Author Topic: Help needed - out of control  (Read 1864 times)

0 Members and 1 Guest are viewing this topic.

Offline karenr

  • New Member
  • Posts: 3
Help needed - out of control
« on: 09 October 2013, 03:15:05 AM »
My 13 year old daughter was diagnosed with type 1 diabetes in April this year - her control early on was fairly good with a couple of hypo's to teach us the way, but now 6 months later everything is out of control and even the diabetic team are pulling their hair out!

J's blood sugars are just all over the place - we use lantus - 30 units at night and novarapid on a 5 carbs to 1 unit ratio with a correction dose of 1 unit of insulin (novarapid)  1 unit above a reading of 10 blood sugar which is doubled with keytones of over 1.  We have been in hospital for 3 weeks and discharged on Friday after repeatedly being hooked up to the sliding scale and going into DKA twice.  Since Friday, we are correcting every two hours with huge doses of insulin as BM's are registering as HI and keytones fluctuate.  The corrections will either reduce the keytones for a short period of time but mainly reduce the BM for a short period of time and within 2 hours have once again risen :banghead:.  All equipment and reading devices together with the insulin have been replace in case of faulty batches, techniques for injecting have been checked - but nothing seems to be getting her condition under control.  Can anyone offer some advice - Hospital have done every blood test under the sun to see if there is an underlying condition, but nothing has been out of the ordinary. The team and the consultant have run out of ideas and we end up yoyoing in and out of hospital resulting in a daughter who is unable to go to school and mum unable to work. 

Offline Dollyrocker

  • Member
  • Posts: 922
Re: Help needed - out of control
« Reply #1 on: 09 October 2013, 10:39:57 AM »
Oh gosh, that sounds awful, that's a lot of insulin that she is taking. What is she eating at the moment? Would you be able to minimise carbs in order to avoid any drastic rises? Were her blood sugars controllable in hospital? I'm wondering if you have a bad batch of insulin at home perhaps (clutching at straws)

Has anyone suggested that a pump might help? It sounds like she would be a prime candidate though it normally takes time to get one.


7/2014 7.2 (55) / 4/2015 7.3 (56) 1/2016 7.0 (53)
pumping with a shitty Accu Chek Insight

Offline Pattidevans

  • Administrator
  • Posts: 23,657
  • It's ONLY Diabetes. It could be something worse!
Re: Help needed - out of control
« Reply #2 on: 09 October 2013, 11:47:35 AM »
Hi Karen and welcome to the forum

As Dolly mentioned, that's a lot of insulin for a 13 year old girl.  She's on the same meal ratios and more basal than I am (and I am a sedentary, slightly overweight 60 odd year old).  It's a bit off the wall, but some people just don't get on with Lantus, it seems to do nothing at all for them.  You could ask if she can try Levemir as a basal insulin - I have seen people go from appalling control with Lantus and suddenly everything works properly when they switch to Levemir (and vice versa).

I'd certainly second the idea of an insulin pump.  They are brilliant for children and young teenagers - it takes a bit of work to get them to optimum doses etc, but it's well worth it.

Talk to your team about the idea.  Please let us know how you get on.  I do feel so for kids who have D.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Cora

  • Member
  • Posts: 60
Re: Help needed - out of control
« Reply #3 on: 09 October 2013, 06:48:40 PM »
When I was a teenager, my insulin requirements went through the roof. It was probably both growth and female hormones going on. The good news was that by the time I was through puberty, only during my periods were my insulin requirements much higher, and that settled when I was in my 20s too. Because of both body changes and a lot of emotions going on (remember back to when you were a teenaged girl and everything was so earth shattering and dramatic?) she is bound to be on a lot of insulin. It's hard to require a lot of insulin. At that age you tend to think you are getting "worse" and the docs tend to treat you that way too.

Sorry I can't offer any advice - Nph and R (in those days known in Canada as "Toronto") were the norm and 100 unit insulin hadnt' even been introduced yet. But the good news is that things will settle, so don't be afraid to hammer down the sugar levels. You can always "treat" if she goes low. Remember, there is no "bad" or "right" amount of insulin. Only the amount that works for her.

Diagnosed type 1 1966
Dialysis 2001
Kidney transpant 2002
Pancreas transplant 2008

Offline karenr

  • New Member
  • Posts: 3
Re: Help needed - out of control
« Reply #4 on: 09 October 2013, 07:50:31 PM »
Thank you for your kind support.  Jess ended up back in hospital again today and back on the sliding scale as keytones hit the 7 mark.  The diabetes team have decided - as some of you suggested - to change the Lantus as it really does not appear to be working when it should.  New regime starts tomorrow so fingers crossed this will work as Jess has been in and out of hospital now for what is approaching her 4th week and getting very fed up.  For info her diet is two pieces of toast in the morning, a round of sandwiches at lunch with a piece of fruit and an evening meal with option of a packet of crisps when starving or the usual non carb food like ham, chicken, carrots, salad etc as snacks. Periods haven't started yet so have that to look forward to mixing everything up again at some point!

Again thanks ever so much for the support, will talk to the team at the hospital in the morning with regards to the pump idea and hopefully life can get back to some normality.

Much love

Karen

Offline Pattidevans

  • Administrator
  • Posts: 23,657
  • It's ONLY Diabetes. It could be something worse!
Re: Help needed - out of control
« Reply #5 on: 09 October 2013, 08:39:34 PM »
Hi Karen

Oh poor Jess!  It must be a nightmare for both of you.  I hope the new insulin regime works.  Is it Levemir they are putting her on?

Sorry, I never thought about teenagers needing so much insulin.  I was diagnosed as an adult, but of course from time to time they will have growth spurts and insulin needs will shoot up.

Please let us know how you go on tomorrow.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline sedge

  • Global Moderator
  • Posts: 13,788
Re: Help needed - out of control
« Reply #6 on: 09 October 2013, 09:23:29 PM »
Other growth hormones have an effect for kids, until they've stopped growing.  I'm not exactly sure when they top though, grandson's nearly 18 now and I don't think he has yet.  Always seems taller every time we see him.

Suggestion, have you tried looking at  http://www.childrenwithdiabetesuk.org/  this is the UK bit of the dot com organisation.  A lot of parents find it brilliant and there's a wealth of info on there, it's a mailing list rather than a forum like this.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline nytquill17

  • Global Moderator
  • Posts: 6,466
  • It's all in the balance.
Re: Help needed - out of control
« Reply #7 on: 10 October 2013, 03:29:13 AM »
Yep, growth hormones do a number on control as well as puberty hormones. Gosh, what an awful time you're having. My sympathies!

When I was her age I got into what my endo termed a vicious circle. She described it as "you eat more because you're hungry, and then you take more insulin because you're eating more. Taking more insulin makes you more hungry, so you eat more, so you take more insulin, and so on." They admitted me for a few days so they could oversee me "walking down" my food and insulin amounts.

It doesn't sound like she's actually eating a lot, but I do notice a lot of carb foods mentioned, if she's started gravitating towards them more than she used to it might be a sign of her feeling hungry and looking for an energy source.

Are they able to achieve any kind of control while she's in the hospital or are they just stabilising her enough to go home?
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline Liam

  • Global Moderator
  • Posts: 3,032
  • We live to fight another day.
Re: Help needed - out of control
« Reply #8 on: 10 October 2013, 06:34:16 AM »
I think my mum must have been much like you and pulling her hair out when I hit my teens. Everything changed and would change almost daily for me. I gave up but my mum never did and I'll always be thankful for that even if I hated it at the time. Trying Levemir is a good idea imo Sounds like she needs more basal all round, but fairly hard to be sure.
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline everydayupsanddowns

  • Administrator
  • Posts: 2,325
    • Every day ups and downs - a diabetes blog
Re: Help needed - out of control
« Reply #9 on: 10 October 2013, 09:24:40 AM »
Can't add much to what has been suggested already - pump and alternative basal certainly worth trying/asking about.

Guessing you are keeping an eye on sites etc? (making sure insulin isn't getting 'lost'. FWIW I heard over the weekend that some of the pharmacological studies on insulin doses (particularly larger single doses) can have a 30% absorption variation. So 20u might come out as 14u one day and 20u the next :eek:. Wonder if it might it be worth trying larger doses in 2x small parts just a few moments apart?

Hope you manage to make some progress soon.
Mike

Type 1 since: 1991 Last HBA1c: 45 (6.3%)  Total Chol 5.0 (1.9HDL / 2.8LDL / Trigs 0.7)
Pumping NovoRapid in a MiniMed 640G
Blogging at: www.everydayupsanddowns.co.uk

Offline Liam

  • Global Moderator
  • Posts: 3,032
  • We live to fight another day.
Re: Help needed - out of control
« Reply #10 on: 10 October 2013, 09:56:41 AM »
Good point Mike. Silting big dose was something I learnt here and is something I 'just do' now. I mean fast acting insulin (bolus / Novorapid) not basal (Lantus / levemir are the basal ones)
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline karenr

  • New Member
  • Posts: 3
Re: Help needed - out of control
« Reply #11 on: 11 October 2013, 07:54:24 PM »
Hi guys - out of hospital now and home again - and much relieved.  The lantas has been replaced with Levemir and already what a difference - absolutely no highs recorded  but in fact a couple of low's so already ratio's have had to change from 1 unit - 5 carbs to 1 unit - 10 carbs. 

I think Jess has been in her honeymoon period up until now so it hasn't been obvious that the Lantus hasn't worked - resulting in the diabetic team increasing dose after dose until nothing seems to be working and now we have changed to Levemir, I think we may end up reducing dose after dose.

Can't tell you what a difference this has had already with Jessie's energy levels being up - not drinking all the time and popping off to the loo every 5 minutes.

Thank you all once again for your ideas and wonderful support.  I really was at my wits end the other evening when posting this on line and your support has really been invaluable.

With love ...... Karen xxx

Offline Pattidevans

  • Administrator
  • Posts: 23,657
  • It's ONLY Diabetes. It could be something worse!
Re: Help needed - out of control
« Reply #12 on: 11 October 2013, 09:44:03 PM »
OMG!   I'm so pleased honey that things seem better for Jess!

Looks like Levemir is helping
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline everydayupsanddowns

  • Administrator
  • Posts: 2,325
    • Every day ups and downs - a diabetes blog
Re: Help needed - out of control
« Reply #13 on: 11 October 2013, 10:43:49 PM »
Great to hear Levemir looks like it's working well for you (and J!). Don't be afraid to make smaller tweaks to ratios. 1:6 or 1:7 might seem a bit daunting, but they are dead easy if your phone has a calculator, or if you can get hold of an Expert meter or Insulinx that will work out the doses for you :)
Mike

Type 1 since: 1991 Last HBA1c: 45 (6.3%)  Total Chol 5.0 (1.9HDL / 2.8LDL / Trigs 0.7)
Pumping NovoRapid in a MiniMed 640G
Blogging at: www.everydayupsanddowns.co.uk

Offline Pattidevans

  • Administrator
  • Posts: 23,657
  • It's ONLY Diabetes. It could be something worse!
Re: Help needed - out of control
« Reply #14 on: 12 October 2013, 06:56:39 PM »
Abbot are still giving away the Insulinx meter - you can get one here https://www.abbottdiabetescare.co.uk/your-products/freestyle-insulinx/request-meter

As far as I know, Roche will also supply a free "Expert" meter.  They were handing them out like sweeties last Saturday at the INPUT pump event.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans