This is a group for the parents of kids with diabetes.
That's why we're here, Garry. Really.
Garry,
I've felt just like that many times. Especially within the first year or year-and-a-half. It was all still so new and the loss felt so much more acute. From the picture on your profile, I'm guessing you have a preschooler with T1D? Don't know exactly what that's like -- our son was diagnosed at age 7. I imagine I'd feel more anger with a younger child diagnosed. We're just over 2 years in, and the unremitting demands can be depressing at times. That being said, when we've accomplished new things IN SPITE OF the diabetes, or we see how brave or courageous our son is in difficult or new situations, or we can make fun of the diabetes, it is uplifting. The pendulum has swung both ways -- feeling angry, like we've been victimized -- to feeling empowered and hopeful.
When we were first diagnosed, everyone said stuff about getting to the "new normal", as if getting there is a foregone conclusion. I imagine that everyone's path is different and everyone's pace is different. There is no "rush" to "get over it", but if you and/or your loved ones are really being affected by your anger and grief, there could be a lot of value in talking to a therapist. We found a professional who specializes it diabetes, and it has been so helpful to us in validating our experiences and giving us alternative ways of talking about and thinking about the diabetes. Just know that it's possible to be happy again and not feel trapped by the diabetes all the time. The better we can cope with it, the better our children will be able to cope with it as they grow up living with it themselves. I think that's what we all want for them, and so we have to find a way to make that happen. It's one of those really important aspects of managing diabetes that CDE's don't talk much about, in general.
Thanks for being brave enough to speak up about it.
Take care.
All - The comment by Gary and all the responses reminded me of a study "Chronic sorrow in parents of children with type one diabetes" published in the Journal of Advanced Nursing (2009) I have attached it here. Chronic%20Sorrow%20in%20Parents%20of%20Children%20with%20t1d-1.pdf.I have attached it here -
Hi all! My daughter, Aden, was diagnosed with type I at age 11...she is 21 now. It's still a battle for her. I don't want to be doom and gloom. My daughter has been "diabulimic" on and off for many years. Her last episode was in January. She lost over 20 pounds and her hair has been falling out since. I hate diabetes.
Aden’s mom. I have been a Type I diabetic for over 40 years. I was diabulimic, as well, through my late teens and early twenties. I sent you a friends request so that we may communicate about this on your page.
Barb - thank you for the link to the research study. The science reinforces and experience we all have in one way or another. Thanks again.
Dose anyone have any therioes on how there children camre to get type 1 and how old were they
Yeh Nathan was two when diagnosed, which was in June 2012. Can't believe we didn't really notice the weight loss and other sympyoms until we NEEDED to take him to hospital. That being said, I know there would have been nothing we could have done to prevent it if we had noticed it earlier. I remember sitting in the hospital having a coffee when I saw a leaflet on the wall. The leaflet was showing the symptoms of T1 in a child and after reading it I was so angry because Nathan had all of the symptoms but we hadn't noticed. Like all of you I have better days and some not so good days. There sometimes, even when you think you're managing it properly, seems to be no logic to some of the readings we get. My anger is never aimed at Nathan but at myself. I cannot answer that but will always try my best to manage his T1 to the best of my ability. Lots of love....Garry
Well, how could you possibly have known? For my part, I'm a medical editor, and I *did* know the symptoms... and even so, it's still not an easy call to make, and it took me a while to make it. Most of the signs, in a child that young (my son was a year and a half), could be put down to teething or some other infant quirk. I was thinking about the possibility of diabetes for a full two weeks prior to taking him to his pediatrician, and wondering if I was overreacting about it. The only reason I finally made the appointment at all was because the day care provider called and said she was seeing the same things I saw at night, during the day. I just couldn't believe an 18 month old could develop it, and it wasn't until SHE started saying something to me that I acted. Did I beat myself up over it? Maybe for a nanosecond, but in hindsight, taking him sooner wouldn't have changed anything... maybe he wouldn't have had DKA, but he still would've had diabetes, and it still would have been a week in hospital and it still would've sucked. So there's not much point in wasting energy on anger, at yourself or anyone else. We are not super-human people, we parents. We can only do the best we can with the information we have. So cut yourself some slack.
As for logic... ha! every time I start trying to make sense of Eric's blood sugar readings, you know what my endo says? "You know what I think?"
"What do you think, Doctor?"
"I think... your child has diabetes."
He's a funny one, this doc. His point is that in diabetes, s**t happens, and you can't always understand why, so you just have to learn to roll with it.
Elizabeth - our stories are soooo similar. I'm a copywriter and for 18 months I wrote a newsletter for a diabetes company, so I knew all the symptoms. The Saturday my daughter started with the thirst and peeing, I knew instantly what it was and I was freaking out - then the symptoms went away after two days and I took a wait and see approach - I decided it must have been some freak thing and that I had overreacted. Then the symptoms came back the next weekend. Yet I did nothing for another week. It was only when the director at our day care called and said that Liz had been asleep since she had gotten to school that reality slapped me in the face and I took her to her ped. Who confirmed what I had feared TWO WEEKS EARLIER. She was in DKA and spent two nights in the PICU. So Garry, talk about beating yourself up. I was so ashamed and mad at myself that I didn't listen to my intuition after those first two days. Like Elizabeth said, it wouldn't have changed the outcome, but maybe my daughter wouldn't have been in DKA and had to have an insulin drip for 24 hours. But as parents we don't want to believe that these things can happen to us, to our children, which can hinder our ability to act.
I was writing test questions for the USMLE's until fairly recently, and almost all of the educational materials aimed at student doctors address the subject of diagnosing T1D in preschool children with variations on the phrase, "Correctly diagnosing type 1 diabetes in preschool children is difficult, because the symptoms resemble so many other illnesses common to young children." Not to mention the fact that my pediatrician, who is head of pediatrics for one of the two main hospitals in Portland, said that 99 times out of 100, when he gets a kid in with the "typical" diabetes symptoms, he tests the child for diabetes and it's negative — more usually, it's a UTI coupled with a GI bug. That, in a nutshell, is why I don't feel even a little bit guilty that it took me so long to take him to his doctor. After all, look at the odds involved: the chance that I was wrong were much greater than the chance that I was right. (My one regret is that I didn't go buy a lottery ticket that day...)
I have an 11 year old adopted son that has type 1. He has been with us for 5 years of which 4 were with a pump. He was cooperating just great. Now he is sneaking food, lying,it is crazy...he has actually gotten his other blood checker out to show is "good" numbers to us and he never corrects what he knows is high. His A1C went from 8 to 13. It took us awhile to figure out what he was doing. It is strange because we have always made it clear he could eat almost anything he wanted...but yet it continues. Nothing seems to affect him. Not sure what to do with him.
I have heard about the same things happening. We were at diabetes camp and one of the parents mentioned the same thing. Some of the suggestions were to take back some of the responsibility sometimes they just get overwhelmed and they don't know how to ask for help. I found that if you know of any other T1's in your area or if your endo is willing to put you in touch with another parent that has a child around your age maybe seeing someone else that is doing well could help too. Camp is also another option my T1 daughter who is 8 diagnosed at four is going to Camp Najeda this summer for the first time on her own for a week. We have been to two years of family camp which is only a weekend but a great way to meet other parents. We met three families from our area one of who had met my daughter at day care when her daughter was diagnosed and was looking for daycare. I hope this helps. Keep your chin up.
@fluf I totally get where you are coming from re: your son's 'non-compliance'(though I hate to use that term) Add your comment to the +Add a discussion loop above and you will get more feedback.
Sorry to say that this is so common - we went through it with our son Malcolm at about the same age ... and they do know how to get the meter to show only the numbers they want etc.!! They are all clever and smart - and doing what tweens and teens do by pushing the envelope and being prickly (!)...that being said how to handle a potentially dangerous and self-destructive trend? What I did was have M check his bg in front of me - not making a big deal case of it which would still give him the 'power' and continue the struggle- I just told M he could fool around on his own but I still needed to keep him safe so I would have him do his bg check in front of me... at school he already checked in the office (his choice) so I knew that number was valid. As far as the food - don't freak out about it - if you have him check his bg at the breakfast table and see what he eats then give the bolus - if at lunch his bg is high - correct it. If his bg is high after school - correct it...and so forth - when he gets home form school or you pick him up - have him check the bg - and so on. Soon he will tire of this - or maybe not - lol - M is in 1st year university now - and we laugh together when I say - bg? before he runs out the door when he is home on holidays - he laughs pulls out his meter and checks his bg in front of me!!
So my advice - be calm - take control and don't yell. Thank him every time he checks and smile and hug - really deflate the situation.... tell him you understand he is flexing his independence and good for him! but in the D world it doesn't work so well so you need to take over for a while and give him a break.
Try to remember that this to shall pass!
Let me know if I can be of any other help!
Barbi (child with D = Malcolm dx@2, 1996)
Ok Moms of pumpers - we switching to a pump after doing injections since diagnosis. I need to know honestly what to expect and how hard is it? Realistically how much time should I take off from work for the transition. I was also wondering if I should have my mom come in from another state to help. I have heard so many different accounts - some say it was easy to make the switch and others say it was a 6 week thing and they wish they would have taken FMLA for it.
Realistically? I think you probably should take the time off if you can, if only so you can put all your attention toward learning what they have to teach you. It is not that pumping is harder so much as that it is different, and there are different things you need to pay attention to. Like: with shots, you never have to wonder if the insulin is getting IN, you just have to wonder if you've given the right amount at the right time. With a pump, the calculations are made for you, but there's also the possibility that a pump site is "bad" (meaning, cannula crimped or blocked), so the whole "is the insulin getting in" factor looms much larger.
We did not have an easy transition in large part because there was information overload going on — I did not take time off for the training/transition, and in retrospect I wish I had. Read up as much as you can about it before hand, because it's not just about which buttons to push when; it is literally a different type of therapeutic regimen, and much of what you may know from giving shots is either inapplicable or less important with a pump.