Sons bloods out of control for 12 months and no answers

[Kajkam]

Have been looking everywhere for someone going through what we're going through. 15yr old daughter, diagnosed at 12yrs. Control not too bad until beginning of this year then admitted with high BS and ketones. Change from Levemir to Lantus. Three weeks of pretty OK readings then overnight BS went through the roof. Admitted again, change back to Levemir (split dose) that was two weeks ago and there has been no change. We rarely get below 20 and are frequently looking at HI on the meter despite the consultant raising units. TDD is currently 96 so we are almost at 2 x body weight. Told this isn't good but not given any more advice. Where do we go from here. I get really angry when people suggest it may be the way they are injecting. These people have been injecting themselves for 2 and a half years and know what they are doing.

Currently 28u Lantus overnight which can sometimes drop it 20mm/ol and sometimes 4! We seem to have lost all consistency and carb-counting isn't helping because it seems to make very little difference what she eats and how much. Readings climb steadily throughout the day.

Running out of questions to ask DN and consultant because I keep getting the answer 'this shouldn't be happening'. Any advice or help would be appreciated.

 

[Paul McKenna]

Sometimes consultants and nurses go by the text book, it doesn't work that way, I have been diabetic 22 years, in my teens they blamed pure orange juice and eggs. It is more than probably a hormone inbalance, usually associated with teens. An alternative is an insulin pump, which steadily gives an amount of insulin 24/7.

Cheers, Paul.

 

[darceeday]

Have been looking everywhere for someone going through what we're going through. 15yr old daughter, diagnosed at 12yrs. Control not too bad until beginning of this year then admitted with high BS and ketones. Change from Levemir to Lantus. Three weeks of pretty OK readings then overnight BS went through the roof. Admitted again, change back to Levemir (split dose) that was two weeks ago and there has been no change. We rarely get below 20 and are frequently looking at HI on the meter despite the consultant raising units. TDD is currently 96 so we are almost at 2 x body weight. Told this isn't good but not given any more advice. Where do we go from here. I get really angry when people suggest it may be the way they are injecting. These people have been injecting themselves for 2 and a half years and know what they are doing.

Currently 28u Lantus overnight which can sometimes drop it 20mm/ol and sometimes 4! We seem to have lost all consistency and carb-counting isn't helping because it seems to make very little difference what she eats and how much. Readings climb steadily throughout the day.

Running out of questions to ask DN and consultant because I keep getting the answer 'this shouldn't be happening'. Any advice or help would be appreciated.

Hi Kajkam so sorry to here what you are going through. I was having problems at the other end of the scale with my 14 year old daughter who's blood would just drop for no reason during the night they too changed her from Levemir to lantus after 2 weeks and 2 ambulance trips to hospital because of seizures she was taken back off it again. To say I lost it with her consultant at this point is possible an understatement they were spending more time trying to blame her convinced that she must be doing something as they didn’t have an answer, and if I here the statement “I have never seen this before” I am going to scream. I demanded that she be taken off all long acting analog insulin as I believed that this is where her problems lay, and in a fit of anger they agreed. For 4 weeks I worked with just nova rapid injections every 4 hours. What a difference bloods almost normal 24 hours a day it was not a long term measure but enough to prove my point that this is her problem. At the moment they have her on humalin s, humilan M3 and nova rapid, it has only been 4 weeks bit she has grown, lost a bit of weight has more energy, bloods stable most of the time runnig a wee bit high now and again just running eg 9-11 so still a bit of tweeking to do but no hypos. I don’t know if this will help for you but I did ask around before going down the long acting analog insulin route and there were quiet a few who were like your daughter with hight BS. It Might be worth a try ask to be put on synthetic insulin rather than the analog to see if it makes any difference. It is still early days with us but for the moment we are getting somewhere.

 

[Nickybee]

Have been looking everywhere for someone going through what we're going through. 15yr old daughter, diagnosed at 12yrs. Control not too bad until beginning of this year then admitted with high BS and ketones. Change from Levemir to Lantus. Three weeks of pretty OK readings then overnight BS went through the roof. Admitted again, change back to Levemir (split dose) that was two weeks ago and there has been no change. We rarely get below 20 and are frequently looking at HI on the meter despite the consultant raising units. TDD is currently 96 so we are almost at 2 x body weight. Told this isn't good but not given any more advice. Where do we go from here. I get really angry when people suggest it may be the way they are injecting. These people have been injecting themselves for 2 and a half years and know what they are doing.

Currently 28u Lantus overnight which can sometimes drop it 20mm/ol and sometimes 4! We seem to have lost all consistency and carb-counting isn't helping because it seems to make very little difference what she eats and how much. Readings climb steadily throughout the day.

Running out of questions to ask DN and consultant because I keep getting the answer 'this shouldn't be happening'. Any advice or help would be appreciated.

Hi really sorry been off line for a while as recently been very tough Jack has been getting worse and rushed in with boarder line DKA on occasions they changed him to Levimer which we got a couple of ok days but then bgs back through roof and constant ketones, he is starting to look poorly he has lost that much weight but don't know what to do. Team have asked Manchester children's hospital to do a 7 day cgm test but no idea how long before we get that. How's your daughter doing, have there been any changes?