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Thoughts?

Discussion in 'Parents of Children with Type 1' started by lisalotsamom, Mar 15, 2008.

  1. lisalotsamom

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    I ran into an aquaintance last night. Her almost 5yo was diagnosed with D right around Halloween. I posted a while back about them pursuing Holistic therapies for their daughter.
    Mom told me that dd was able to "need no insulin at all for about a month, and then her blood sugars were creeping up to around 160-180 after meals". They are now on Humalog and Humalin NPH, and mom said she's "only getting 2 shots per day". Mom said that the dd is on a mainly protein and vegetable diet, with few carbs and those are low glycemic foods. She eats things like flax bread, drinks almond milk, that sort of thing.
    Mom said her latest A1c was in the around 5.7 (can't remember exactly, but it was close to that, in the high 5's) and that she hopes to get it down to the 4's by next time. It sounded like mom has the little girl on a very regimented, strict schedule, and she also said that they no longer need to check her at 3am (getting up at night was a big deal for them when she was first diagnosed), and her blood sugars are normally around 80-90 when she wakes up in the morning.
    AT the time she was telling me all of this, my Tessa was eating chocolate cake for dessert (we were at a Church Fish Fry), lol. I came home so bummed out, that I'm obviously doing something wrong letting my child eat regular foods, many of them processed and some high glycemic. We *always* check her at night, and often have days of yo-yo blood sugars. NPH just didn't work well for us, with having to keep a strict schedule and eat a certain number of carbs at a specific times. This other mom has one other child a year older (7yo), so probably doesn't have quite as much running around with other kids as I do with more children.

    So, is this just a case of YDMV, or is she on to something? Or is her child too tightly controlled, not eating enough carbs for growth and development? The little girl looked great, running around, playing, and seemed fine. I definitely got the feeling that mom felt she had "gotten control" of the diabetes. I wanted to tell her that she should brace herself and not be discouraged if and when things change, but didn't want to burst her bubble.
    What do you think? I came away from the conversation feeling like I wasn't doing everything right for my daughter, but now wonder if it's the other way around. I know there is no *one* way to do things, so is this just a case of YDMV like I mentioned above?
     
  2. Just Me

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    Personally, I think diabetic kids want to appear as normal as all their friends and that is one of my goals with diabetes. Not to make my ds feel different. I feel sorry for that little girl! LOL ... Can you imagine growing up and as a child not knowing what chocolate cake tastes like? LOL
     
  3. Treysmom

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    My own take on this I want Trey to grow up as normal as possible. So if I have trouble with "uncontrollable bs" because I let him have a little piece of cake now and then so be it. I believe that it is my job to teach him to eat a balanced diet including treats. That little girl is controlled right now. When she is older she will sneak foods. By teaching our children balanced eating we are hopefully going to prevent sneaking w/out bolusing.

    This is my own opinion.....
     
    Last edited: Mar 15, 2008
  4. MamaC

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    Lisa,

    I would say that the child is not getting what she needs to grow properly. And isn't an a1c that low considered by some to be TOO low? I'm all for tight control but that seems extreme.

    Becky
     
  5. hold48398

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    Oh Lisa, you are a WONDERFUL mom!! (And the girls and I enjoyed meeting up with you yesterday!). Your little Tessa is a happy, healthy and very well-adjusted beautiful little girl. Don't ever second-guess yourself!!!

    Sounds to me that the little girl is having a heck of a honeymoon still. Mia's honeymoon lasted well past a year, and at one time, she didn't even need ANY insulin!! Now with NPH in the background, this may be enough at this time to cover few carbs she seems to be eating during the day. Obviously the mother believes in a strictly holistic lifestyle and diet, which she imposes on her child. I think she will get a rude awakening when she finds out that despite her best efforts, the honeymoon will end at some point and independent of what her girl eats, healthy or not, she will need more insulin!

    Personally I am all for healthy eating but I don't think it is fair to the little girl to impose such a restriction of lifestyle and diet upon her which will make her an outcast in school and among kids of her own age. For me the key is moderation, and I think it is perfectly ok for my children to have a piece of cake or a cup of soda as long as it is part of a well-balanced overall diet that doesn't separate them socially and emotionally from their group of peers.

    I wish that family and certainly their little girl the best. Most of all, I am happy to hear that they are in the care of an endocrinologist, so that her medical care will be followed up upon regularly. A low A1C does not necessarily mean good control, as we both know, and I would want to be sure that she is not having low BG episodes which have gone undetected. As far as being friends with that family goes, I probably wouldn't "chive" with them so well because I don't see eye-to-eye on with how they are managing diabetes in their young child and I would have a hard time seeing past that.

    In either case, don't let their lifestyle and diet decisions make you feel like you are doing something wrong by letting Tessa live a "normal" life. In fact, I think that family should question their choices and how the decisions they impose might affect their daughter emotionally and physically. YOU are a GREAT mom, Lisa!!
     
  6. nebby3

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    I wouldn't let this woman's approach influence what you do. I am afraid she is in for a rude awakening when her dd's honeymoon ends. I also wouldn't want to be that kid who is kept on so strict a regimen.
     
  7. Lindy

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    Lisa - I know that my child's A1c would be better by eating better foods - that's just reality. Is it realistic for us - no.. With a pump and sensor we can manage our child in the 6.5 range (which is good).. and that's on your average American diet.. Our child has snacks with his class, eats at fast food rest., has pizza, candy, chips etc. The only thing we have cut out for him is regular pop and juice. So if I was going to get him in the 5's - I would have him cut out a lot of the junk - have him eat more raw foods.. It's really not a bad plan - and I see value in my entire family eating better! I can see where a child's blood sugars would be more level eating healthier foods - with a sensor you can see what 20g. of a banana do, vs 20g of french fries! There's a difference... But, right now I'm ok with our decision to continue the way we are - and make small changes that are healthier for all of us...
     
  8. sugarmonkey

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    This kid is too restricted. One day she'll rebel and sneak foods. I think kids need to be allowed treats sometimes. What about christmas etc. No kid wants to miss out on Christmas treats.
     
  9. saxmaniac

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    Sounds very Dr. Bernstein-ish, whose nutrition theory boils down to "there are no essential carbs".

    Some people are just like this, even without D. So, I think it's their right to try it out. Either healthy is a great thing, I think. We should all cut all the garbage out of our diet. I just can't do it.

    I don't think it's likely to work out in the end. Probably, the kid will start sneaking food to make his parents happy, and blow the A1C. The kid is going to have friends, and go to parties. The worst thing that might happen is the parent may think they don't believe the A1C, because their therapy is "obviously working". There's a big opportunity for self-delusion here. I can make Alex's meter bs average look incredible if I only test when he's likely to be in range.

    Some food for thought here. Alex has been happy, playing, and lucid... and 39. So, if I merely pumped him full of insulin, didn't check that often, he'd just be low all the time, look OK, and have a fabulous A1c. Just because she looks fine doesn't mean there is no danger.

    I think there are some merits to the super low-carb thing, but I think I want Alex to make that decision for himself when he gets older.
     
  10. Abby-Dabby-Doo

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    My own personal opinion on the subject is huge possible rebellion from the child later on. It makes it harder for the child in my opinion to fit in, it's hard enough to fit in with "the other kids" but you put a strict anything on top of that, and it gets even harder. Having a small amount of carbs for a growing child is not the proper approach IMO. I'm kind of looking at it as almost a punishment for the child, and I want my daughter to look at it as a hicup.
    I'm all for healthy eating, but I'm also for fun celebrations, treats, and just plain wanting to try something. Don't we all kind of overlook a new candy bar that comes out on the shelves a couple of times? ;)
    Didn't mean to offend anyone, it just isn't what I would do. I don't think there is a right or a wrong- but I do think it is just another person out there that is making it harder for our kids to get treated like everyone else.
     
  11. Just Me

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    Amen to that!!
     
  12. Boo

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    I agree with Nicky (a.k.a. "Lindy"). I am glad the girl is under the supervision of a qualified endocrinologist, and hope that the mother has a reasonable understanding that her daugthers insulin needs WILL increase as she gets bigger (especially during puberty). I suspect that with her controlled diet and lifestyle, they probably will have an easier time managing her diabetes than those of us who choose to give our children a bit more freedom with their diet.

    To me, it is a bit of a trade-off...a quality of life issue. They may likely have an easier time with more even control, but will the daughter rebel as she gets older? Who knows?! If the whole family eats that way, it might just be normal for them. I know that I can't live that kind of controlled life. Sometimes I feel guilty about that since I know it may not be the best for my son's health in the long run. I KNOW that if I restricted his diet more, he WOULD rebel. That is his personality.

    There is a bit of concern on my part about how a high protein diet might affect future kidney function.

    You gotta do what's right for you and your family. If it is working for them, and they have realistic expectations of the future, I think that's great. I hope the daugther is well adjusted and okay with her strict regimen.

    Putting diabetes aside, I know several families with lifestyles way more restrictive than my family's. One family doesn't own a television. The children are home schooled (no offense to the homeschoolers here ;)). They are vegetarian. The parents are intelligent, but very odd. However, the children are lovely, smart, polite, and seemingly well-adjusted. It's what works for them, and the children are obviously fine with that life-style. I know I could never live that way! (I like watching "LOST" too much! :D)

    To each their own. I wish them the best of luck. But as previous posters have said, don't let it make you feel guilty for your choices.
     
  13. bgallini

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    I agree that this is not what I would do for my child. But many parents with non-D kids have them on restrictive diets of some sort. I have relatives who are vegetarian. I have other relatives who don't eat red meat or only eat organic stuff. And some of them really limit the amount of junk food. Then I have relatives on the other end of the spetrum...the kids who seem to only eat junk food and high sugar cereals etc. Me? I'm perfect, of course, my kids eat a perfect balance of junk and healthy foods! :p (And my kid is the only diabetic in the group.)

    I wouldn't spend too much time judging this mom. Her child may grow up to enjoy eating this same diet and may never rebel. It all depends on how the parents handle it. While I can see my vegetarian niece and nephew rebelling in a variety of ways, I'd be really surprised if they ever decide to become meat eaters. So, it's possible that this will work for the child with the flax bread. Hopefully this mom can also understand that it's not appropriate for her to judge you either.

    But I also think that the child is probably honeymooning and is likely to have times when control isn't so tight....unless mom is really really controlling everything and stays on top of it. I, personally, think I need to spend more time doing other things and not hovering over my child trying to get him to an a1c under 5 (or 6 for that matter).

    I think you are right that this is simply a matter of ydmv.

    Barbie
     
  14. Karenwith4

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    I think it is one of those YMMV situations.

    I think it is great that they are finding ways that work for their family to promote a healthy lifestyle for their daughter and more importantly to help them feel in control of D which I think makes a huge difference in how families cope.
    I also think that there are many shades of normal. Where I live and with the friends we have, it is perfectly normal to eat a diet similar to what you described and my kids wouldn't feel as though they were missing out. Because we homeschool meal time with other kids isn't as much an issue as it would be in a school situation. If this person is inclined to follow a holistic approach she likely has like-minded families around her or is seeking them out so her daughter may not feel as though she is different.

    I think that there is a place for traditional medicine and naturopathic/holistic approaches to work in tandem to provide a healthy support for families.

    I'm sorry you are feeling down about this. I think - as with all things - that a parent's instincts are powerful and if you feel there is a need to re-assess what you are doing for your family, you'll know if and when you get to that point.
     
  15. Jacob'sDad

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    My opinion is that it's very hard to argue with success. Some people just lead different lifestyles and rebellion is NOT an automatic thing. For example a child growing up in an extremely active family where biking, running, hiking are the norm does not automatically grow up and start being less active just because most of their friends are. A child growing up in a family with no alcohol does not automatically grow up and start drinking because some of their friends do. A child that grow up in a Christian home does not automatically abandon their faith because many of their friends do not share the same faith. Yes, in many cases a child may rebel against what their parents teach them, but it's not a sure thing, and if their not hurting their child it's none of my business how they live.
    Their kid has a great A1c and seems to be healthy. I say leave it at that.
     
  16. twodoor2

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    Sounds like she's honeymooning big time, and they will get a huge awakening when she comes out of it. Maybe some of this holistic approach is keeping the remaining beta cells going longer, but eventually, she'll come out of her honeymoon. I don't like the "few carbs" for a growing child. Although I can completely understand staying away from high GI carbs and a processed diet, I don't like the idea of limiting carbs for a child, and giving such a strict regimented lifestyle. The child will rebel at some point. I rather give my kids a little of some of those "bad" foods, then not at all. We do the flax bread and the fruits and veggies, but in Western society, it is so difficult to maintain a diet like this for growing children. They want to eat french fries, pizza, candy. I've tried doing the healthy regimen, and it is difficult. However, we still give carbs and I try to maintain a healthy balance of carbs, protein, fats, etc. . . Again, it may help with BG, but once the honeymoon is over, it is very difficult to manage blood sugars. I just cannot imagine taking Elizabeth to a birthday party and telling her, "no, you can't have any cake."

    I personally don't think that 5.7, let alone 4, is a safe and realistic A1C for a diabetic child of that age. Again, I do think the child is heavily honeymooning, I also don't feel comfortable with such low waketime numbers, but that's just me. I'm very comfortable with a wakeup number of 130, or anything in the 100's above 110. How do they know she's not going low in the middle of the night?

    IMHO, I think there should be a healthy balance between healthy eating and having "fun" and eating regular foods once in a while. I do think this is big case of YDMV and heavy honeymooning. She's probably on so little insulin because she is honeymooning. I've seen parents feed their kids gobs of fat and sugar, and high GI foods, and the BG numbers only go up to the 200's. If I fed my daughter that, she would skyrocket.

    Isn't this also the same mother that didn't want to give her child insulin in the beginning and wanted to do the holistic approach? I find something very wrong with that.

    Without living in their house everyday and without knowing exactly what goes on, how could you know truly how well the child was doing? You don't know the whole story, so don't beat yourself up over it. We all want the best for our children, and no one has a clue what goes on in her house, my house, your house, except for ourselves. People can talk all day long, but there is no such thing as perfection. Don't let her get you down.
     
  17. czardoust

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    This child is in danger. :( 6.0-7.0 is the goal.....4 could be another hospital admission.:eek:
     
  18. Jacob'sDad

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    I'm not sure why it's so hard to believe that a child eating a low carb diet and low glycemic index foods can have a legitimate A1c of 5.7??
    What possibly would push it up any higher? If there are not many carbs to raise BG, then BG will stay down.
    Now, that mother may be in fantasy land as far as getting the A1c below 5 but she was also in fantasy land when she thought she could keep her daughter off insulin forever. When THAT bubble burst she did the right thing and got the girl on insulin. There is no reason to believe she will not do the right thing when she learns that an A1c less than 5 is just unrealistic.

    I, for one, am not convinced that they are doing harm to their child. I say this because I am not 100% convinced that there is a certain number of carbs that are essential for a childs health.

    Imagine if CPS came in and told these people that they were not allowed to manage their childs D the way they believe is right. Would it really be any different than the way people on this board have been treated by people who think they know what is best for THEIR child?
     
  19. twodoor2

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    I don't know this woman, and I cannot judge her and say that she is doing her child harm. I was deeply concerned when she said she wasn't going to give her daughter any insulin initially (if that's the same woman I'm thinking about), but I'm glad she did the right thing and got her on insulin.
     
  20. wilf

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    I'm tending to agree with Jacob's dad here. The A1C is great, and speaking from personal experience I can attest to the fact that numbers like that can be achieved without in anyway endangering or "tightly controlling" a child. While the A1C may have been achieved in part because the child is honeymooning, lots of families never see a number like that in their Type 1 children (even when honeymooning). So which child in which family is better off?

    It's a complex question with no right answer, and one which goes beyond the time I have to post here tonight. I think there is a lot to be said for a healthy diet. I think the "average" North American diet is not healthy, and I respect families that consciously choose to feed their children healthy foods. I have found as well that if our DD is eating healthy lower GI foods then on many nights there is no need to test - for sure any night where we eat "restaurant" foods we do need to test.

    Obviously the Mom will not be able to achieve an A1C in the 4s, in fact the trend will be for them to rise from here on in. But there's time enough for her to learn that through experience. The original post attests to the fact that the child "looked great, running around, playing, and seemed fine". If that's the case, then the parents are probably doing something right and we'd best leave them to it..
     

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