New to tudiabetes, but not new to Diabetes

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My purpose for signing on to this website was to find other parents of diabetics who I can relate to, and them to me. Sometimes it's frustrating trying to explain things to other parents and they have no idea what you are talking about. I hope that this helps me vent some frustrations.

My Daughter is 10 years old, will be 11 in February. It has been a struggle just in the last 6 months for me to "let go" a little bit and let her do more things with out me with her. This is something I am not comfortable with doing and I feel as though no one understands. I get questions like "if she wasn't diabetic would you let her go?" Well that answer is probably I would but I don't have that option and her being diabetic does have a big impact on sleep overs, play dates, etc...It's very frustrating because she has gone over to a friends house to hang out and what not and inevitably, when she gets home her Blood Glucose is high. Then I just feel like I'm lecturing her, again. I know it's only going to get worse the older she gets and I'm trying to teach her everything she needs to know so she can take care of herself. I constantly worry though that something is going to happen and I'm not going to be there to help her......

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Hi Lori,Welcome!

I too have a 10 almost 11 year old girl dxd. Sept 2008 who is on a Ping. She also has Celiac. I have a 15 year old girl as well and a 12 year old son. How about you ? Any Sibs?

It takes a lot more time to let go. I have found that having Tess earn "away time" by being more responsable has helped us both. When she wanted to sleep over she had to be able to do a sight change on her own. She now does them. Also she has to text me her #s using mycareconnect.com so I know what's happening. If I don't get #s I will come and get her. At 2am check I have a parent do them but Tess must be woken to correct if needed and text me.Again if I don't get a text she gets picked up. I have never had to pick her up. She wants to stay.

She understands that what she eats pre bed can determine her BGs at night so she is good to eat low carb after 8pm so she doesn't get picked up. I know it sounds like punishment but I try to explain that I can't have another parent worry all night about her. She has been a little high at times but not crazy so it has been good.

We are in a sensitive time frame. As a mother of a non D teenager ,rebellion is just around the corner. I want to teach her good habits now.

I worry too. This is a tough job. I am also a Christian and in that Tu group too. I couldn't do it without my faith that God is watching over her too.

I am in a support group in my area of 85 families. It really helps us all. Tess went to D camp this year and last. That was great, living with all those kids doing the same thing and having the encouragement.

Tess would love to "friend" your daughter . If you wanted they could write here on Tu if you would like.

Friend me. Have a great day Anne Marie

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We are five years in, so have seen a lot of lows, highs but good numbers, generally. When going out by herself and when younger on playdates, since she is on a pump, it was easy to change the basals slightly so she is running twenty percent lower than her normal basal. This works well for us as she is generally more active when away from home. We also go in and manipulate the ICRs a bit so she gets less insulin for food when she is away. For sleepovers away from home, yes, we do let her run higher all night. Usually, we try to have the sleepovers at our house. In our case, she usually runs low when away. If she came back high, I would assume its the food and lower ICR just a tad. She has a cellphone and we keep in touch every couple of hours. She always has large, individually wrapped Lifesavers in her jean pockets, in glucometer case, in purse; we check that she has sources of sugar available even without carrying purse (jean pockets). It is natural to worry, takes a while to get comfortable and you can never really just forget about it, just keep in touch via phone. Adjustments can be made over the phone just as easy as if she were at home. As long as you keep in touch, it will work out.

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I too toke diabetes at 10 I hear what your saying about sleep overs. My mom always had a problem with me and those but at the time I took Type 1 we had urine tests where when I came home I was 4+. Fast forward 26 years, my daughter became a Type 1 at 11. It was the hardest thing for me to do, let her go ANYWHERE. I had one thing (I thought on my side) her little sister who (I thought) would tell me when she done (or ate) something wrong. But she didn't and my daughter seemed to do well. She's now 22 years old and a CNA. Mother to my 3 g-kids. JUst let her go a little at a time and you will get sooooo much back when you do. Now we (as parents) have those teen years (ugh hated the early part of them then she got her licence WHOLE other story there) but I had a "normal" daughter too and she was as bigger pain as her big sis. HOLD ON STRONG MOM!!!! YOU CAN DO THIS!!!

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Speaking from a 16 (17 in a few days) year old diabetics point of view, Id like to thank you for posting this. Seriously. Not sarcasm. Now I FINALLY know where my mom is coming from!!! Lol, believe it or not, it's frustrating on our end, too.

My mom is very much the same way. I'm not allowed to do quite as much as my brother did when he was my age. I'm sure it wouldn't be this way if I wasn't diabetic. Not gonna lie, it is very annoying to us to know that. It feels like our own parents are discriminating against us because we're the diseased ones and not our siblings (for those of us that have siblings).

You probably shouldn't give us too much slack though, or we may get careless. But at the same time, you can't suffocate us with rules. There once was a time (when I was 14? maybe 15?) when my parents wanted me to tell them what my sugar was every single time I checked it. To me, that was ridiculous. I knew how to treat the highs and lows, and I did so without their help. So why tell them? Its not like they could have fixed it. I felt like my parents didn't trust me to fix a blood sugar of like 70.

The new rule is tell them when its an extreme high (above 300) or an extreme low (below 50). Which I see as much better, because then if something does happen and I can't fix my sugar on my own, they'll be prepared.

As far as sleepovers go...When I was your daughters age, I was homeschooled, and I had just moved to the area I'm in now. So I didn't have friends to go spend the night with, but I did have cousins. When I went to spend the night with them, I'd check my sugar and if it was ok, I didn't say anything. If it was high or low, Id tell my cousin, who would tell my aunt, who would call my mom. My mom would tell me what to do over the phone until I was old enough to take care of it myself. Like I said, I still have the rule of telling mom or dad when I have extreme highs or lows, and that still applies at friends houses. I have to call or text.

Also, my friends have taken interest in learning what to do in case I pass out from a blood sugar low. So when I have a glucagon shot that expires, I use it to train them. It makes my parents feel better.

Guess what I'm sayin is don't hold on so tight you suffocate her, but she still needs rules just like any other kid. Am I making any sense here?

b

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WOW! Thank you EVERYONE for sharing with me. I wasn't expecting this much response or feedback and I have to say that ALL of it is helpful in some way. Anne Marie - Yes, I have a son that is 7 years old and a step daughter that is 16. As far as sleepovers go, the last time she went to a friends house to sleep over she dropped down to 29 and it REALLY scared me and the other mom, soooo, after that we decided for now, sleepovers at our house only. I have let her go hang out with friends for a few hours at a time and even packed food for her to take so she knows(and myself) exactly what she's eating.

Leah- She is getting there as far as responsibility goes and I am too, as far as seeing just how responsible she is and trusting that. She is an awesome girl! :)

Doris - Thank you for your response, yours and everyone else has helped me more than I can say, I really wish I had found this site 2 1/2 years ago when she was first diagnosed.

Brandi- You really gave me a totally different view of things and thank you very much for that. I am trying very hard not to smother her and yes I am afraid of that too. I don't want her to end up resenting me when she's your age cuz i'm constantly on her about her Blood sugar and what not.

Thank you everyone again for your insight. I am so thankful to have found this site, and to be able to relate to other people who know what it's like. :)

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Yeah! It is tough being a mother! I think you would find it hard to let her be a bit more independent if she were not diabetic. It is natural. A mother's instinct is to hold on to her babies. Hey, I am diabetic, 49 next month and STILL my mother is telling me to do this and to do that ..... But I wonder. Would she not be better to go on these sleepovers etc, learn by her mistakes about the consequences and not do them again!? I do not know how ill your daughter is obviously, and I was only diagnosed in 2004 having suffered all the symptoms for at least 10 years previously. I think it was my mistakes and my not accepting full responsibility for my diabetes that led me to some near death experiences and finally made me wake up and take note, to eat more regularly, to stop drinking, to test more regularly and take my medication when necessary, however much of a bind. I have a feeling that too strict parental control might lead to her resenting her diabetes and rebelling in her teenage years.

Keep a check on what she is doing by all means but try not to restrict her too much! There are several diabetic Olympians. There is nothing she cannot do - it is just a condition that needs careful monitoring by the patient themselves and adjustments made accordingly. And often I have found, I have been very good and not done anything wrong with regards to eating but still my sugar goes through the roof! It is a bit of a fickle illness. Often the highs in my case are due to an infection somewhere. So I deal with it.

For the times your daughter is away from home, be it with her friends or at school just pack her a sandwich and a glucose snack for when necessary and a drink. She will be fine! In fact I have a feeling children are better at dealing with these things than we adults! I wish you well.

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Lori you are not alone in this matter. I have a son dx a few years ago and myself are T1's. I was a late onset so in the beginning I never understood the mechanics of diabetes until I also had to deal with the care and management of this disease. I found it extremely difficult to let go and have my son be in control of his care. As a parent you want to make sure you provide the best for your child. Caring and the worrying\stress put years on me as I tried to deal with the highs and the lows, for me it wasn't until I actively involved my son in his diabetes care. We made a transition where when we were home he managed his care (with my involvment). After time and training he was completely independent of my care (except for the occasional troubleshooting). It wasn't until he mentioned to me in school of a younger kid that was a diabetic, in the nurses station, and having control problem at school, he mentioned how he has been helping this younger kid (my son is in high school) with troubleshooting the highs and lows and even how to give proper injections. It was then I realized that he could handle this and I could pull back and let him be the man he was becoming. I say this because once he took control of his management life became easier and also his A1C improved. With a younger child it is important for them to become a managing partner. This diabetic that my son assisted had been a diabetic for years and he didn't know what to do because his parents did all his management for him. His parent wasn't with him during the day and he would have 300's and even 400's... or even lows.

With this all said both my son and I are pumping and we use the Omnipod. My son has complete control over his care but I still keep on eye on his data as I download and review his data. I look for trends to see if we need to adjust basal or bolus amounts. I sit down with him and go over the data so that when he goes off to college he will be able to make decisions for himself. It is hard to let them go... but I have been so pleased at how my son has accepted and dealt with diabetes. I think you will be amazed at how capable you daughter is at managing her condition with the empowerment and the knowledge that goes into the care.

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oh... I also failed to mention that I am a Software Engineer and am working on a device that will automatically download my data from my pump, transmit this data using a 3g or wifi connection to a centralized location, and then provide an iPad or iPhone app that will allow us diabetics to monitor our data and look for trends. This device will also be good for parents who's children go off to college and need monitoring or children who are away from the caregivers and need to be monitored more closely. Downloaded data combined with CGMS can give a better idea of any upcoming low episodes. My thoughts are if you use the tools at home to determine care why not make it wireless and perform the same type of care but not with them close by.

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Leah - I totally understand! I would be the same, if having been away from me for that long. When Chloe has been away from me for about 3 hours I start to worry, I text or call her to see how she is doing and that helps, but it isn't until she comes home that my mind is completely at ease. Chloe has also, just very recently, sneaking candy out of the candy jar at my mom's house. It's not like she never gets sweets, because she does, but she knows the importance of counting the carbs and what happens when she doesn't.

Mitchell - thank you for your insight, Chloe does know how to do some thing on her own and I really try to let her do them. Middle School is next year and I'm really trying to prepare her for that because she really needs to learn to rely on herself more than she does me. She knows how to change her own set and knows what to do with highs and lows but she still checks in with me for reassurance.

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Hey Danny I just had better say it that way than I was "diagnosed" LOL! I don't want to ever think of this as being a bad thing to have, just another learning experince. I say diagnosed and (to me) it sounds like I'm sick. I know just a hang-up with me! LOL!

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I'm sure your daughter wont resent you when she's my age. Eventually, she'll learn to see that all the rules are because you love her. :)

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Lori:

Welcome to our little corner of the internet, we are glad you are here and hope you find our community welcoming and perhaps even a little fun sometimes.

The question I think you raise is a little about having children and diabetes. I am not an expert in any way, I was 17 when I was diagnosed, and i grew up with the disease. I can tell you however, the best words I was was given about being diabetic. I had a habit when diagnosed of ignoring my disease as much as possible. i did that for several years and my mother was of course very upset (she had already had diabetes for 15 years at the time). Well my mom was upset with me to the point that hse went to the doctor for advice.

With me present, the doctor, said, "when Rick gets tired of being sick and tired he will pay attention to his disease". It put the problem squarely where it needed to be on me. Now I ma not saying a 10 year old should get all that responsibility, but it is something to remember as she gets older. Eventually, every kid I knew with the disease, got tired of being sick and tired, when we did we took care of ourselves. Yes, one is gone now, he had otehr issues, but otherwise, we all made it and are doing well.

So remember, getting tired of being sick and tired, is the antidote for mis-management. I for myself still remember that ever time I thin I want this or do that or not test this or not test later. I have to ask myself, am i willing to be sick and tired, because i am sick of this disease? Well sometimes, yes it is, most time, not so much. Incidentally, if my children had diabetes and were old enough, they would read breakthrough, the Elizabeth Hughes story. One one sees, how bad things were, our modern day trials are pretty small in comparison.

good luck,

Rick Phillips

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My daughter was diagnosed with a malignant brain tumor when she was 14 years old. So different disease but still close monitoring for meds, seizures, learning problems, etc. When your child has a chronic or acute disorder you are going to worry and do close monitoring. I always made sure when she went to somebody elses house that they knew what to do if she had any problems. I would do some parent and friend teaching before she went on an overnight.