59 Responses

  1. Elaine D.
    Elaine D. May 7, 2011 at 9:09 pm | | Reply

    I just wanted to write in and give the perspective from someone who is very new to this disease. My son was diagnosed with T1 six weeks ago. He is seven years old. I have just finished reading Moira’s post and everyone elses. Even though I have been told not to read too much on the internet right now, I do and freak myself out every few days. Just when I think I am in a good place with being able to manage this disease for my son, I read something that makes me wonder. After reading all of the posts, including Moira’s, I realize that what my husband and I are doing is going to be different than other people but if it works for us and we are following the advice of our doctor I’m not going to worry so much. I basically need to use common sense and go with my gut instinct as a mom. My doctor has already told me that I don’t need to check my son every night, but my husband and I don’t feel comfortable with that. We have decided to continue to check him every night when he goes to bed, around midnight ( right before my husband goes to bed) and at 3:00 a.m. I don’t know if and when we will feel comfortable ever stopping this routine. Maybe we will at some point, but for now this works and allows us to sleep at night more soundly. We take turns so one of us gets a full night sleep every other night. Our son is in the honeymoon phase and on two shots a day right now, which doesn’t sound a whole lot different than if he were on a pump or something else. It sounds like every day is going to be different and we will just have to do the best we can in managing each day. I’m not going to stress about it all of the time, it’s too exhausting. There are still so many things I’m still very thankful for. I’m thankful that my son feels his lows, that he really enjoys foot rubs, that we still laugh a lot, swim, play soccer, play basketball, eat pizza and pasta, and have a small cup of ice cream every day. We check him 6-8 times a day unless he feels low. I don’t want diabetes to consume his life or mine, he has too many years left, God willing, to start letting it take over now. I thank Moira for sharing her experience and perspective. I think a little more like her in that I try to be as relaxed as I can about things, even diabetes. But I also agree with other people who say each of our beautiful children are different and we need to do what is best for them. Don’t worry about what other people are doing, do what is best for you and your child. It’s also very important to treat each other’s opinions with respect and realize each of us has had and will continue to have a different experience with diabetes. I recently read a post on a T1 yahoo group from someone who had taken their T1 child to Africa for two weeks where they had no access to refrigeration. I was delighted to read that. Life goes on, let’s all live every day to to the fullest…enjoy and embrace every moment :)

  2. MoirasKid
    MoirasKid May 8, 2011 at 6:18 am | | Reply

    I’m Moira’s daughter. She will not like that I’m saying something here but I am. I think the people who are so mad are missing what mom is saying. I want you to know that she’s a really great mom. She made me check my blood tons of times for years and years and years and you know what happened? Well she wrote about it on this blog another time so I guess you do. We get really tired of it all and while it might not make sense to you moms or dads with younger kids, we actually get to a point in our lives where you cannot control us and then in a lot of cases (like . . almost ALL my friend with diabetes) we go as far the other way as we can. I have friends with eating disorders. I have friends who have died. I’m doing well now but it really is like mom said “All about balance.” I like to say i was the ‘model patient” and I KNOW my mom checked me all the time and I fell apart so I’m pretty sure most teens can have that happen.

    Also, I think my mom was just using her usual “hyperbole” when she said child abuse. (but if I was a teenager and she tried to check me 15 times a day I would probably talk to my CDE about something being wrong . . . just saying!)

    In any regard I just want to say to the people who attacked her here. Even if she didn’t say it right or even if you don’t agree, she’s a really great mother who has helped thousands and thousands of parents of kids with diabetes and who has been a leader in getting federal funding for research for ALL people with diabetes — whether they check every two hours or not. I’m pretty sure I almost killed HER with my rough years but she never gave up. I am doing well in college and hope to be a happy adult who lives a long, long life. That will be thanks to my Mom. She might be outspoken sometimes and you might not agree with her. But you have no right to assume she’s a horrible human being. And I know she really cares about the diabetes community a lot. Thankyou.

  3. Julia
    Julia May 8, 2011 at 8:19 am | | Reply

    I see the parents of children with diabetes who are more stable, or whose numbers do not fluctuate as much, hence, feel it is safe not to test often, are still making judgmental remarks about the ones that do. Assuming that when our child comes home from school we first ask “how were your numbers” rather than ask about the Math test! Once again, stating that we are tightly controlling our child and THAT is the reason we have many low blood sugars. When you should know that the diagnosis for this disease is “Diabetes Mellitus, UNCONTROLLABLE.” It is what it says it is… “Uncontrollable.” Stating, INCORRECTLY, that testing interferes with the ability for a child to feel their lows. Never heard that one before; will have to run it by our endo. Hypoglycemic unawareness will become more common the length of time your child has had diabetes. It is a secondary symptom of the disease. Many people who have had Type 1 for five years or more will become hypoglycemic unaware…. it is not as simple as “resetting the glucostat.” For us, our child can and does feel her lows, but only when standing. Never when seated or asleep. Her only symptoms are shakey legs or being hungry. How many children wake from a very deep sleep and pronounce… “I feel low.” I would venture to say not many. For those of us who use or have used cgms, it is an eye-opener. Even on nights you think went well, you can see scarey dips in blood sugar. And when not using cgms, you can see a scarey dip in an hour on recently tested night-time basals taken just the night before. Just as I would NEVER insist a Mom MUST get up and check her child’s blood sugar X times a day and X times at night and state they are unfit parents if they do not do so, I would never imply the reverse. You’re right, this is not a numbers game, so stop counting! Stop counting the amount of strips we feel we need to use to keep our child safe! Be it 8 to 10 strips a day, as we used when our child was 8 years old at dx (BEFORE puberty); or up to 15 strips a day, due to exercise, puberty or teen growth hormonal issues. YDMV means JUST THAT. Each individual mother or father, who looks at their child’s blood sugar patterns over time, who logs the numbers, analyzes them, witnesses the day-to-day and night-to-night issues, is an expert in their own child’s diabetes. Not your child’s diabetes; their child’s diabetes. Parents should use the good common sense God gave them and determine for themselves if they are going to stay up and check BS or go to sleep for the evening, not listen to the advice of another parent… on the Internet, no less. For those of you who don’t have issues at night, forget the tendency to think others are just doing it wrong, “running their child too tight,” overprotective and just thank God things are good in your house and you can get a good night’s rest. Remember, too, that this can change on a dime. Daily observation and careful analysis should be your guide. I can’t stress enough: Every person has a unique, individual metabolism. This disease is metabolic in nature. Even if you have two children with D in your house, each will react differently. Why, then are parents advising, judging and questioning other parents? P.S. IMO, making such an issue over blood sugar checks is ridiculous. They take all of one minute. She only really felt them in the beginning. As I mentioned before, it does not hurt her and she does it routinely, not batting an eye. Ten to fifteen minutes a day is no big deal. She’s tough and D has made her even tougher. Parents, Man up; my girl has long ago.

  4. Michelle
    Michelle May 8, 2011 at 9:59 am | | Reply

    I don’t let my child leave the house with a dirty face, or hands. I make sure his clothing is clean and his hair combed. I make sure his homework is done, and his teeth are brushed. I make sure he is respectful to his grandparents, his teachers, his elders. I don’t let him watch TV or Movies that I don’t approve of and I don’t let him play violent video games. I don’t tolerate back talk, sass unmade beds or late library books.

    If I care this much about such daily minutia, things that keep life going smoothly, then you best your butt I’m checking bg at night and paying close attention to something as important as Diabetes care. Anyone that wants to say I hover can go right ahead and I will happily take that as a compliment. To do anything less than that would be a failure on my part as a parent.

  5. To Luke’s Other Mothers | Luke's D Day

    [...] talking about Luke’s day first and his blood sugars second – I try, but my parental inclination is to focus on keeping the D monster at bay, often to the neglect of Luke himself (who right now [...]

  6. Tarrin
    Tarrin May 8, 2011 at 8:09 pm | | Reply

    I had to step away for a few days.

    I’m really sorry if I sounded so volatile. I was angry.

    I don’t blog. I have a facebook account, but hardly ever use. Twitter overwhelms me.

    I do read blogs. I started reading them about 5 or 6 months ago. I’ve found many bloggers with whom I identify, and I enjoy reading their stories. (Mostly mother blogs. I’m a mother. I identify with mothers, and I have some favorites that I check/read everyday.) I never comment, because I have to create an account, and I’d rather just read. Besides I don’t want a bunch of junk mail, and I don’t know if that would come with creating an account.

    Anyway, I read this blog several times a week. Mainly because I appreciate the technology updates.

    I just feel like this poster came out of nowhere. I’ve never seen her leaving nice supportive comments on the other blogs I love. The first I heard of her was when I saw the Type 3 post on Six Until Me, then that letter to the senator, and now this.

    My opinion is that she is looking for accolades at the expense of others. This time, I felt personally attacked as a parent (of a teenager, might I add). Those other posts left me unsettled, but didn’t strike the personal chord that this one did.

    At any rate, I’m sorry if I sounded mean. Remember, though, that my previous comment was in direct response to the very things she wrote.

    I just called it as I saw it.

    And now I’m done with it. Good-bye. Going back to my google reader, where I’m happiest.

  7. Julia
    Julia May 9, 2011 at 9:32 am | | Reply

    My comments were quite stern but I felt the advice given was downright dangerous. Moira is a tireless, well-known advocate for children with diabetes and is, no doubt, repeating advice that was given to her over the years… by endos, diabetes experts, mental health specialists, etc. And her own personal experience of raising a Type 1 teen. I am well aware the constraints of diabetes care can and does cause teens to rebel. And that we must watch out for and deal with these issues if they should arise. IF and WHEN our teen rebels, we will deal with it.And, yes, she may very well decide to ease up on blood sugar testing when out with friends and I will not nag her too much about it. Perhaps two or three years of suboptimal diabetes care won’t make much difference in the long run. But I am certainly not going to start with suboptimal care. Then, again, it is very likely she will wear her Dexcom all the time once it communicates with a pump and she will not need to do many blood sugar tests. We do a LOT less testing with the Dexom on. Moira is telling her personal experience to warn other parents. And that is great. It was the tone of the post, and other posts I have read by her that I object to. Yes, there will be diabetes burnout. I count on that. But what of other chronic diseases: Cystic fibrosis, for example? Do other parents admonish to cut back on the daily breathing treatments because they are onerous and painful so the child can experience a more “normal” carefree childhood? Of course not. Of course not. Make no mistake: Blood sugar control is a virtual lifeline for your child. The effects of poor control will not manifest itself for years. But they may manifest. For those diagnosed in childhood, this means they may manifest in early adulthood. We are determined to give our child the best chance possible. She has not minded so far and I believe she will thank us for this one day. Alternatively, if she should develop complications at an early age because we did not do all we could to help her, she will question our judgment as parents and, rightfully so.

  8. Deckard
    Deckard May 23, 2011 at 10:30 am | | Reply

    Obviously this post has set off a myriad of emotional responses from many commenters so it’s definitely a topical issue that Moira has posted. As a Type 1 since 1986 and a parent to a 7 year old son with Type (dx at age 3), I can tell you from personal experience that with Type 1 diabetes, if you do the work, you get the results. The work is hard and time consuming. And a huge part of that work involves bg monitoring, healthy living, and not getting stressed out about occasional highs or lows because that is life with T1, period. After 25 years living with T1, I have no complications and maintain A1c’s in the 6′s as does my son. I credit luck and work for that. Another reader posted that T1 is a metabolic disorder and affects everyone differently … kids and adults. Parents are correct to do what they need to do to ensure their child is safe and develops good glycemic awareness … high and low so they can self-monitor and self-control their own diabetes when ready. Most endos will tell you that too-tight control is not good for kids because it can distract from this hypo-awareness that is essential to self-management. Yes, T1 management in kids can be a lot of work for the parent, especially when it involves getting up multiple times at night …. it’s a HUGE learning curve that is ongoing … you have to really understand the peaks and ranges of insulins, carb reaction times and cause and effect implications of corrections … pump or MDI, so you need to work with your endo’s closely to get the information you need to maintain good blood glucose controls and a healthy life balance which is all part of living well with diabetes. I’m curious to know, and perhaps this is another post topic Diabetes Mine can consider, is the overall time commitments required by parents to manage their child’s diabetes and the effects on work/job, relationships, finances, family, health & stress etc.

  9. Tricia
    Tricia November 29, 2011 at 8:46 am | | Reply

    I’m not sure if anyone will even read this comment, as I am posting months after this thread was started! But as a 32 year old Type I who was diagnosed at the age of 14 (right in the middle of volleyball playoffs!), I have to say a few things. First of all, I commend all of the parents out there–including my own. I know the worry, pain, and sleepless nights you must go through! That being said, I have to share my own experience. I am pretty sure that if my mother–who is an RN–had woken me numerous times during the night to check my blood sugar as a teenager, I would have either rebelled even more or completely ignored my diabetes. EVERY parent needs to do what is best for THEIR child. And once your kid is no longer a toddler, does their own checks, shots, infusion changes, whatever, TALK with your child about how you can work together to manage this disease. Numbers are not going to be perfect…and for a lot of kids (like me; I’m a perfectionist), being asked what my numbers were made me feel ashamed, guilty, and angry…especially because I didn’t usually have an answer as to why I was 200 one day after practice and 40 the next! This made me not test very often at all…it was easier to not know the number than to know it and feel like crap about it! EVERY KID IS DIFFERENT!!! Even as an adult, I know my parents worry about me. I am not lucky enough to have a husband or a family of my own, and I am pretty sure that my parents freak out every single night, waiting for my 5:30 AM call to tell them that I am fine, etc. I have woken up numerous times at 6:30 with my mother trying to force gel down my throat or a glucagon into my leg (my house is about 45 minutes from my parents). I know parents have a lot of heartache over this. But please remember–what is best for one family is not always best for another. Respect each other!

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