Warning to other parents on Medtronic pumps

[PopsMum]

My daughter was diagnosed with type 1 at 6. She had 3 years of quite good control on a pump. We were changed to a 670g with guardian sensor 2 years ago. Since then her control has been terrible (Hba1c 100+) At every appointment we have been blamed for this. She has been sent to psychologists. I have stopped school lunches and taken food off her. It has caused rows with her dad. She is now in tears when we get a hospital appointment letter and I dread the appointments. I asked and asked and complained for help but was told I couldn’t change anything before 3 years.
Over Easter I bought a dexacom and set every alarm possible. I weighed every scrap of food and woke 6 times a night to bolus her. The trace shows she spent huge chunks of every night with BMs over 22 and even with multiple boluses she was only briefly touching BMs of 11. We tried changing sensors/ insulin/ pump leads.
Eventually we phoned Medtronic and asked if the pump could be checked. They surprisingly readily offered to send a new pump. Within 30 minutes of changing the pump she is in range 78% of the time (and most of the rest is hypos because the pump settings are set so aggressively) compared to 8% before the change.
I feel completely disgusted with myself that I let my daughter down. I followed the plan of blaming her for this. I can’t believe I didn’t think of this before but you read all the stuff about diabetes in teens. I am really angry with my diabetic team who didn’t listen when I told them she wasn’t eating at night. We were warned by the consultant that the first 10 years of control are the most Important for complications so this could have long term consequences.
I post to warn other parents that pumps are not infallible but certainly our diabetic team consider them so.

 

[Satan’s little helper]

My daughter was diagnosed with type 1 at 6. She had 3 years of quite good control on a pump. We were changed to a 670g with guardian sensor 2 years ago. Since then her control has been terrible (Hba1c 100+) At every appointment we have been blamed for this. She has been sent to psychologists. I have stopped school lunches and taken food off her. It has caused rows with her dad. She is now in tears when we get a hospital appointment letter and I dread the appointments. I asked and asked and complained for help but was told I couldn’t change anything before 3 years.
Over Easter I bought a dexacom and set every alarm possible. I weighed every scrap of food and woke 6 times a night to bolus her. The trace shows she spent huge chunks of every night with BMs over 22 and even with multiple boluses she was only briefly touching BMs of 11. We tried changing sensors/ insulin/ pump leads.
Eventually we phoned Medtronic and asked if the pump could be checked. They surprisingly readily offered to send a new pump. Within 30 minutes of changing the pump she is in range 78% of the time (and most of the rest is hypos because the pump settings are set so aggressively) compared to 8% before the change.
I feel completely disgusted with myself that I let my daughter down. I followed the plan of blaming her for this. I can’t believe I didn’t think of this before but you read all the stuff about diabetes in teens. I am really angry with my **** diabetic team who didn’t listen when I told them she wasn’t eating at night. We were warned by the consultant that the first 10 years of control are the most Important for complications so this could have long term consequences.
I post to warn other parents that pumps are not infallible but certainly our diabetic team consider them so.

Hello,

Don’t beat yourself up.

I have a colleague with a new DX’d 3 year old. He approached me at work quite pensive one day.
The child was prescribed a Dexcom. He said it took ages for the clinic to find a nurse who knew how it worked.
The Dexcom was reading consistently low for hours in the 3s. But the BGs on the meter were in the 20s.
I saw a screenshot of the kid’s graph. Looks like 8 hours at a consistent 3.4mmol.
This caused a bit of a row. The child’s mum knew this was not right & go with the finger prick results. The nurses were telling her not to test & go with the Dexcom??

The nurse had fitted & advised them to fit the sensor to the kids bottom??

I was flabbergasted I not only felt sorry for the kid having to put up with high BGs & falsly treated for hypos.
But the parents too. It must have been stressful at home for the bloke if he wanted to talk to me. He’s normally quiet?

You are not alone..

 

[Inka]

@PopsMum Don’t blame yourself. Even the specialists didn’t realise there was a pump issue. Thank you for highlighting this for others. I hope your daughter is feeling happier and better in herself now xx

 

[Pumper_Sue]

@PopsMum as others have said don't beat yourself up over it.
Do complain to the so called diabetes team for their lack of knowledge and care. Either they or Medtronic should have sent you warning letters about certain pumps with delivery issues. I know I had them via my DSN and also by Medtronic and the pumps were changed/recalled.

 

[everydayupsanddowns]

Sorry to hear you’ve had such a rough time @PopsMum

Thank goodness you’ve managed to get it sorted at last.

Do be kind to yourself - kids are incredibly resilient, and many who have gone ‘off the rails’ making very unwise choices at the same stage have escaped with few apparent long-term consequences.

Try not to worry about that, you’ve done amazingly to get the TIR back on track and that’s the main thing.