I was diagnosed with Type I on my 16th birthday, many years ago. I handled it well back then, and continue to do so after many years. A friend of mine has a daughter, now age 6, who was diagnosed last year when she was 5. She had been pretty accepting of her diagnosis until recently. Her parents put her on a Minimed pump for about a year. She/they disliked the insertion routine. They switched her to the OmniPod. She’s been even less happy about that, with a number of failed Pods, Pods pulling up from the skin, etc. Now she is on a “pump holiday,” but seems to do nothing but complain that she has diabetes. She just wants to be like all other kids. I have a hunch she now realizes how long “forever” is (with no cure in the immediate future.) She is likely having a delayed grieving process over the loss of the spontaneous and carefree life she used to have.
If anyone out there was diagnosed as a young child, and could give me any advice to share with this little girl’s Mom as to how they came to terms with their diagnosis, she would greatly appreciate it.
Thanks!
Well, I was diagnosed in 1970 @ age 7… and honestly, that was so long ago I really don’t remember coming to “terms” with it…
With anyone, there is a grieving process, and you are right, she may just now have realized what this all means. Kids can be mean and being “different” in anyway can make life difficult, or at least make her think it is an issue.
Let her be a kid, do things the other kids do (within reason… no eating the entire batch of cake icing!). She needs reinforcement that she is not “broken” and, for her, normal is the extra stuff that comes with diabetes. A support group with other kids her age might help in that regards.
It is hard for her parents too, they want to protect her, probably feel guilty that it was her, not them. Kids are smart and can pick up on a lot of things that we don’t think they can. They may be projecting that guilt and she’s might be picking up on it and feeling guilty because it is “her fault” that they feel sad.
It would probably do good for the parents to find a support group as well and there is nothing wrong with talking to a professional counselor if this doesn’t pass soon. Maybe their endo could recommend someone
This might not come out sounding very sympathetic, but I believe in complete honesty.
Part of the problem might be the inconsistency on the part of the parents. If she’s had diabetes for less than two years, and has already gone through two different pumps, there is a problem. A large part of life with T1 is routine. We all have certain routines that we follow to make life easier and more manageable. We’ve got so many different things that we need to keep track of (testing, eating, exercising, taking insulin, etc.) that without a consistent routine, things get lost.
I would suggest that, as the first step in helping this little girl come to terms with her new life, she starts using a pump again ASAP. Sure, nobody wants to wear one, and it’s not fair that any of us have been dealt this crappy hand, but it is what it is. Six is far too young to be calling the shots. If she doesn’t like the pump (or the Pod), it’s too bad. She has to learn that this is what her life is, and at six, she’s not likely to accept that anytime soon. It’s up to her parents to be parents and ensure that caring for her diabetes is a priority. It has to be.
From what you’ve written, it sounds as if her parents are having just as difficult a time dealing with diabetes as the daughter. Is there a CDE in their treatment circle? If not, I highly recommend that they seek one out to get a handle on things. Another step might be for the parents to join a support group or online community to see how others have handled it (instead of you doing it for them).
I’m not trying to be harsh, but as I’m sure you know, diabetes is a full-time job. Without the full support and commitment of her parents [to her treatment], her health will be jeopardized. That is not fair to this child.
I’d recommend counseling/therapy for the family. Diabetes with a young child is a family disease and I’m sure all of them are having issues with whats going on. I’d also suggest finding a support group, and if there isn’t one for young kids, they should start one.
It breaks my heart hearing about a child with diabetes. I know how I struggle with this disease at 41, being diagnosed at 28, I can’t imagine being 5.
It took me more than 30 years to get my first pump, which was the OmniPod. It worked O.K. for me for the first 6 months, then I began to have problems. When I got my MM Paradigm 522 with CGM, it took me a long time to feel comfortable changing the infusion sets and reservoirs. One advantage I can see with injected insulin is that once you’ve injected it, you know it will work. Insulin pumping has a zillion advantages, but sites do go bad, one can get a kinked cannula or hit a blood vessel. I think these parents have had bad luck with their chosen pumps! Perhaps the child’s “pump holiday” will make her understand better the ADVANTAGES of an insulin pump. That’s what I’m personally hoping for, as she began pumping almost immediately after diagnosis.
I was diagnosed at 5… For me it was a this is the way your life is…
Probably the best thing that would help is to have her meet up with other kids near her age that also have diabetes and helped me a lot…though maybe she’s too young?
I also think that routine, like Shannon suggested, really helps too because it helps to show that while it’s not what all her friends are doing it’s “normal” for her… and becomes routine…less scary and a little bit easier…
I also agree with other’s comments about the impact her parents have on her acceptance… one of the things that helped me was that my parents just treated it rather matter of factly…but they also acknowledged that it wasn’t fair and that it was work…my dad went so far as to inject himself (just stuck the needle in) to get a better feel for how to inject and how it actually feels… I think their acceptance helped me to accept it… at least until my teen years
Nine years ago I was diagnosed with T1 diabetes. I was also was 16 years old. They think I took it well at first. This was October 2000 till February 2001. Well in February 2001 I went into the hospital on a suicide attempt as I couldn’t take it anymore. Between school staff and the students I couldn’t handle things anymore.
To this day I still have depression technically it’s bipolar 2 but that’s another story. If doctors would have realized sooner what was going on with me then maybe things would have been different. My mom had even mentioned them to my doctor at the time.
