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unexplained ketones

Discussion in 'Parents of Children with Type 1' started by Grace's Mom, Jul 17, 2013.

  1. Grace's Mom

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    My daughter (age 10) has had unexplained ketones on and off since December. She lost 15% of her body weight in the winter months, but the has not stabilized. She has not grown in height since last fall. She's a very active competitive gymnast. She has stomach pain several times a week, some with ketones and some without. She has been off of gluten for one year, we are not sure if this is helping or not. She goes to be fine, and wakes up with a good number (100-150) and has ketones when she wakes up. Two to five days a week there are ketones, and often the darkest, largest ketones. We can attach with insulin, get rid of them, but often they come back within the day as moderate before we really beat them. It seems there must be something else going on. We initially thought it was exercise related, but the ketones appear one days when there is only limited activity and persist on these days as well. Her last A1C even jumped to 9.4 and we were so alarmed! We count, we are careful, but something isn't right. Help.... does anyone have any ideas? Our doc is talking about celiac and thyroid blood work in the next week, is there anything else we need to think about? I feel like our doc is trying hard and we love her, but we just don't have answers. I'm so frustrated with my daughter not feeling well. Type one should not be this difficult. She's checking ketones multiple times a day, doing BG's 12 times a day and being a trooper -- but it just doesn't feel right.....
     
  2. TheFormerLantusFiend

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    In 2008-2009 when I had thryotoxicity I went from 119 lb to 97 lb and generally had trace or small urine ketones even when bgs were fine.

    P.S. The A1c rose a lot? My A1c in that time period rose too, but only to 7.2, from 6.3. Thyroid disorders can make it harder to manage bg.
    With ketones and a large A1c rise, maybe the bgs can be explained if your daughter is avoiding shots or sneaking food.
     
    Last edited: Jul 17, 2013
  3. mmgirls

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    Do her meter bgs relate to the A1C?

    My first thought is poor nutritional intake due to the celiac damage, then I think of the A1C and think that it might just be insulin deficet but that you are so used to ketones and are being aggressive with correcting?

    I think that blood work will help you narrow this down.

    Does she take breaks from competitions and does that change her symtoms?
     
  4. Connie(BC)Type 1

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    Sounds like starvation ketones, do they go away with carbs? Only in the morning?
     
  5. danismom79

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    You talk mainly about ketones and her fasting bg, but are you verifying her bg checks the rest of the day? Is her meter average not matching the A1c?

    Do you have access to a blood ketone meter?
     
  6. Megnyc

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    Please don't be offended by this, I feel like I have to ask out of concern. Is there any chance at all she is withholding insulin to lose weight and/or reduce growth? I was involved in competitive gymnastics as a child and remember the pressure to stay thin and small. I know some girls (and their parents even) went to great lengths to delay puberty.

    I'm not saying she is doing this but it is something you might consider looking into.
     
  7. mmgirls

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    They already have a Celiac DX and have gone GF, I beleive she stated in a past post that it was biopsy confirmed.

    So in that situation, a recommendation of eating gluten would not be advised. I beleive that the would run the tests again to see current status and maybe do another biospy to see if there is still damage. At this point they would be looking to see if there is still gluten somewhere in her diet and if not recovered yet could be the cause of the ketones.
     
  8. Sarah Maddie's Mom

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    Wait... what's the link between celiac and ketones? I haven't heard this :confused::confused:
     
  9. Sarah Maddie's Mom

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    To the OP, the A1c suggests that her bg is not in the 100-150 range very often and that she's averaging closer to 230ish. Are you sure that she's covering carbs when she's not with you?
     
  10. mmgirls

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    IF the Celiac is not under control then she would not be getting the nutrition from the food that she is eating and her body would have no other choice but to fuel itself by ketosis. This would also explain the slow growth and weight loss.

    I only mean for those with Celiac where there is still significant damage, not those that are DXed with Celiac and have recovered otherwise after goiing GF.

    To the OP, is her normal diet on the low carb side?
     
  11. missmakaliasmomma

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    So, your post made me curious to see if my daughter could possibly be going through the same thing since she's been a little moody (hard to tell why with girls though! lol) and.. she was. I tested her blood sugar after eating an ice pop (160) and her ketones were 1.6. She ate a meal about 4-5 hours ago and hasn't really been high all day except for the spike in between breakfast and lunch which she normally has. She was actually 72 before the ice pop.

    Anyway, I'm saying this because I did call her dr and get ahold of her. In the midst of her telling me what to do about them (although I do know what to do about them normally- you know- sick days, high BG, etc), I asked her how many carbs my dd should be eating a day because I honestly wasn't really sure. when we went on mdi after being on nph, I was just told she could eat more and more often, not how many carbs she actually needed a day. Of course I found out she's supposed to be getting a lot more than I feed her so her ketones are most likely starvation ketones. She complains of stomach aches every so often but she's only 4 so it's hard to know what the problem really is. She could just be hungry when she has stomach aches. So I feel horrible now and am a bit embarassed that she could be having ketones because I'M not feeding her enough, but wanted to tell you that maybe your daughter needs more food too, especially if she's losing weight fast because of such increased activity.
     
  12. Amy C.

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    Your daughter is not getting enough insulin. I would be worried less about the ketones and more about finding out when she is going high.
     
  13. danismom79

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    I'm a little confused after reading old posts. The child in the OP is Anna, the 10-year-old? Has she actually been diagnosed with anything? I only see mentions of Grace being dx type 1 and celiac in 2009 (but your sig says 2008?), and the whole family being off gluten since Grace's dx in Sept. 2009. But that changed at some point, and now Anna has only been off gluten for a year?
     
  14. Grace's Mom

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    So many ideas -- thank you!

    Wow, you have all been amazingly helpful and insightful, thank you! I'm not sure I can remember all the questions, but I will try.

    This is my youngest, Anna. She does not have celiac, but is GF as it seems to help alleviate tummy pain. Her sister Grace has celiac and type one. Anna did have a colonoscopy and an endoscopy about 18 months ago, and both looked good -- we were trying to be extra cautious in looking for celiac -- thankfully she doesn't have any signs of it in blood word or biopsy.

    We ended up in ER needing fluids a couple of nights ago and they ran labs. They checked thyroid as well, it was 3.7. They said that was good. hmmm.. I was thinking it might be thyroid -- maybe not.

    The idea of trying to lose weight or not dosing -- really not so applicable. I homeschool and work form home, spend most waking hours with the girls and this is my cling-on daughter who is by my side all the time, and generally hands me her pump to do the entries.

    Gymnastics.... she checks every hour monitor BG's (as per endo's request). She maintains beautiful BG's for the three hours of her workout, and has some snacks in there as well. Immediately after workout ends -- literally in 10-15 minutes, she spikes to over 600 with no food or drink. This seemingly adrenalin rush has been consistent for the past few years -- both she and my daughter Grace get these crazy highs post workouts. We are careful to only do a partial adjustment as they come down hard on insulin -- like a half dose if often too much and gets them to a good number within 60-90 minutes. Without any post workout does, the girls stay at the crazy highs. Weird but 'normal' in our home.

    Mornings -- half of the time she wakes up with moderate ketones. Another struggle with the mornings is that she is not a morning girl and is not excited about food in the AM. For the past 5 weeks the gym workouts have been in the AM, and that has made it more challenging. She eats in the AM, but I often worry she should be eating more then.

    Skinny - Our gym has been amazing in not promoting the super skinny thoughts -- it's always hard to know what girls are thinking inside, but it doesn't seem to be an issue.

    Starvation ketones -- I wonder if this could be the culprit. This afternoon we are sitting down to have her guide a menu for all meals and snacks for the next three days -- meeting the minimum 180 carbs that the endo suggested. Although she recommended more for workout days and the next three days will each include 2-3 hours of structured workouts and some recreational swimming in the afternoons as well. We try to eat a clean diet -- we love the Nourishing Meals Cookbook (highly recommend) so we will try this more is better eating plan and see what we get.

    Blood ketones -- I had no idea you could check ketones with a meter, instead of the urine dip. You intrigued me with this idea, and after reading up on them, I will be requesting one from our endo. Thanks -- they sound more accurate and will be a better tool for us.

    Meter average - A1C connection -- I'm not familiar with how to make this connection -- please enlighten me.

    Again, I appreciate your thoughts and ideas, and if I didn't answer your question specifically please forgive me.
     
  15. danismom79

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    Sorry she ended up in the ER. I hope she's doing better now. Did they give you any possible answers to what's going on? Stomach bug or anything like that?

    Re the meter average, an A1c of 9.4 would be equivalent to a blood sugar average of 223 mg/dl over the past 3 months. I don't know what meter you use, but it should allow you to see what her average blood sugar has been for various periods of time (2 weeks, 30 days, 90 days).
     
  16. Brenda

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    You can find how to convert BG avg to A1c and the reverse at https://www.accu-chek.com/us/glucose-monitoring/a1c-calculator.html

    That said, you need to understand exactly how the A1c has been calculated (and I may not be able to explain this very clearly): The A1c reflects the amount of glucose that "sticks" to red blood cells. Red blood cells have a 90 day life span. Over a 90 day period, a red blood cell slowly degrades/dies exponentially. So, a BG of 400 TODAY will have a greater effect on an A1c done tomorrow than an A1c done on Sep 1, for example. A person can have in range BGs (let's say 130) for 80 days, then run 140-250 so the A1c will be slightly higher (130 is an A1c of 6.15), maybe 6.4. Conversely, if your average BG is 240 (A1c of 9.98) for 80 days then it's 120 for that last 10 days before the A1c is checked, it may show the A1c is 8.6 (I do not know the specific amount). So, when your endo tells you your child's A1c, you can reflect upon the past three months to understand why that numerical value is what it is. As an aside, it seems that many people with type 1 become anxious about the endo visit, may run higher the week before the appointment/A1c check, see a higher A1c than expected. Hope you understand what the A1c really is.

    With OP's 10 yr old, the A1c of 9.4 means a BG average of 223. Was her BG average really 223? It is not clear, but it was clearly higher than mom thought for at least the week or two (maybe three) before the A1c was done. It could be that the post gymnastics adrenalin spike is causing the A1c to be elevated.

    As for the ketones, it is better to measure them with a meter--Precision Xtra or NovaMax. If the ketones are before breakfast, they are likely starvation ketones.

    Grace's Mom--please keep working with your diabetes team to get a better understanding of the elevated A1c and ketones.
     
  17. Grace's Mom

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    Still digging

    Thanks for info on converting A1C's. Yes, I believe it's likely accurate to her meter, but I will have to check when she returns from gym. It doesn't sound unreasonable when we are dealing with the spikes four days a week, and ketones 50% of the days or more. We made a menu of meals with 60 carbs per meal plus snacks for the next few days -- she chose every time on it -- so it should help her to eat much more. It will be interesting to see if we are able to keep the ketones at bay with this amount of food.

    I just requested a script for the ketone meter as well.....

    Again, I so appreciate this community! We are working hard to team with our endo, gi, naturpath and pediatrician. It seems it takes all four to look at the complete picture.
     
  18. mmgirls

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    I am curious about how many carbs she was getting previously compared to now?

    You may see some changes in the after gym numbers with the change in carb intake.

    Have you guys considered CGM's for your girls, I think it might be of a great benefit with the exercise they do to she exactly what is happening with their BG.
     
  19. Christopher

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    The Precision Xtra is a good meter and it does both blood glucose and ketones.
     
  20. Brenda

    Brenda Junior Member

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    Forgot something important in my earlier explanation about A1cs: Low BGs do not "pull down" your A1c.

    The ADA (and perhaps others) are working to eliminate the A1c as a "grade" of how your diabetes care is, switching to something that mimics the "average" BGs. I cannot remember what they want to call it.
     

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