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DD has ..not hypertrophy...the other one...

Discussion in 'Parents of Children with Type 1' started by shekov, Jun 30, 2010.

  1. shekov

    shekov Approved members

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    why can't I think! I may have permanently blocked it out of my mind.

    Endo appt. yesterday and she immediately notices dd's cute little butt dents (that I thought were normal muscle development. DUH!). We are using any site but the butt and changed to Humolog to hopefully prevent any future dents.

    I was/am in shock. Apparently it's very unusual for this to happen since the switch to human insulin from animal insulin They are unsure exactly what causes it but switching site placement and insulins has helped in similar cases. Not totally reassuring.

    AND, it's possible that the dents will fill in over the years.

    She's only 5. If this doesn't work she'll be a mass of dented tissue. I can't even fathom what this would mean her body will look like after a lifetime of injections or site changes.

    Today is not a good day.
     
  2. shekov

    shekov Approved members

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    I'm having trouble finding info on her condition since I can't seem to remember the name of it so if you know ANYTHING please let me know.

    On the plus side, her A1c was down and she tried an arm site that she is very proud of. :(:rolleyes:
     
  3. dqmomof3

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    I think it's lipotrophy. Sorry to hear that :-(.
     
  4. Ellen

    Ellen Senior Member

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    Lipodystrophy
     
  5. shekov

    shekov Approved members

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    Thank you for the word I have struggling to find in my brain. Off to do some research.

    Would love to hear form anyone who has dealt with this!!!!
     
  6. kiwikid

    kiwikid Approved members

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    Ivan's Mum has been dealing with this, but I don't know how often she gets on here now. Maybe you could PM or email her. :cwds:
     
  7. shekov

    shekov Approved members

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    Thanks kiwikid. I've sent a pm.

    My research is not going well. I'm not able to find much other than the info that tells me how much more rare it is now that we have switched to human insulin rather than animal insulin.

    Anyone have links to share? I'm a computer idiot.
     
  8. Seans Mom

    Seans Mom Approved members

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    Sean also has this. His endo seems sure that the "dents" will fill out in time. It's been almost a year since we first noticed them.
    He is also starting to show problems with his stomach sites, instead of "dents" the sites are poking out like lumps. :(
    I hadn't heard that changing insulin would help. We were just told to change areas for sites.
    Someone on this board did mention a cream that might help, our endo said she hadn't heard of any. Don't remember the members name though, they were going to try it and post if it helped but thought it might take up to a year to work.
    Sorry I know this isn't much help or reassurance.
     
  9. twolittleladybugs

    twolittleladybugs Approved members

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    I have a friend who's 5-year-old son has had this for a couple of years. They've switched insulin, rotated sites, nothing's really worked. She said one of the "dents" on his legs are starting to look better, but not at a rate that's very helpful. I think I heard the last strategy was trying to go unplugged with his pump. The idea was to put less insulin into each site. However, he had this on shots too, so I'm not sure if it's working. I'll ask her and let you know if they've found something that works. I think she said that our endos were not too helpful, just told them how rare it was.

    Good luck,
    Kelly
     
  10. Ivan's Mum

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    hi all, here it's called lipoatrophy, Van changed from novorapid in the pump to humalog and that seems to have stopped it but nothing has fixed the holes that are made. No fat on the stomach, two big dents on his bum. We're about a year since they DX'ed it and, don't worry we had those 'by crikey' moments when we wondered what took the doctors so long to figure out what was going on. He got lumps on his stomach but it was scar tissue from the site hitting muscle and now they've gone and a big flat expance remains.

    We didn't realise that he had a problem until we went pumping and the site stayed in the same place for a period of time, prior to that with injections it never happened. We had a problem starting pumping with the sites going pusy and that too was due to the insulin, we solved it with metal sites but since the insulin change, he can wear soft sites (though we're sticking with metal - way easier) so it's always been a problem, it's just taken the atrophy to figure it out.

    I was looking at his tummy the other day wondering if it was getting better or I was kidding myself, jury is out on that one. I'll try an attatch a photo when we first figured it out, but I've got dial up so it may not work.

    My doctors have been REALLY SLACK about it, I've asked for creams, investigated it (see some of my posts about a year ago about lipoatrophy) got some assistance on cream names and at the end of the day I had to PUSH to get the insulin changed (though I think they would have bent over backwards to help, if it wasn't funded by the government), was asked to take some medical photos for their records and basically forgotten about (public health system here).

    It's all very much 'wait and see' but I'm not holding my breath.
     
  11. Ivan's Mum

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    if you search lipoatrophy you'll find loads of posts. Including my first one where I thought it was the lantus. We only changed to humalog because it was the cheapest option first, lantus is the only one of its type that's funded! Lucky for our pocket it wasn't the lantus! Feel free to PM me if you need more info.
     

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