From Lauderhil, Florida, USA:
My daughter was diagnosed at age 11. It was a very difficult time for us in many ways. I was newly divorced, lost my mother (whom my daughter adored), then she was diagnosed with type 1 diabetes. She was non-compliant from the very beginning and has been in a coma three times, most recently in September 2007. The first was after she ran away from home without her insulin and was found by passersby who called 911. My baby was 99 pounds and had a blood sugar of 1263 mg/dl [70.2 mmol/L]. Her current endocrinologist said she was going to die! She beat the odds and survived, but it's been a constant battle. Sometimes she handles the diabetes well, then, she doesn't. We wanted to get her on a pump, but her endocrinologist said she has to have three steady months of good readings before. How? Now, he said he wont see her unless he's had 30 days of steady correct readings. I've met someone who told me about your site who said that the pump is/can be given to help regulate. Is this so? I would like to get her on a pump if it'll help. We discussed it and she is receptive. She's currently in the hospital, just got out of PICU (July 13, 2008), moved to pediatrics. She was diagnosed with a large ovarian cyst, severe pain, sugars over 700 mg/dl [38.9 mmol/L], ketones to the maximum, went into DKA. She is very sad! I'm sure I must be doing something wrong somehow, too. What do I need to change or stop doing? I'm at a loss. We need to change the way things are being done to break this vicious cycle. I don't think her body can take too much more. Can you either help and/or steer us in a better direction?
My friend told me about the Orlando Conference, but only two weeks ago. It sounds wonderful, but being a single parent, my funds are limited right now and we can't afford to go; God willing, next year! Any guidance you can give would be greatly appreciated.
My reply will be brief. Please do not misinterpret it to be unsympathetic.
An insulin pump is A LOT of work. Please see the many, many questions to this web site about Insulin Pumps and our section on Insulin Pump Therapy. Please do not get the false idea that an insulin pump is "an artificial pancreas" that allows the person with diabetes mellitus to eat whatever and whenever they want.
With your daughter in such terrible glycemic control, it would seem that she is not testing enough. An insulin pump requires a routine of daily testing, too, for optimal care -- perhaps six to 10 times daily.
I think that your efforts will be better directed if you will accomplish the following:
- YOU (or other responsible adult) should take over your daughter's diabetes: YOU should be in charge of checking her blood glucose before meals and at bedtime and at any other time directed by her physicians. YOU should check her for urine ketones or blood ketones (a special meter and strip would be required - ask her physicians) when her glucose is over 240 mg/dl [13.3 mmol/L]. YOU should be drawing up the insulin and providing the insulin shots.
- Please seek out counseling for your daughter. Based on your letter, she has a lot of issues including, but not limited to, denial and depression regarding her diagnosis of diabetes. Assuming your daughter is not learning disabled, she has learned - at least from experience now - that lack of insulin will lead to severe illness that could lead to death. Her past exploits, which have caused her to "be in a coma" three times and/or other episodes of DKA, translate to me as attempts at self-harm.
- Please brush up on your knowledge of DKA. One does not go from "doing well" to "DKA" in a flash. There are almost ALWAYS clues, including higher glucose readings and the presence of ketones. If you wait until the glucose is in the 700s mg/dl [over 78.9 mmol/L] and the ketones are already large, you are already behind the game. This is why YOU (or another responsible ADULT) should be in charge of her daily diabetes care and not leave the care to your daughter, who has shown that she can't be reliable in this regard yet.
Another idea, depending upon whether you have the resources, you might look into a residential treatment facility such as the Cumberland Hospital for Children & Adolescents in New Kent, Virginia.
Additional comments from Debbie Butler, MSW, LICSW, Licensed Clinical Social Worker:This sounds like a very difficult situation. I know the pump can sound like a magical cure, but the pump requires a lot of hard work and effort. If a person were going to go on the pump they would need to be willing to check their blood sugars frequently and consistently each day, practice advanced carbohydrate counting and remember to give insulin every time they eat. I worry that since your daughter is struggling with her diabetes now, she may not be able to put in all of the effort that is involved for a more complicated regimen, like insulin pump therapy. I think the insulin pump is a great piece of technology, but sometimes I tell families that are struggling with their current diabetes management plan to work towards the pump as a long term goal versus a short term goal. In the meantime, will your daughter let you help her with as many diabetes tasks as possible? Will she let you give her all of her insulin injections and check her blood sugars? Also, I worry when you said that her doctor will not see your daughter unless she has 30 days of consistent blood sugar readings. Is there a doctor that she could meet with regardless of whether she has 30 days of consistent blood sugar readings?
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