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Worse before better?

Discussion in 'Parents of Children with Type 1' started by KylorsMom, Apr 7, 2013.

  1. KylorsMom

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    Hey guys, today is our three week d b-day, it seems like it has been months though! So for those of you who had resistant little ones... did it get worse before getting better? Our DS is three and last week it seemed to be getting easier to give insulin and finger pokes but the last few day we have gone from getting a little easier to darn near impossible. To his credit we did have a (insert bad word here) lancet device break while using it on him... there was blood everywhere, not pretty!
    We (my hubby and I) are barley hanging onto our sanity at this point, we are still working part time, switching morning and evenings to keep our job but I am not sure how much longer we can keep it up. Financially we are just destroyed, we had been going through some financial difficulties before the reduced work hours and helicopter bills... sorry just need to vent sometimes.
    ANYWAY back on topic, if your little one had a hard time what did you do? We have tried distraction and bribes... he is having none of it.:(
     
  2. MomofSweetOne

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    My daughter was older at diagnosis (10/11). We were told in the hospital that we would arrive at New Normal within two weeks. That was the worst thing we were told at diagnosis. NOTHING could have been further from the truth. That was the point where the exhaustion was truly taking its toll, the "We can do this!" confidence was wearing thin, and my daughter's anger at diagnosis was coming out. We were dealing with kicking battles when I needed to do a correction dose, she was saying that she didn't belong in our family because there was no one like her, and the worst of all, that she wanted a different mom who was like her. Weeks 2-4 were an experience I'd never want to live through again. Ever.

    Take a deep breath and plan time for you. Things get better about 3 months in. You're not alone; reach out when you need to like you just did. The burn-out days will still come sometimes (I'm in one), but they are few and further and further between as time passes.
     
  3. shannong

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    Hi Kim,

    So sorry to hear that things are not going well. My son was 6 at diagnosis so older than yours, which I am sure makes it easier. I do recall though that there were periods of setbacks in the beginning. Looking back, I think I went into the whole giving a shot with my own anxiety which didn't help my DS. Knowing now that shots are something that kids totally can get used to and it is now something that is literally almost nothing to my DS (other than the occasional time he says it sort of stings), I would try to approach it with not so much anxiety myself. More of a "this saves my child's life" attitude. A necessity to get done quickly. I did find that doing it quickly and getting it over with to be essential. My husband stills tends to take a long time giving shots and my DS gets really annoyed by this. In fact, he got really upset the other day when Dad was trying to get him into the perfect position to give the shot and my DS eventually said "can you just stop talking about it Dad". The other thing that really helped my DS when he was having a hard time was having his friends over. He just loved his friends being all intrigued by the fact that he was getting a shot and he used to just want to get it over with quickly so he could continue playing with his friends. Anyway, I don't think there is any perfect solution, but I do think that it is probably more like a phase and will get better. Until it gets better, I would try some highly distracting situations. You know, like let's get the shot done, so we can go play at the park. That sort of thing. Good luck.
     
  4. hawkeyegirl

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    My son was also 3 at diagnosis, and was very resistant to shots and finger pokes. It's hard for me to remember now exactly when he started getting used to finger pokes, but I would guess it was a couple of months or so. I do remember that when we moved to the pump at 5 months, he was still protesting shots at that point, so I don't know how long that would have gone on if we hadn't moved to pumping. With pumping, we could use numbing creme for site changes, and they only occurred every 3 days on average, so that was a huge improvement for our mental well-being. Holding your child down while they scream a few times a day for shots is enough to drive anyone over the edge. :(

    What lancing device do you use? We have found that the Accu-Chek Multi-Clix is one of the best out there. We've never used it, but the One Touch Delica gets very good reviews as well. You might want to try some different lancing devices to see if any of them are an improvement.

    But the sad fact is that lancing your finger does hurt a bit - try it on yourself. It's not exactly a kiss from butterfly wings. And the same goes for shots. Your son will get used to both of them, but it will take some time. And your heart will break a little bit every day until he does. Believe me, I've been there. We tried bribes and rewards and letting him pick the finger or the spot for the shot. But we quickly learned that the best thing to do was to get it ready out of his sight, grab a finger (or an arm or leg or whatever), do the poke or shot, and be done with it. Anything else just prolonged the misery for everyone.

    The very best thing we ever did for our son was to do go on the pump as soon as we were able to take the pumping classes. I don't know how you feel about pumping, but it honestly gave us our "normal" life back.

    Many hugs to you. I was where you are now 5.5 years ago, and it is so, so hard. But I'm now the mom of a happy, healthy 9 year old boy who sees finger pokes and pump sites as minor annoyances. You will get there. You just have to survive these next few weeks and months. :eek:
     
  5. Jennifer126

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    I don't know what we would have done if they hadn't let us leave on the pump. I was so afraid of doing exactly what you are doing now. We did have issues with the site change but have started doing it in his sleep. We check all night anyway so we would catch a problem with the site.... I tell you one thing, in the hospital when we were doing shots, there wasn't much sympathy from us. It was more... this has to be done and we were focused. I hear if they see you feeling too guilty then sometimes they go for it. Kinda like when you drop your kid off at daycare or pre-school, they scream till you leave..... Not saying that hugs and sympathy can't be given or that coldness is the way to go but the normal parenting balance. I hope things get easier for you!
     
  6. SandiT

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    Well, our daughter is six, so I know it's a little different, but I took a very hard-line stance with it after a while. I gave her compassion for a time, but after that, I started telling her, "We ARE going to do this. If we have to hold you down, we will. It's your choice whether it happens nice or happens hard. I refuse to let you get sick and die, so you are getting your shot."

    I know you're supposed to be understanding and kind towards them, but at some point, you have to be firm. Understanding and kind is for after. Give him all the love and joy you can afterwards.

    But while it's ongoing, we had to just tell her, "this is happening. I love you too much to let you get away with no shot."

    Then later, I'd tell her, "there'll come a time when you're the old pro!" I think that's the key, find something that he likes and equate it with that. Does he like dinosaurs? Does he like trucks? Dolls?

    Whatever he likes, find a way to connect it to that. "Want to see how T-Rex takes his shot? Let's give T-Rex his shot and see what he does?" Give "t-rex" a word that he says while he gets his shot... "Rawr, rawr, rawr" while he gets his shot. But he doesn't squirm or kick or bite!

    If he likes trucks, then remind him to be like a Mac Truck. A big old Mac Truck wouldn't be bothered by a little finger poke, by golly! No way! Are you a mac truck? You show me how you can be a mac truck! Honk your horn while I give you a shot, though. Say "honk" over and over so I know that you're a big mac truck! (Role play it without a shot often, too).

    And tell him, too, that it will help him relax if he blows a bubble while he's getting his shot. When you're blowing outwards, your body relaxes, so it's not just talk!

    But giving him something to do while he does it, something proactive that can help focus him, may be really helpful. You've got relate it to something he likes if you can. "I wonder what Curious George would say while he got a shot of insulin or a finger pokey? Do you think he'd make monkey noises?"

    Get him engaged in proving something or showing what a t-rex, a mac truck, or a good monkey he is. What a pro, etc.

    And tell him that it's going to happen. Don't say you're sorry. You're not sorry, because he'll get sick and die if you're sorry enough to stop doing it. So get in there, hold him down, and tell him that this shot or finger pokey is happening. He can be a mac truck or a t-rex or he can cry and fight the way a baby would. But it's happening.

    I'm sure that people will say it's terrible parenting to DARE say that it's going to happen no matter what, but you know... sometimes you have to be honest even with little kids.

    This is his life, and trauma or no trauma, it's not going to change anytime soon.

    Do the best you can to be matter-of-fact. "We can find a way together to make this less traumatic, or we'll hold you down every single time. But I promise you, I WILL DO IT. And I will do it precisely because I love you too much to let you feel bad like you did before the hospital."

    Since you had such a bad experience, you might say, "I AM sorry about what happened, but that's not normal and it isn't going to happen every time. What is going to happen every time is that you're going to get a shot/finger poke. It'll be as gentle as you let it be by how much you cooperate."

    He's 3, but he's not stupid. He'll get it as you tell him over and over again. And the better he acts when he does it, the better things go afterwards.
     
  7. Sarah Maddie's Mom

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    Tell us what lancing device you are using and what type and size syringe. They may not have given you the best, most comfortable gauges and lengths when you left the hospital.

    Living with Type 1 is always something of an emotional roller coaster. Granted, the periods between the free fall times tend to get longer, but the emotional drops never completely go away...
     
  8. cdninct

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    Yes, it did get worse first. K was 2-1/2 at the time, so close in age to your son. It was a novelty at first, and he was interested to see how it all happened. When the novelty wore off, though, things did get tough for a while. I agree with those who asked about your lancing device--for a while, he liked shots better than checks, and it turned out to be the lancing device. When we switched to the Freestyle Lite meter with its lacing device, and later the Delica, things did get markedly better.

    While I think talking about going "tough love" might be a bit extreme with a three year old three weeks in, I think that the basic idea that diabetes care has to become a non-negotiable part of the routine is good. We do checks now. We do shots now. That's just the way it is, the same as we brush teeth and get dressed. We used to talk about what would happen next as we did what had to be done (as firmly as we had to)--"as soon as we finish this check, we get to go to the park/eat dinner/watch TV/read a story; let's get this over with quickly!"

    It seems like these early days would last forever, but they didn't for us, and they won't for you. In some ways, I count myself lucky that K was so young when diagnosed--I think it made the transition easier, as preschoolers are so much more malleable (even the inflexible ones, like my little guy!).

    Good luck!
     
  9. KylorsMom

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    Thanks guys, we have been very firm with him, it's just the chasing/hiding/kicking/ finger clenching and squirming..:cwds:
    And actually once it's over he is just fine... until its time again
    we have the true test meter and lancing device (we totally HATE the lancing device!!!, like I said, we have already had one break, and half the time we go to finally poke him one we have got hold and unclenched a finger... only to have to re-pump it ugh!)
    We talked with the endo about a pump and she said we could look at starting one at our next appt... we probably could have pushed harder now but I felt like we needed more time before learning all the pump stuff. Once we get there I will have a million more questions lol... but we will stick with this for now.
    Have you guys been able to buy other lancing devises to use with the meter your insurance covers?
     
  10. Sarah Maddie's Mom

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    A lot of folks use this one https://www.accu-chek.com/us/lancing-devices/multiclix.html and claim that it's the least painful. You can buy the lancing device OTC but you'll want a prescription to cover the drums of lancets.

    If you are not using the thinest and the shortest needle for your syringe then you will want to get a prescription for that. I think the BD ultra fine is the thinest, and in the 6mm http://www.bd.com/us/diabetes/page.aspx?cat=7002&id=7405

    These little things make a big difference but one that is often overlooked by the prescribing Dr at discharge.
     
  11. Megnyc

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    You really need to get an accu chek fastclix. It is probably the closest thing to painless out there. Call accu chek: 1-800-858-8072. They will overnight mail you a lancing device with sample lancets for free-- just ask. They should also send you a sample meter with sample test strips. I personally like the Aviva if you get a choice, but the nano has a light which might be important to you. The test strips slurp up the blood way better then the ones you are using right now. Just reuse the lancets if you run low until you can get a prescription for them from your doctor. If for some reason accu chek won't send you one PM me your address and I will get a few unopened ones in the mail-- I probably have extra boxes of lancets too. I have used the lancets that come with the true test meter (forgotten test kit while traveling :rolleyes:) and they are pretty barbaric compared to the accu chek ones.

    Also, just wanted to say it gets easier. I was a bit older then your son and I pumped from the beginning but there were times my parents had to chase me around the house to change my pump site. Now, I am away at college and it just takes me 30 seconds every few days to change my pump site. I don't even notice the finger pricks anymore. Diabetes is a really tiny part of my life and it will take awhile but you guys will get there as well :cwds:
     
  12. cdninct

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    You can get a Delica lancet from a drug store without getting the OneTouch meters. I don't think they are too expensive but, to be honest, we always just get them for free at endo appointments. If you are not too far away from your clinic, you might want to phone and see if you can get a freebie lancing device (or even a whole meter!) from them.
     
  13. momof2marchboys

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    Our son was almost 6 at diagnosis but he is a very headstrong and determined little boy. We found that switching to the One touch delica was great bc of the multiple settings and he gets to help push the button to do his test.
    Also we refused to do syringes as I read that the bd nano needles for insulins pens were easier on kids. So we demanded pens - it was a fight with one of the CDE's in our training.
    At the time of testing and giving his shots we let him choose which finger and where the shot went and also help prep the area with the alcohol wipes. We also had a spot in the house that we did this in each time. We have since moved to testing where ever and when ever.
    We have since moved to a pump and sometime have issues at site changes but it is getting better.

    I have yet to pay for a meter or lancing device out of pocket. The companies and insurance have always paid for them
     
  14. KylorsMom

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    We have the BD nano's for the pen, we originally got the wrong ones from the pharmacy and our endo was super mad at them, she said they were not supposed to substitute at all, gave us a box of 100 and put in a new script... our endo group is pretty amazing when it comes to looking out for the kids, and they are also really big on the parents having a big say. Almost all of them are type 1 or have a close family member who is so they really get how this is really something the whole family is involved with... SOOOO thankful for them.:D

    I'll check with them to see if we could get another lancing device, the one we have now takes a generic lancet, so we are able to use any of the gauges, and we have about three hundred lancets. Any ideas for a better device that would use a normal lancet?
     
  15. greenpalm

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    I concur with the good opinions of the Accu-check fast clicks lancing devices. Eleanor was given samples of several lancing devices in the hospital, and the educators let her choose. Some of them were painful, that one wasn't. Letting her choose gave her some sense of power and control. I agree too, that letting the child choose the finger for the check and the injection site is another way of giving them some measure of control.

    She has been remarkably cooperative about the injections. I think that's just her personality, we have been lucky. However, she happens to be taking liquid keflex for some ant bites on her foot. And we get plenty of resistance to that. She will eventualy take it, but we have drama every time. In that case, I think the difference is that she has to do it herself, whereas I just do the sticks for her. She has done her own finger prick once, by request, but she hasn't been able to work up the nerve to do it again. I have told her that I will always help her if she needs it.

    She is usually realy looking forward to the meal she's going to get after the injections. We let her choose which of her stuffed animals she is going to hold during the injection, and that helps a little. She did run from me and try to hide once, just last night actually, but she was exhausted under unusual circumstances and we worked it out without too much hysteria.

    Regarding it getting worse, we had a bad spell of real sadness with her. It was maybe a week or 10 days in, and she just sobbed and said, "I just want my old life back" That just about killed me. It was close on the heels of us having to tell her that she can't go to Girl Scout camp. So, that definitely got worse first.

    I wish you luck. I'm sure it's harder with a three year old. I imagine there are generally different ages that go more smoothly than others.
     
  16. nanhsot

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    No matter the type of meter used (has a ton of them, different brands), he only uses the Accucheck multiclix or Fastclix For a really young child look into the OneTouch Delica. You can buy any single pricker separate from the meter and use it with your preferred meter, just ask your MD for a prescription for the lancets.
     
  17. Amy C.

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    Both the delica and its lancets are not very much money and worth the cost.

    My son was the same way -- but mostly for shots.

    We used the inject ease to quickly give the shots and had a gentle lancet.

    It was six weeks before one person could do the care. Distraction is the key. I read to my 3 year old while doing the shot and that helped.
     
  18. Sarah Maddie's Mom

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    This was a life saver for us as well.
     
  19. kirsteng

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    We have a 3 year old boy as well, diagnosed 3 1/2 months ago.

    Lancets: I couldn't agree more with prev. posters. We had one we were given at the hospital that was painful to use.. we switched to the Delica as well, and dial down the settings to the smallest possible for that area. For instance, toes have thicker skin so often need to be set at a '4', whereas most fingers are a 2 with the thumb being a '3'.

    Meters: We switched to a BG Star pretty quickly (got it free with an online downloadable coupon). Research which meters have the smallest sample size.. you wouldn't believe the difference. We had the One Touch ultra mini for the first month, we were given it at the hospital. We found out that the sample size needed (the size of the drop of blood) was double the size/amount of the one we now have. No need to sQUUEEEEZE out extra blood all the time to avoid an error reading... that got tired pretty fast.

    Personality: is really a huge factor in how your child will handle things. If it had been our eldest child, I just know it would have been drama and histrionics. Thankfully for us, our 3 year old is a really easy going guy who took things in stride, never even cried for a single shot ever. However he has on some occasions tried to say 'no' or hide etc when he saw us coming to check (more in the first 6 weeks or so - now he's bored with it all). We were also in the matter-of-fact camp.. said it's just a little prick, let's get it over with so we can eat etc. We also put on his favourite shows to distract.

    Our little guy REALLY likes to take charge of things though, so we let him do as much as he can. When he was starting to say 'no' when we approached with his meter, we asked 'do YOU want to do it instead - all by YOURSELF??!" He was thrilled with the idea. We let him choose his finger, take out the wipe, clean it, then we went over how to hold the lancing device, how hard to push (push it HARD on the finger, that way you can use a lesser setting!) and where (sides of fingers). Then we let him do it. He was sometimes unsuccessful on the first attempt (doesn't push hard enough) so I'd just dial up the setting one or two so it will work regardless of how little pressure he uses. Made a huge difference for us - that HE has control of it instead of being at the mercy of needles and sticks all day long. Obviously doesn't work for the needles, but we do let him wipe and choose the spot it's going to go - every little bit helps I think with this age.

    Good luck and keep your chin up - I can say at 3 1/2 months that it's definitely easier. Still hate it, but we're managing really well with great numbers.. things have fallen into place.
     
  20. greenpalm

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    I thought of something else that helped. I took one of her used syringes, and got the needle nosed pliers and pulled the actual needle out, but left everything else. I then took red acrylic paint, and painted each piece with a stripe of red paint. (That was so we'd all know these were the "toys") Then I gave it to her to play with. She got another free meter that we don't really use when I attended an education class. We may use it for a backup if we ever run out of her test strips or something, but it's not urgent. So I let her play with that one. She has decided that all her stuffies also have diabetes, just like her. In fact, I made this video of her. Maybe your son would even feel better watching the video, maybe it would inspire his own insulin "play."

    http://youtu.be/sbCfc9lFddg
     
    Last edited: Apr 8, 2013

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