Help me help her!!

November 12, 2009 2:59 PM

How can I best encourage and support my wonderful little niece who was just diagnosed with Type 1 Diabetes?

This amazing little six year old girl was just diagnosed a few months ago. It rocked our entire family, but especially her parents, as the scrambled to understand how this would change all of their lives. A few months later, now, and she's been "a trooper," brave about getting her insulin shots (about 4 a day) and the frequent blood testing.

But she's getting tired of being brave. She's only six, after all.

We live across the country. We'll be there for Christmas, but we've been wanting to *do* something to encourage her and tell her we're proud of her and lift her spirits. I am looking for any suggestions to help us in that goal. Also, she has a little sister who is about three - we want to be sensitive to her as well in case she feels like she's left out. Thanks so much!

posted by Spyder's Game to health & fitness (16 comments total)

I would highly recommend checking to see if her insurance would cover an insulin pump. I've worn one for six years, and it is much easier than taking shots. It also usually gives people better control over their blood sugar levels.

Essentially, instead of taking several shots everyday, you insert a catheter (actually a "cannula") once every three or four days, and a small pump gives you a measured amount of insulin constantly. It has a couple of small downsides: 1. You have to wear the pump all the time. It's about the size of a beeper. There are lots of carrying options, though. And 2., it's potentially more dangerous than shots because you are receiving insulin all the time. You can't forget to eat or your blood sugar may go low enough to pass out. Her parents and endocrinologist can teach her the ins and outs.

I've been diabetic about 15 years now. It's a major hassle, but manageable with good habits. If you have any questions, please memail me. Best of luck to you and your neice.
posted by Benny Andajetz at 3:44 PM on November 12

I'm not sure if you're asking for some sort of diabetes "reward" activity. I'd advise against relating the encouragement to the disease. Just go have a fun time that normal 6 year olds would enjoy, e.g. an amusement park, day at the beach, petting zoo, whatever they are interested in that is not centered around eating. The best days living with a serious disability are when you're allowed to forget the disability and just live life like anyone else. If you do an activity like this the sibling won't feel left out since it's not a "Diabetes Parade".

The parents probably won't have the hang of carb counting and balancing insulin yet, so they might stick to a moderately low-carb diet. Poll them beforehand for food choices and restaurants. Once they get used to it they should be able to go almost anywhere.

As Benny said, pumps are a good idea for kids since they can deliver small doses more accurately. However, most docs won't progress onto pumps until the parents can carb count and dose insulin comfortably, and the beta cells are completely dead (takes a few months) - otherwise the last vestiges of insulin secretion can really screw up BG control. Once the beta cells are completely gone, insulin doses can be calibrated much more accurately.
posted by benzenedream at 3:53 PM on November 12

Benny Andajetz, thanks! I just talked to my brother today and found out that they are looking into getting a pump. The doctor has asked them to wait for 4 months (I'm unclear on why) and insurance has asked for a 6 month wait. But they are definitely looking in that direction.
posted by Spyder's Game at 3:53 PM on November 12

I'd put some extra effort into finding non-candy treats for her, especially at Christmas. Exotic nuts in fun packages, maybe, or cute little cheeses, or look into how to make those cool carrot butterflies one sees at Thai restaurants.

You could maybe try sugarless candy, but, yuck as far as I'm concerned. You might want to look into potential health effects of artificial sweeteners before giving that to her. It's probably a good idea to try to cultivate good veggie-loving tastes in her now, anyway.
posted by amtho at 3:57 PM on November 12

Hey benzenedream - no, I'm not looking for some kind of "reward" activity for her. What I'm really looking for are ways to encourage her and brighten her day. We've been planning on writing her a card with messages like "We're so proud of you for being brave!" and pictures of her cousins in it. I was hoping to gather some *other* ideas of how we, from the other side of the country (so taking her out on a fun outing is off the table until Christmas) can make her feel a little better. We'll be there for Christmas, but I would love suggestions of things to do in the meantime that are a creative way to say "we love you, we're proud of you, you're doing a great job!"
posted by Spyder's Game at 4:01 PM on November 12

As a parent of a type 1 diabetic, I would recommend against doing anything like what Benny Andajetz mentioned. Seems a bit intrusive and could possibly have the unwanted effect of overwhelming the child and/or parents. My daughter gets stressed when people try to push the pump on her (although I'm sure it's meant to be helpful) because getting used to her shots and the routine of that was difficult and she prefers as few changes as possible. And her A1C's are awesome. One thing that can be difficult about being diabetic (or having any kind of chronic medical condition) is being constantly inundated with unsolicited advice about diet and treatment.

My daughter was diagnosed right before her 13th birthday, so my experience is with a teen and not a small child, but basically what helped her feel better about coping with it all was to try to keep things as normal as possible. Yes, do give lots of praise and encouragement and support, but try not to get so focused on her Dx that it's all anyone talks about. It is a tedious disease that she will often be tired of thinking about and focusing on. Yes, a lot of her life has changed tremendously, but do try to emphasize what hasn'tchanged as well. That said...how about getting her a gift of a nice medical id bracelet? I unfortunately don't have time to hunt down links for you, but if you google id bracelets, there are lots of companies that make really cute/pretty bracelets for kids. I'm sure that would be much appreciated.
posted by weesha at 4:06 PM on November 12 [2 favorites has favorites]

Oops forgot to put in the close tag...sorry about the unnecessary italicization!
posted by weesha at 4:08 PM on November 12

I'm so sorry for your niece and her parents. It's a nasty, troublesome illness, and it must be so hard for a child to even understand, let alone deal with.

I think the best gifts might be experiences that haven't been compromised by her diagnosis. Some ideas: a packet of movie ticket vouchers for the whole family, so they can see a couple of those pre-holiday releases; depending on where they live, a couple of horseback-riding lessons; some modeling clay, beading supplies, or embroidery floss, whatever the kids are into these days. Something where she's distracted and having fun, and getting a little chance to think about something else for a while.

I wonder if there are ways to get her in touch with other children her age with juvenile diabetes; I'd imagine it would help to know she's not alone, just as it is for us adults.

Finally, long-term, if you and/or your wife have any athletic ambitions, you might think about doing a bike ride or run for the Juvenile Diabetes Research Foundation. My husband is doing his fifth 100-mile bike ride next week, in fact, as someone with Type I himself, and it's a great way to do something productive for your niece. She might even want to travel down to see you finish!
posted by palliser at 4:13 PM on November 12 [2 favorites has favorites]

I think palliser discovered the essence of the ideal gift: "I think the best gifts might be experiences that haven't been compromised by her diagnosis." I think you may be after something that reinforces the fact that if she learns to deal with her condition then she can live a happy, normal life like any other six year old girl. So perhaps, as palliser said, movie tickets? How about tickets for her and her friends, including her sister?
posted by jhighmore at 5:06 PM on November 12

One of my best childhood friends was diabetic and she loved going to Juvenile Diabetes Foundation's summer camp every summer. It was a place where her condition was normal and she could do things she might not otherwise get to do knowing she was safe. I think those camps are free, but if you could do the research for her and bring her a brochure about it, it might be a cool thing for her to look forward to.
posted by hydropsyche at 6:28 PM on November 12

As an aside, when I was a kid and adults praised me for being "brave" and started looking very serious and misty eyed as they contemplated the tragedy of a such a horrible fate for a child, it didn't make me feel better. It made me feel weird, even more different, and like I was the cause of other people's misery. Looking back, I completely understand where the sympathy was coming from - my life expectancy was about 30 at the time. But as a child I didn't understand the whole weight of the disease, I just that I got sick and then had special rules to follow. I wasn't miserable and obsessing over diabetes, it was just something that I had to do.

Palliser nailed it with the gift of experience. Please don't do food as a gift. Steam comes out of my ears when people give me "sugarless" candy, and many of the things you think are low carb are not (sugar free candies are usually loaded with maltitol, which does raise blood sugar, only more slowly than glucose). Medic alert bracelets are a good idea in general but not a good gift - too utilitarian. I like to get sciencey gifts, but it depends on what the kid enjoys to do.

Diabetes camps are a great idea, even though they are somewhat disease-focused. They are usually in the summer though.
posted by benzenedream at 7:08 PM on November 12 [2 favorites has favorites]

The Babysitters Club has a main character with Type 1 Diabetes (Stacey) plus I started reading them around her age.
posted by melodykramer at 7:24 PM on November 12

My daughter was diagnosed with Type I diabetes when she was 4 years old. She's now 21. I think your heart is in the right place and you sound like a wonderful person, but I know that my daughter got very tired of all of her relatives and friends constantly telling her how brave she was, and constantly making reference to the disease.

After the initial shock wears off and the family settles into a care routine, it's really not necessary to make a big deal of it. Just be a loving and supportive family member in the same way you would be if she didn't have diabetes. Tell her she's a great kid, she's smart, she's creative, she's [insert a personalized positive attribute here]. Of course you should also mention that you're very proud of how well she's handling her diabetes, but try not to make it THE focus of your attention.

Best wishes to you, and to your niece.
posted by amyms at 8:52 PM on November 12 [1 favorite has favorites]

This might be kind of old fashioned, but what about finding her a pen-pal with diabetes? It may give her someone she can talk to through mail. I'm sure mom or dad could help her write it. Kind of give her a different focus ( writing letters) other than the diabetes itself. Maybe the other person could be about the same age or maybe a bit older and she might start to look up to them. Emulate them. In my opinion I'd try to get her to write the letters by hand ( again with help) and not send emails. The reason being that she would have to wait for a reply (hopefully not too long) and that would give her mind something to think about rather than shots and stuff. Exchange pictures and birthday cards, etc. Kind of keep her mind occupied. Thats just my opinion though. I think her sending emails might be too spontaneous. Too instant. If she found another girl a bit older that could encourage her, it might be a good thing. Or maybe help her write a letter to a person, or persons, she likes( child TV/movie star, etc.) Hopefully they'll write back.

FWIW I feel proud of her also.
posted by Taurid at 10:34 PM on November 12

My ex-wife was type 1 diabetic, and I have another friend who is as well. My best advice is to treat her as the basically completely normal kid that she is. Also, the adults in her life have to learn how not to freak out when things go wrong (and they will go wrong at times). My ex's mom, to hear my ex tell it, lost her shit when her little girl's blood sugar got too high (OMG, long-term health consequences!!! AAAIIIIIGHHH!), and lost her shit again when her little girl's blood sugar got too low (OMG, you're not making any sense when you talk! Something's terribly wrong with you!!! AAAIIIIGHH!). This sort of shit made the balancing act that is diabetes management very threatening, and scarred my ex for life. Because her mom's anxiety got transmuted into blame and emotional upheaval and anger at the kid, my ex found it emotionally difficult to even check her glucose levels, even as an adult. So, cultivate calm, calm, calm. If the parents can be okay with it, the kid will be okay with it.
posted by jon1270 at 2:59 AM on November 13

I agree in the main with people who say don't make a big deal about it. But as someone who has been diagnosed with some chronic health problems (as an adult, not diabetes) the first thing that popped into my mind was that the best thing to give might be a sense of control. And from there, I go to cooking.

So, I found this list. In the spirit of control, I would look for a cookbook that a six year old could cook from and in the spirit of not making a huge deal about diabetes per se, I would look for one that doesn't have "Diabetes" splashed all over the cover. This one looks pretty good (there's a version for Canadians if you are in Canada, but I assumed American: both links are in the list I linked, towards the bottom).

If I were to give it, I would make sure her parents were cool with her cooking from it first. I would give it probably with some other stuff that was straight-up kid oriented; some toy or game that had nothing to do with her condition. And I would inscribe it or put a letter with it or something that emphasized that I started cooking with my mom when I was six, and that I really loved being able to make meals (especially deserts) for my family and that's why I'm giving it to her.
posted by carmen at 8:48 AM on November 13