sorry to hear how hard this is for your son and for your family. My son was 6 also. He is 13 now. He is healthy and an athlete. Tell your little boy that he can grow into big strong boy if he does as he needs to do to keep himself healthy. It’s so hard…sleep beside him. Take it one day and one hour at a time. Don’t hide it. Don’t let people tell you how to manage it. Be strong and proud. Love each other. Remember they are just numbers and you can fix them with the magic of your insulin. Shots are not scary - they are lifesaving. Finger pricks are great ways to see easter egg colors on your finger tips. Test strips are reminders that life is precious. The precious blood pricks that are given daily keep us alive. Glucose tablets give us energy and taste like fizzles. Friends are made at camp. This is hard. Love is good. Be diligent and strong. Don’t give up or give in. Fight for the cure.