My daughter Isabelle was dx Feb 2011 (she was 3 yrs old). She has been on the Animas one touch ping since June 2011. We are having issues with changing her sites. She was so great about it for a long time. She was brave and amazing. Really an inspiration. But now she has been anything but! She cries and has a melt down when I start organizing everything. When it comes time to actually do it, she tries everything to get out of it. Her new thing is " I hate my pump, I hate Diabetes". I feel handling her firm but with lots of love is the best option because we have to do a site change no matter what. She is really lucky to have great numbers, so her endo suggested site changes every three days. It breaks my heart to see her so sad and scared, we are a very affectionate house with lots of hugs and kissed...but it is taking to long! Any ideas on how to make things go smooth again????
oh robin, i feel your pain, my son is 13 and hated pod changes at first they hurt and it was just a reminder of his D, obviously your situation is much more stressful, have you thought of a small reward afterwards, setting a timer to see how fast it can go and then getting a reward? she is so young it must be hard for her to deal with, talking to her about it as it is just another way to take care of herself like brushing her teeth or taking a bath may help, too bad she couldnt have a pump with accesories for her teddy bear or doll, just spitting out ideas, what i really want to do is send you hugs and support, hopefully this is just a phase. you just passed her year aniversery, some say that is a hard time, although she may not remember it well, it may just be setting in with her that it isnt going away. i hope this tough stretch goes by quick, hang in there you are doing your best, i am sure this is very hard on you, one day at a time, you are not alone! amy
Funny thing about your suggestion with the Teddy Bear...I let her put one on me!! She thought it was the funniest thing! We have tried everything. Like I mentioned, she used to be AMAZING! I am not sure what happened...just frustrating. Thank you for your words of encouragement, they are appreciated.
Are you using a numbing cream like Emla. If not, give it a try.
I think our children just go through phases in their T1D care where they just don't want to deal with it again. My son was 20 months at dx and did fine with his shots (he did not start pumping until he was 7) for a good while. Then we hit a patch where he ran from me and just did not want to do them. In the end we simply told him that he had to have his shots to keep him healthy. Sometimes, there is no making it easier. I don't mean to sound cruel, but in my experience, that was the case. We tried a lot of tricks and nothing really made him feel better during this phase. The best we could do was try not to make a big production of it, finish with hugs and quickly move on to a new subject. The phase eventually ended. Now that he is older, of course, we just apply reason to the conversation. Still doesn't always make it better but at least he can 'wrap his head around it.' Hope you get through this phase quickly!
My daughter is 5 (dx at 25 months) on the Omnipod since 35 months. She was very good with her shots until about 6 weeks before we went on the pump by that time - she was really dreading the needles - so when we went to the pump it was easy because she did not have to do needles any more. Now she will fight us occasionally on the pump changes -so I will say " well we can do needles for a while if you really want to"(knowing if she says yes I will have to do it) and then she will give in to the pod change. SHe is a deep sleeper so we will also change her pod when she is sleeping (sometimes she will wake up - but since she was not awake for the buildup and it is already done - she goes right to sleep) - problem with this scenario is we have to wake up later to make sure everything is functioning properly. Not sure if that is an option for you - the Omnipod had an automatic insertion so that might be easier to do when sleeping than the Animas. We also make up silly songs while waiting for the pump to insert. GOOD LUCK!!!
Almost forgot - when she gives us a really hard time - we yell at diabetes. We yell things like I hate diabetes or Diabetes stinks at the top of our lungs for a couple of minutes. Really seems to diffuse the tension and I think then she realizes that we don't like it either - we are in it together. Little silly thing but maybe it would work for you...
My Daughter is 7 and has not progressed tot eh pump yet - we are expecting it in the next couple of weeks. However, Lidocaine cream makes her shots go sooo easy - I put it on and wait 3 or 4 minutes - she doesn't even feel it, Her ENDo said to use it when we get the pump as well. She has her days where she says she hates diabetes and wishes it was never invented - it does break your heart and I think you are taking the right approach - Stay strong - Best Wishes
My daughter who is 8 now still goes thru phases when everything hurts. What type of infustion sets are you using. Late last year we switched over to using a new infusion set on the market made by Spring (http://www.springnow.com/infusion-set.html) What is unique about this set is that it has a one click button to insert the cannula and it automatically retracts the needle. For my daughter this cut down on the pain ALOT and she actually started changing her own sites now. The set is not without some issues but the benefits out way the issues by a long shot for us, especially for pain.
She has reactions to Emla. Thanks for the suggestion though!
We "yell" at diabetes too! I don't like the word hate in our house, but we are allowed to say it to diabetes at site changes!
We only use the steel cannula's. They seem to really work for her (once we get it in) and we have not had to do emergency changes.
My DD has the same issues. She was diagnosed at 4 and is now 7. I am seeing the same issues with her. We do the same thing as yelling and sometimes we do ice on the site to make it not hurt so much. We also sing a song to try and sort of distract her. I am not sure what to do but I wanted to let you know that I feel the same way you do. We yell at diabetes too. A few weeks ago she told me she hates her life! I was floored. I have actually found a therapist that works with children and chronic diseases and made her an appointment. It is hard to give up a little bit of my control but if this therapist can give her a little peace it will be worth it. I hope things get better for you. You and your daughter are in my thoughts and prayers.
Hi Robin,
My son is 6.5 and has been pumping for about 2.5 years (dx'd 3 years ago). I feel like we've been through about 2 "rounds" of time periods like the one you're describing where he was fine with it for a while... freaked out for a few months... then fine with it for a few months... then freaked out again for a few months... and now he's been fine with it for about 12-18 months.
He's gotten so good with it now that if he needs it in the middle of the night, we can ALMOST do it without even waking him up.
During those times we've heard the same things... screaming, crying, "I hate diabetes! I don't want a pump anymore!" We've tried logical reassurance "Honey, you don't want to go to the hospital do you? Do you want us to start doing shot again?" I don't think that was a helpful tactic. We've done all kinds of things as a parent tag-team (which isn't always an option - the two of us together!). Sometimes he'll ask if he can squeeze my fingers while mom puts the inset in and I'll pretend like he's really strong and hurting me a little. He seems to enjoy that. He gets small rewards too for putting up with a set change like picking his favorite cartoon to watch during/after the process. Giving him as much choice and control as possible DOES seem to help!
All these things have helped a little... but for the most part I think it was just a time.
I know it hurts, but I'm not really sure that the pain itself was really the problem. It was more like the anxiety that he created about it. He would start screaming and freaking out LONG before the needle was even ready and when it was all over we always ended-up having this discussion like... wow, that' wasn't really that bad was it?
I guess if I were to give you some comfort - just knowing that others have been through this and that it does get better may help?
We have never found help in things like emla cream or ice... it makes him more uncomfortable and lengthens the process which just adds misery to his day. It doesn't seem to calm him down at all when the cream nums his skin-up - which adds weight to my notion that it's more of an anxiety problem than anything.
When my son was little, (dx'd at 18mo) we just put an ice pack on the spot for his pump for a few minutes. It seemed to help.
I also have a four year old who was diagnosed almost a year ago when he was three. We just started using a pump about a month ago. We decided to go with the OmniPod as I just didn't feel that a pump with tubing was the right choice for us. So far I am trying to keep a positive and open mind about the OmniPod. We love it in one regard, yet feel discouraged by the way our site/pump changes are going. My son freaks out when it's time to do one and goes into full blown meltdown. With the Omnipod there is a large "click" when it self inserts the cannula. I wore one, and it really doesn't hurt, it's just the click is a little intimidating. Once it's done, it's like it never happened and he feels nothing. I literally had to wait until my husband was home to have him help/hold him down. Bribing him worked for like a second. Last night (after changing sites only three hours earlier) I did a site change while he was asleep. It was the smoothest pump change yet! He woke up and was confused that it was now in a different spot, but was so happy that this one "didn't click"!
Have you tried giving him headphones with music playing or some other distraction so he doesn't hear the click? Just a thought.
Daneenm, I have thought about doing this w/ my dtr as recently after a year and half of "no big deal" on pod changes it's starting to creep up to an issue of fear. And it is totally the "click"!!! Gonna try it, thanks!!
My son started wearing a pump at 18 months. Just like you, he was amazing with it until he was about 2 1/2 (he's almost 3). We talk about it everytime and explain why we are doing it, but a 1/2/3 year old doesn't really care. I do anything to distract him, and I have to change the distraction every couple of weeks because it doesn't work anymore! TV, lollipops, straight sugar, chocolate, someone singing and dancing in front of him, etc etc. I am just resigned to the fact it's typically going to be a challenge until he can get big enough and rationalize it. One thing I tell him is that it's OK to cry, and that it can hurt, and that seems to help. I put a pump on myself and it didn't hurt, but my kid is as skinny as a twig and I have fat to spare.
I like the headphones idea though - gotta try that one.
And is anyone as sick as I am when you see a fat chubby baby or toddler, and think wow I would have so many places on that kid to stick a pump or a sensor ....