Skipping Meals to Avoid Injections

General
1

I'm posting this to the larger community because I need to hear some "been there, done that myself", as well as from some parents who have worked through some similar issues with their children. 

After over two months of mostly compliance, our 8-year old son has begun a quiet rebellion.  He is choosing to skip meals and not eat to avoid the insulin injections.  Obviously, this is not going to work for long because he's got to eat, but it also can't be good for managing his BS, and I suspect he might start sneaking food to avoid injections.  It's not out of stubborness that he's doing this; he's not a stubborn, manipulative child.  When he says "this is what I need" or "this is how I feel", it is the absolute truth.  He hates having T1, he hates the testing, he hates the injections.  He does not want diabetes, and keeps saying he wants to "be normal".  I'm doing my best to support his emotional processing of this diagnosis, but find myself sometimes having to choose between his emotional wellbeing and his medical needs.  I am not going to force him to do anything that he cannot emotionally tolerate, because he and I have to hang on to as much of a trusting relationship as possible if we're going to work through this together.  I told him today that he didn't have to eat lunch and inject, and I wouldn't force him to eat or dose if he didn't want to, but that I had to test him every two hours so we could keep track of where is BS was.  That was enough to refuel the emotional melt-down we were in the middle of.  And, yes, he does understand that getting too high will make him sick, and we'll have to take him to the hospital, which is the worst of all fates for this kid who is terrified of doctors, hospitals and needles.

I talked to him several days ago about the possibility of an insulin pump, and he waivered back and forth between "that would be great" and "I don't want another invasion of my body".  I went ahead and order the dummy Pod from OmiPod, which should get here in a couple of days, so he would have something concrete to associate with a pump, and so he could see exactly what it involves.  Today he wanted me to go out and buy a pump "right now!" so he could avoid injections, and he doesn't understand why I can't just run out and buy a pump at the pharmacy, or that a pump will not make it all go away.  (He has a learning disability that inhibits his receptive and expressive language ability, just to make things more challenging).

So, I guess what I need to know is, how long will this quiet rebellion last?  After a brief spurt of non-compliance, at the age of 8, can we expect him to hop back on board the D-train?  Or do we need to arrange some time with a diabetes counselor to help him through this?  His next appointment is two weeks away...can we just see what happens until then, or call the endo or DE and get more specific advice?

Any and all input would be greatly appreciated.

Worried mom (is there any other kind on this site?)...

Mo

 

2

i think a diabetes counselor might be a good idea to look into, someone he can go and talk to alone without you being there and maybe another time with you present. a quick call to your diabetic team would be a good idea for some tips though too!

i don't remember what i did the first few years, as it was so long ago..but i don't doubt i did the same thing about injections...so i sadly don't have much good advice!

i can say sadly though, the rebellion is something that won't end now. i rebelled as much as i felt i could during my teen years. yes girls are the worst with their moms in those years regardless, but still.

when i was a teenager(and even when I was a kid) my mom did the "i don't care if you don't wanna eat or take a shot. you're going to do it because i say so" route a lot of the time, though she'd turn around and break into tears(though still telling me i had to do it) when i'd start to cry and scream at her about not wanting to deal with the diabetes anymore(i blame the hormones of teenage years..as i hate crying haha). in the end, i did the shot and ate. for me, looking back now..at the time i hated it when she did that, but im pretty damn thankful she was willing to fight with me until i gave in and did a shot. it didn't really effect our relationship though for very long, and i'd be over it a few hours later.

3

i agree with batts. rebellion is something that will probably occur again and again. for me, i was pretty okay with diabetes until i hit college. i stopped doing blood tests and took insulin as i felt i might need it. somehow, my a1c was never too out of control (highest was 9)--which still isn't good. after a few years (yes, years) i figured out now matter how much i rebel, i will still have diabetes.

i saw counselors and even went to a treatment center. if he's willing to go, i would also suggest a counselor. group and individual therapy is a good idea, as batts suggested, because it gives him an opportunity to vent on his own and then also tell you his own feelings. letting him be independent about his care is important because, ultimately, no one can take of him but himself. but it's also important for you and your family to be there for him and support him as he need it--which it sounds like you are already doing. i admire that! it sounds like you are doing an amazing job already.

sometimes, he just might need a few days to say "this sucks, i'm not doing it." while it can be dangerous for his blood sugars, it can help him mentally. on days i refused to acknowledge i had diabetes, my parents would do my blood testing for me--which i always supplied them with a middle finger to test it on :o) they even got up during the night to check my blood sugars.

mostly, he just needs support. let him act like a normal child--go over to friends houses, eat a cookie. he will soon realize how important it is for him to care for himself. you can always call his friends' parents and tell them to keep a little juice and snacks around. my parents always did that and never told me. they also (without my knowledge) kept old blood sugar kits at family's houses so if there was an emergency, there was a kit nearby. most of the time, i always had supplies with me, but sometimes a sneaky parent came in handy :o)

4

Have you looked into sending him to a diabetes camp in your area?  it may be too late at this point, since the summer is winding down.  But it may be worth looking into.  Another idea would be to find him some other kids that live close to you...if he had some peers who were going through the same thing then maybe he wouldn't feel so alone and abnormal.

5

I totally agree with Kristen on the summer camp thing.  May be too late for this year.  Look into it though.  Camp Sweeney in Gainesville Texas also had a Winter camp over the Christmas holidays.  Not sure how many of them do that.  I also agree with Batts that counselling might be needed.

Things were a little easier for me and my son since I had it too we would both do our thing at the same time.  But still when he first got it at 5 he pitched a fit.  I took more of the approach of batts' mother.  It was non-negotiable.

If he learns that he can negotiate or cry or whatever to get out of it, it will only continue and get worse.  It will be hard at first (but isn't a lot of things in parenting?) but be firm, hold your ground.  It's for his own good.  He may not like it now, but one day he'll thank you. I believe you are just making things harder by not trying to be an ogre.  Sometime an ogre is needed!  You're the parent/grown-up and parents/grown-ups take care of kids because kids don't know what's best for them.  They think they do, but they don't.

Best of luck and be strong!

 

6

Quick update (gosh, you guys are fast, and I love you all for it!):  I offered up pizza for dinner, and William tested, dosed and ate without so much as hiccup.  One meal down, several thousand to go...

By the time I was in my "beyond basics" T1 class on 7/1, all three sessions of our local T1 camp were full.  I'm enrolling us in the family T1 camp in October, and seriously considering the Walk, also in October.  Now scouring the JDRF site for local support groups where we could meet other kids with T1 on a regular basis.  We'll see how he does tomorrow...

So tough to know when to be a hard-nosed parent, and when to honor them as an idividual with their own needs.  Ain't that parenting in a nutshell?

Trying to be strong AND compassionate...which will likely end up with me committed very soon :)  Thank goodness I have an overly developed sense of humor!

Mo

 

7

i'd call your local JDRF chapter, they might have a mentoring program set-up like they do in my town. means you'd get set up with a parent to help you and give you tips..and he'd get set up with someone close to his age whose dealing with the same stuff.

8

my daughter is only five and she has gone through the same thing but when we found a girl down he street from where we live that had been diagnosed about three months before my daghter we set up a play date and they had lunch they checked there blood sugar together they ate together and even did there shots together ever since the two have been attached at the hip and when they are feeling down or have a problem they talk to each other and they have a relationship like no other and it is hard as a parent to feel like you dont know what to do because unfortunatly we dont have the ability to have this same type of relationship with our child unless we have diabetes aswell and so it gives you a sence of helplessness and with a friend who has the same illness they get to share the same feelings. her friend is actually 13 and like i said my daughter is only five but they are best friends no matter the age. also they both are going to diabetes camp next year and the one they are going to parents go with and you are considered weird if you dont have diabetes it is wonderful well hope this helps and remember your not alone

9

First of all if he doesn't want to eat because he doesn't want a shot you could try and get him to eat foods with near to no carbs, that's what I used to eat for snacks all the time. Like lots of veggies, meat, cheese, you could make like a sandwich without the bread that way he can at least still eat and you don't have to worry about him sneaking food and going high.

As far as the rebellion goes, it varies for everyone, but personally I was a young teen when I was diagnosed and the more my mom tried to be involved the less I wanted her to be (so you may have to watch out for that in the upcoming years). I would say try and give him options like the no carb foods, so he feels like he has a little more control. It's hard becuase all kids "just want to be normal", but it is very important that he take care of his diabetes. I know most pediatric endo offices have a counselor on staff if you and/or your son wants to talk to them it could help. For the first couple years after I was diagnosed I went to a support group with other kids/teens where we could talk about experiences and it was very helpful to have someone to relate to. they also had a meeting for parents at the same time, which my mom liked going to, so you might want to see if your local JDRF chapter has a group you could join.

10

I have no answers. We are starting our second post diagnosis week and my daughter is 12. Does your hospital have a social worker that works with your Endo? I would start there. The Doctors would have more experience and know what is available in your local area. I wish I could give you a hug. I know the first day home my daughter was laying on the floor of her room crying. I asked her what was wrong and she said "mommy can we just make it go away?" It breaks your heart.

Good luck and God speed to you.

Tina

11

Mo,

Hopefully this was a quick glitch, although as others said, the rebellion will probably come and go over the years... Sometimes giving kids a choice (but both options that you like!!) can help b/c then they feel they have a little more power. (i.e., "You can either inject and eat now or in one hour" or "Either you can test yourself or I'll do it." or "Either your can test MY BS first or YOURS first"...)

When I skip a meal, I go low in an hour anyways and have to test. Your son's on shots like I am so he may have this problem too? Probably less of a problem on the pump!

12

Thank you to everyone who responded.  I feel like he's doing okay the past couple of days.  He's eating when he's hungry enough to eat, and he's taking his insulin with those meals.  And he's letting me test regularly.  Letting him skip breakfast seems to make it better for the rest of the day (he's NOT a morning person!), and he's not having lows.  I am trying to give him as much choice as possible, as often as possible, so he feels more in control.  Unfortunately, our less-than regularly scheduled eating is making it more difficult to spot trends right now, but I think this is a temporary thing and we'll be able to settle back into a comfortable routine soon.  I feel like I'm balancing his emotional needs with his medical needs, but want to be sure he's a kid first, and a kid with T1 second.

I contacted a local T1 support group, which has monthly family get-togethers. And am in contact with a family close by about getting together one-on-one.  Their son is fairly newly diagnosed, and the same age as our son.  He's on injections like our son, and will be starting pump training in September.  Hopefully our little guys will hit it off, and can provide some good support for one another.  I also registered us for the family diabetes camp in October.

So, there we are.  Overall I think we're doing okay.  He's had to work so hard the past two & half months to stiffle and overcome his fear of medical stuff, I think the daily stress of it is starting to get to him.  But, he's a trooper, and he's workin' it.

Thank you all, again, for your support.

Mo