From Argyll and Bute, Scotland, United Kingdom:
Our 13 year old daughter, who has had type 1 diabetes since age six, was well controlled until the last two years. In the last two years, she has barely been able to attend school, and she has all the symptoms of a person with undiagnosed diabetes. Her blood sugars rise and drop for no apparent reason and she smells of ketones. She is in and out of the hospital weekly and sent home as soon as stabilized with no answers as to why this is occurring. She becomes physically ill carrying around a bucket. She has never been able to identify hypo's.
Our daughter has been in the best children's hospitals in Scotland and England, and we are desperate to find a solution to these uncontrollable rises and falls before her major organs give out, if they aren't already damaged. We have requested an appointment at a major center in Boston, Massachusetts, USA and are waiting for a reply. Please help us!
The situation that you describe with recurrent episodes of totally out of control glucose values is extremely difficult. The most important piece of information, which is not provided in your query, is: Does this same situation occur in the hospital under direct staff observation? The most common cause for labile or brittle diabetes is omitted insulin. Major psychological disturbances often are the underlying culprit and a need to be in control when someone is severely angry, depressed, has been abused physical and/or sexually sometimes presents with such frightening and recurring episodes of diabetes being out of control. However, under staff supervision, this does not take place so that the episodes rarely occur in the hospital, but only when outside of the hospital environment. Detailed psychosocial evaluation is needed to make this diagnosis since it is often hard to believe that a person would harm themselves in this fashion.
Occasionally, there are some direct immunologic problems where insulin is bound or unbound erratically so that the effect of insulin cannot be reliable. In such instances, often intravenous insulin works fine, but subcutaneous insulin does not.
If you have gone to several Scottish and British pediatric diabetes specialists and nobody can determine a cause, then it may be worthwhile to set up a conference telephone call with all the specialists talking with your primary care physician so that everyone's thoughts can be coordinated before you go traveling around the world only to find out the correct diagnosis has already been made closer to home. There are excellent pediatric diabetes specialists in Dundee, Glasgow, Sheffield, London and Leicester as well as many other places in the UK who should be able to provide assistance.
Keep an open mind to what they are saying even if it is difficult to understand. As parents, you will likely need some support to deal with these circumstances since they involve difficult discussions. Similarly, for your child.
Original posting 30 May 2001
Posted to Hyperglycemia and DKA
Last Updated: Tuesday April 06, 2010 15:09:22
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