New to Diabetes

My 10 year old daughter was diagnosed on May 28, 2009. At the time we brought her to the doctor, she had lost 7 pounds, (nearly 10% of her total body weight). Her A1C was at 10.1 and her bg was 407. We spend 5 very long hours at the Endocrinologists office with testing and learning an overwhelming amount of information. She is currenly in that phase referred to as “the Honeymoon Phase”. She’s partial to the flex pens. She takes 3 units of Levemir and bedtime, and anywhere from 1 - 4 units of Novolog before meals. She is an EXTREMELY active kid. She’s a dancer, and she dances anywhere from 3 to 5 hours a day 5 - 6 days a week. So she has to test a little more frequently, and this is where it gets tricky. She doesn’t like to stop what she’s doing to test, especially if it’s dance.
I know that her BG bounces all over the place, often seemingly for no rhyme or reason… which is very frustrating and scary for both of us.
I worry about when she goes back to school, and starts 5th grade… will she feel “different” and will that make her feel bad? She seems to have assimilated the diabetes into her life with very little outward effect. I worry constantly, but don’t want to make any big changes to impact her life so we go on with life (playdates, camp, sleepovers etc) the same as before her diagnosis. We bought her an iphone so she had applications to aid her in managing. She uses Calorie King to estimate her carb intake. When she is not with me, she has to test her BG, text me her numbers, tell me what she plans to eat and then she has to estimate what her dosage should be… which she has learned to do quite well. She has been very open with her friends about her condition, asking them to hold her BG meter while she pokes her finger, or pinch her skin while she gives herself a shot. Her friends have been AMAZING. Helping her when she asks for help, giving her space when she needs it, and being there for her when she needs them. All of them are learning about counting carbohydrates, and being considerate not too “over-indulge” in front of her.
I have no idea what to expect next. Nobody in our family has diabetes. I am trying to be strong for her and not show her how frightening I find this. When I see all the little holes in her fingers, I want to cry. Sometimes when I give her a shot, it hurts or bruises her and I feel so helpless… I would rather poke my own fingers or give myself a shot than do that to her… and it breaks my heart… but I try to stay positive and remember that we are very fortunate and that we can and will manage this disease… I am so very proud of her for her strength and her courage. I find it remarkable…

Wow… your little girl is so strong! It always helps when your friends and close ones around you are accepting of it and are willing to help when help is needed. I’m glad that she has that support.
I can’t really tell you how it is growing up with diabetes. I was just diagnosed in January, at the age of 19. There are many people on here though that have been living with this from a young age and I’m sure they would be willing to tell them their experiences.
Be sure that she tests often while dancing. The physical activity can drop her bg.
She sounds like a wonderful kid and like she is really handling this well.
I wish her the best =]

Hi melissa! I just wanted to offer you what little I can, but I too dance, mostly classical ballet, but I’m learning from experience, just diagnosed in June that contrary to what us dancers are taught she needs to make sure she’s consuming enough complex carbs. It requires tons of energy and stamina to dance and I’ve only been dealing with this for over a month but I started bottoming out within two hours of dancing, I dance for my university. Lots of proteins and snacking in between classes helps alot! I have danced with plenty of girls and guys that had diabetes and that’s what they did and now I do! One other thing, there is an app on the iPhone that is a diabetes log and it’s what I use to input my insulin and bs and carbs. Plus there’s a section for notes if she wants to include daily activites or track foods. And the best part is it’s a free app.

Have a great night!

Elizabeth

thank you so much. I’ve been trying to connect with other dancers, without much success until now! She dances with a small company and they compete about once a month. We just got back from our National convention and competition in Las Vegas. She was in classes, rehearsals and competions pretty much all day long for seven days… It was pretty crazy with trying to test, give her shots and get enough food into her on such a rigorous schedule, but we managed and she did really well. thanks again, sometimes this stuff is a bit overwhelming and it helps to hear how others are managing…

here is a group you may be interested in:
http://tudiabetes.com/group/diabeticdancers

im sure you can fnd others to talk to there

Fanctastic… THANK YOU!!!

you’re are very welcome =] I hope you can find what you’re looking for! good luck to you

Melissa,
I was 10 when I was diagnosed; it has been 16 years. I was not a dancer until high school, and it is a challenge. But coaches and instructors understand. Just make sure she has what she needs to treat lows. I carried soda. I totally understand how she feels about not wanting to stop… I still feel that now. The problem will be sometimes she might be high because of a work out and sometimes low, but because she is working out she may not feel it like normal and not recognize the signs. Checking will be vital. I would warn of performances. Stress effects levels as well.

Sounds like you have a great plan for back to school. I am a teacher and I got trained in diabetes because we had a diabetic student. I cant promise, but I am guessing her teacher will have the possibility of training as well. But when I was in 5th grade my teacher had things to treat my low, my friends recognized lows, and I was best friends with the nurse! Out of elementary school, support waned a bit, but everyone knew.

Yes, I felt different. Yes, it made me feel bad. But not everyday. It sounds like you have an awesome girl on your hands. She will learn to take care of herself. Honestly, younger years, honeymoon phase was not so bad. I remember a fight in high school when I threw away my meter during a fight with my mom. I was tired of being different and I blamed her. She made me take care of myself… so a lot of animosity was aimed at her. I am not trying to scare you, all I am saying is that while I was young… not as hormonal, it wasnt so bad. It was during puberty that I really got upset about being different. I was so sick all the time, I actually was frustrated with missing school so much.

As an adult, I can say, I wish I had a friend with diabetes as a child. Let her go to camp or events, make some friends. This website has given me so much hope just knowing other people understand.

Just know, you will have good days and bad. Dont be scared. You do hear of all the horrors that may happen, but that can beat you down. She is a happy healthy girl and you CAN manage this. No one is perfect and diabetes makes that even harder!

You will be fine and she will live a great life!

WOW, thanks so much. you are so honest and pure… and I really appreciate that. When you say you were sick all the time, was that from the diabetes? from being too low or too high? that’s the part I am trying to prepare for… I have heard that a pump really is helpful during the crazy hormone fluctuations that happen with puberty… what were you using, and what do you use now? She’s very hesitant about the pump because of the dancing… but she’s considering it for when she goes back to school…

childrenwithdiabetes.com I would recommend this site to you. It sounds like you guys are handling the diabetes well. My parents found this website and we have learned lots of good information. If she is interested in meeting other diabetics I would definitely recommend going to a conference, especially the big one in florida every July!

Way to keep pushing on! You gotta make things very similar to how it was before diabetes. Feeling different just sucks…I was diagnosed at 13 and it hit me everytime that I was different then everyone else. But it sounds like you guys are doing the best you can! Keep up the good work!

I know that I felt “different” when I was in school. I was diagnosed at 14 and was also the first and only diabetic in my entire bloodline. But, I didn’t have the remarkable friends that your daughter seems to have- and this leads me to believe that she will be fine about it.

You have a right to worry, as a mom, and as diabetes is a very scary and stressful disease, but it sounds like your daughter is going to pull through this very well. She seems to adapt and her ability to dance is very good for her. Keeping her active is important, and letting her believe that life can go on as “normal” is imperitive.

You sound like a very caring and good mother. Take a moment and pat yourself on the back for that.

Having a child with diabetes means that you, too, have it- by association. Learn as much as you can, and avoid telling her about the “negatives” until she can better understand them.

You sound like you’re doing fine.

I’ve lived with it for 11 years now, and I consider it just “a part of who I am”. There’ve been some really tough times, but I got through them and I’m okay now.

Keep going. You sound like you’re doing fantastic!

Yeah, I agree that I hated being “different” in school- high school. I was also sick a lot because blood sugars fluxuate so often and sometimes for no apparent reason- so there seemed to be a lot of mood swings (moreso than the normal Puberty ones). I was tired a lot. I slept a lot (sometimes even during classes). But, I tried to keep my extracurricular activites up- even though some days I was too tired to do them. I pushed myself a lot during high school, to keep up with the healthy kids.

I also wish that I had a friend that I could talk to about diabetes. It is a very lonely disease because no one (except those who have it) knows how complicated and stressful it is- 24 hours a day. There are no breaks and no vacations from this. But, media and doctors make it sound like it’s no big deal. But, it’s really hard!

So, yes- if you can find a diabetes camp that she could go to, to meet brave girls like herself, that’d be fantastic. I wish I had gone when I was younger. I’ve only been on TuDiabetes for about three/four months now, and it has drastically changed my outlook- knowing that I’m not alone in this.

I was diagnosed at age 8, in February, so I got a week off from school while I was in a coma at the hospital (I honestly thought that was awesome; all the kids at school were SO jealous that I got to miss a week). Really, though, I never thought it was a big deal; I just thought of it as something I had, like red hair and freckles. (When I got older (18 or 20 or so), I started to get really angry about it, but, at least, by then, I was more of an adult and better able to handle anger and things.)

I don’t want to add more pressure, but my biggest piece of advice to a parent of a young kid with diabetes is to not make a big deal out of it. It sounds like you’re doing this, so good for you. But I think the best thing parents can do is to not get upset (or to get upset away from the kid). Diabetes can be stressful enough for a kid without knowing your parents are worried too. I always encourage independence in diabetic kids (but I know some parents disagree on this). Unfortunately, I don’t remember all that much about my diagnosis, but I don’t remember it being anything big.

I’m not sure my diabetes was well-handled when I was 10-14 or so (but that’s because my endo was one of the people who discovered ultralente, and he insisted I take it, even though it very obviously did not work for me). So that’s another bit of advice: find the medicine and insulins that work for your kid. But, except for diagnosis, I was never hospitalized for high blood sugars. (Since I reached 22 (out of college) or so and went out on my own, I’ve been hospitalized a few times for lows, but I never was as a kid.)

Sorry, my sugars are a little low right now so I might not be too clear here, but, basically, emphasize to your kid about how it’s just one of those things and that it’s not a big deal. I never felt different at school. I always brought in a note to my teachers explaining diabetes and what could happen. (I remember once in 10th grade or so, I knew I was low, but was incapable of saying it, so I just left class with 50 cents and got a soda at the vending machine. As I walked out, my teacher asked me where I was going, but I just smiled. I think he could tell something was wrong, and he sent someone after me. Since I was usually a pretty good student, they just let me buy the soda and drink it till I came up and started acting normally.)

I came of age with diabetes in the 90s when meters were huge, so, in elementary and middle school, I put my meter in the nurse’s office and tested and shot up in there. But, by the time high school came around, and they got smaller, I just put it in my backpack and tested in there and gave myself shots in the cafeteria. One girl (who was always a real brat and had to make a big deal out of everything) made a big deal about it the first day (but she just said, “Ew, gross,” but knew what was going on), but, other than that, it was pretty much nothing.

Unfortunately, since it’s been so many years, I don’t remember too much about it until I reach my mid-teens. I think that’s partly because my control wasn’t great (a1c was 6 to 9, usually, with some 11s after I started on ultralente) and partly because most people don’t remember the details of what went on when they were that age. I remember a couple of bad lows (not worth hospitalization, just needing careful observation), but most of what I remember from my childhood isn’t really diabetes-related – it’s playing in my backyard or playing basketball with the other kids, things like that.

Sorry, this is now really long, so I’m going to stop.

I was sick a lot because of diabetes yes. Puberty is full of hormones so it was hard to regulate. Back during the difficult days I was on injections. Mainly I would have uncontrollable highs which would make me nauseous. I couldnt keep food down and eventually would end up in the hospital. The hospital happened twice in middle school, but I got on a medicine, reglan, to help stop the cycle of throwing up before it started.

I got on a pump in 10th grade. I was on the dance team. I could wear it during practice just fine and would then keep it in bloomers at football games in the stands. During performances I would take it off. That was hard at competitions and long half time shows. But then… the pumps were so fragile. I feel like they have come a long way! Like my first pump they warned me about “jumping around too much.” Now pumps can go swimming!

Hope this helps!