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New here, with a ketone question

Discussion in 'Parents of Children with Type 1' started by isaiah268m, Mar 31, 2006.

  1. isaiah268m

    isaiah268m Approved members

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    Hi all,

    I just found this forum, though I've been to CWD many times over the past 9 months. Sorry this is ending up so long...

    I have a question regarding ketones. Our daughter Laura was dx with Type 1, 10 months ago in the ER, where I had taken her because of severe weight loss (she was down to 72 lbs) and the drinking/peeing thing, etc. The ER nurse tried to encourage us to go home and seek counseling for anorexia (WHATEVER!)....but that's another story. Anyway, Laura's bg was 834. A1C was 27.3! So she'd obviously had high bg levels for a while. No ketones. Never any ketones since then. A good thing, except.....Laura has had some rare diabetes related issues since her dx. Severe - SEVERE - painful swelling of her legs and feet for about 2 months following dx, according to her endo this is occasionally seen in older (Type 2?) patients. This past January she developed "rapidly progressive cataracts" in both eyes. She basically went blind in her left eye within a 2 week time frame. Both cataracts have been extracted (the left one was extremely thick and "crevised" (sp?)) and sythetic lens implants put in each eye. The cataracts have been diagnosed as "diabetic cataracts" but neither the opthomologist or Laura's endo had ever seen these in someone so young, and especially someone so recently diagnosed with Type 1. I should mention that Laura has done very very well at controlling her bg levels. She generally is in the 100-150 range, with occassional spikes when she's sick.

    So, Laura asked her endo yesterday why she is getting these rare symptoms/disorders? What more can she expect along these lines? Why no ketones ever? And is the fact that she has no ketones somehow related to the rare problems? He found her questions valid and very worthy of research. He's planning on doing some further testing on her, looking for some other underlying diabetes related disorder.....

    And so, I'm sitting here going, huh????

    Has anyone ever had any experience with this or ever heard of a teen Type 1 diabetic never having ketones, and/or ever having either of these symptoms (the swelling and the cataracts)? Can anyone direct me to where I might research this on my own?

    Thanks!
     
  2. allisa

    allisa Approved members

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    Wow, what an ordeal you have been through ! I am so sorry for you and your daughter to have hard such a turbulent time.

    I am by no means an expert...just a mom who has a 8 year old boy diagnosed for 3 years now.

    Ketones come from the body breaking down fat & mucsle to try and get glucose.....is it possible that her body had actually done all that in the early onset ( when no one was thinking of or checking for ketones?) and really has nothing to "turn to" now ...... ie no ketones since then.....did your daughter gain back her weight ? Or is she still underweight ?

    Perhaps the cataracts and swelling of the legs are LATE effects from the long time with Diabetes undetected ? It seems as though her diabets went on longer than other children....an AIC of 27 is pretty startling !

    I wish you and your daughter the best of luck....and if you don't find your endo's answers satisfying....I would seriously consider switching.....your daughter has obviously had some rare occurunces and she needs some extra attention and insight.

    Let us know how she is !
    Allisa. mom to 3......middle one with Diabetes
     
  3. EmmasMom

    EmmasMom Approved members

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    I'm so sorry!

    I can't imagine how hard this year has been on you and your daughter! I think we all hope that these complications can't happen until later in life, but obviously that's not always the case. I have known two T1D's that were already losing their sight at diagnosis. They were both sick for a long time before they were dx'd. It's so horrifying to see what uncontrolled blood sugar can do!
    I have never heard of anyone with 800+ BG not having ketones. My only hunch is that maybe she had already burned all of her fat stores. Since ketones are a byproduct of fat being burned for energy, maybe there comes a point when you just don't have enough fat left to burn, thus no ketones, despite starvation. :confused:

    When I'm searching for answers I usually browse through medical journals online. You may be able to find something...

    Best of Luck! If I find any information I will post it for you.
     
  4. isaiah268m

    isaiah268m Approved members

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    Yes, she gained her weight back within a few months. She's now a healthy 110 lbs - perfect for her height. She DID have literally no fat left on her body at diagnosis - we had a really hard time finding injection sites. She was dropping weight at a rate of about 4 lbs per week when I took her in....that's what confuses me about her not having ketones at that point, she was still losing the weight. Is it possible to use up all your ketones? Never even thought of that, maybe she wiped out her bodies ability to produce ketones?

    And now that the weight is back on, she continues to never have ketones, when she's sick, when her bg levels are high, even now when she's on steroid drops following the eye surgery. I know we're blessed for not having the ketones, but am concerned at this point at the "why nots"

    Thanks for your input. You've given me some things to think about.
     
  5. EmmasMom

    EmmasMom Approved members

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    Just a thought...

    Have you checked blood ketones since diagnosis, or just urine? Maybe her body isn't spilling them out into her urine for some reason.
     
  6. isaiah268m

    isaiah268m Approved members

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    That's a really good point. How can I check her blood ketones? Her current meter doesn't check for that.

    Thanks!!
     
  7. Jana

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    The Precision Xtra meter by Medisense checks for blood keytones. If you contact the company, they will probably give you a coupon for a free one (that's how we got our new one). After all, they make all their money on the strips. Check to see if your insurance covers the strips, but don't avoid a Precision Xtra all together if they don't. Blood keytones are much more reliable than urine strips.
     
  8. isaiah268m

    isaiah268m Approved members

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    Thanks Jana, I'll definitely check into that.
     
  9. EmmasMom

    EmmasMom Approved members

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    We also use the precision Xtra to check for blood ketones. It's fast and easy and you can do it at home. Otherwise you would have to have a lab test done.
    Does her endo seem very concerned about this? Combined w/ Laura's early onset of complications I would definitely PUSH him for answers. If he can't give them to you I would find a doctor who can.
     

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