Desperate for Help

ZoesMum

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13
Hi,

Some of you have very kindly corresponded with my daughter in the past and helped her with many of her issues. Her name on here is Diabetieschild. I figured it was time for me to have my own logon.

She is 14 and was diagnosed with type 1 when she was 9. I am also diabetic, type 2 and have my own issues which I will save for another day!

However Zoe is having a truly terrible time since just before Christmas and I am tearing my hair out. I try hard not to be a neurotic mother but I just dont know what to do for the best any more. I would really appreciate your ideas and suggestions

Zoe has been struggling with the whole hassle of diabetes, not wanting to do her readings etc etc. All of which her care team said was normal behaviour for a teen and would pass. Just before Christmas she got the nasty cold that has been going round and her readings rocketed, with fluctuating ketones. Things got a bit worse so on the holiday Sunday we made a trip to casualty to get her checked over, but by then her reading had dropped from H1 to 5 and they sent us home.

Since she has returned to school her readings are running at over 20 most of the time. Her ketones are fairly high most of the time and of course she is totally miserable. I have been in regular touch with her care team and I am kind of feeling that they think I am over-reacting but things are just not getting better.

Her insulin regime was NovoRapid before each meal - 11 units, 9 units, 11 units, followed by 34 Levermir at night time. These doses have been going up steadily over the last year because of the other struggles we have been having - her HB1ACs have not been good for a year now. On those doses she is hungry the whole time. We do struggle with her diet as she doesnt eat much fruit or vegetables, she is the original carb kid.

Finally on Wednesday they decided that we may be giving her too much Levermir, particularly as she was having an occasional hypo in the middle of the night and we dropped it down to 30 and they told me to use some common sense with the rapid. We are getting a few lower readings but its still not good. Today she was 9 when she woke up, which is a vast improvement on 24, but all afternoon it was between 20 and H1

I really do not know what else to try. I know we have to improve her diet, but shes not really in the right state of mind to start attacking that. I suggested she log on here and talk to you all, but she is so miserable that she doesnt want to do that either.

She looks awful, and is starting to be afraid to eat because she know it will make her high.

A little bit of me feels that I should maybe even cut back on the rapid - it may take a couple of days, but I think all it is doing is making her hungry. Is my instinct right? I think I am going to have to call the team again tomorrow but I thought you are the people that know most about it.

I would be very grateful to hear your thoughts

ZoesMum
 

sugarless sue

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Hi Zoesmum,welcome to the forum,I hope that someone with type 1 knowledge will come along and answer your questions shortly.
 

jopar

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2,222
Two thoughts here..

I'm assuming by what you are saying that the novorapid is a fixed amount of insulin for each main meal! If so carb counting would be a advantage so that she can work out her carb to insulin ratio, and then adjust her insulin each meal to suit...

Another problem could be that she has two very different needs of Levimer to cope with the morning and the night, so to have one injection in the night can cause her to swim in insulin durning the morning, and then if reduced then this meets the morning requirements but not enough to coope with afternoon and evening.. It might be a idea to split the levimer into two, so that you are able to match the different needs better..

These might be a good idea to put these two suggestion not only forward to your daughter and her care team.
 

ZoesMum

Member
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13
I was wondering about splitting the Levermir, it sounds like a really good idea.

Im going to do a bit of research about counting carbs too, it hasnt been something we have been focused on before, but I think we need to understand a bit more about it.

Its funny, even typing it all out above has calmed me somewhat!

I think its terribly easy for us to jump in and over-react and pump extra insulin in when she really doesnt need it.

She was also given Metformin liquid to take but she hates it. But Ive been reading about growth hormones in the teenage years leading to increased insulin resistance. I may try and persuade her to try taking that again for a while, see if it helps.
 

chocoholic

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Messages
831
Hi ZoesMum,
I really feel for you 'cause it's hard enough dealing with diabetes as an adult but to have to deal with it as a parent of a diabetic child must be 10 times harder. I don't really know what advice to give you other than to get in touch with her medical team again. If her readings are in the twenties with ketones, that sounds like your daughter needs help ASAP. Don't be fobbed off by the docs. You are not being an over-anxious mother,you are being a caring one and there is a big difference.
I expect many teenagers struggle to cope with diabetes. Girls having raging hormones to deal with, along with feeling "different" at an age when they want to just "fit in", makes diabetes just an added hassle.
It sounds as though you are doing everything a caring mum can do but please insist on getting the medical help I feel she needs. I think it would also be really useful if there are any other teenage members reading to chat with your daughter, so that she can understand she is not the only youngster trying to cope with the pain in the bum that is known as diabetes.
All the best, chocoholic.
 

ZoesMum

Member
Messages
13
Thanks Choc :)

Im reading all about carb counting now, I think it might help us understand where her high readings are coming from

Its funny, I am well read, and spent hours reading stuff about diabetes when I was diagnosed, and again when Zoe was diagnosed but there is still stuff to learn! Maybe I have been complacent for a while
 

lilibet

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515
Hi Bdec is a good online course - you can sign up for free
Dsolve is a good site, moreso cause katherine, an active forum member, GP and mother of a type 1 son has had a great deal of input

They might help with ideas of dosing and also for carb counting

Best wishes

L
 

fergus

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1,439
Type of diabetes
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I feel for you, Zoesmum.
I was diagnosed with type 1 as a teenager and couldn't really have cared less, as long as I was able to do the things other people my age were doing. She is bound to be in denial to some extent and you are doing all the worrying for her instead. A mother's lot!

She might be able to help herself more if she has the tools to do it. One thing she would benefit from I think is to work out a strategy to inject correction doses when her bs is high. 1 unit of Novorapid will lower her bs by a certain amount, depending on where it is at the time, and she might benefit from knowing this so she can get her bs down to a less harmful level -single figures at least.

Large amounts of insulin will certainly make her hungry, you're right about that, and probably for all the wrong foods - carbohydrates. Would she be prepared to eat foods lower in carbs, such as eggs, meat, fish for example? That would help reduce her appetite and be less inclined to raise her blood sugar too.

Best wishes,

fergus
 

suzi

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Hi Zoesmum,
I can sympathise as i'm a mum of a T1 son who's 10, we've just started the carb counting course and it has opened up a whole new world to us, meal times are no longer the fight and struggle they were before, injecting the right amount of insulin to cover meals eliminates all those highs, as well as correcting any highs he may have had. We're still in the early days of learning and it really is like learning the whole diabetes thing all over again, plus a refresher course.
Things will get better, remember mums are resourceful creatures and youv'e done a great job up until this little stumbling block ( tho i bet sometimes you feel as if your hitting your head against a brick wall, and taking 2 steps forward and 3 back)
It will improve, take care
Suzi x
 

ZoesMum

Member
Messages
13
Thanks everyone. A good nights sleep always helps!

She has got up with a reading of 5.2 this morning, although she still feels rough. I guess the changes we made in her levermir will take a while to take effect too.

We looked at some carb tables this morning and one revelation was fish fingers! She loves them and last night some instinct when she was hungry made me suggest she had some. At 1 carb for 3 they are something she can have if she is hungry, and she almost feels like they are a treat!

We are going to meal plan for the week so that we are all on top of it and hopefully she will start to feel a little better soon

I will let you all know how it goes
 

suzi

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Hi Zoesmum,
Glad things seem brighter this morning, you will get there. You'd never have imagined before how great fish fingers could be :lol: There are lots of low carb snacks out there for those peckish moments, Andrew loves cheesestrings. If you need any help regarding carb counting, i for one am happy to help, as are many others on the forum. Its a whole new learning curve, but its such a healthy one, goodluck to you both and take care
Suzi x
 

ZoesMum

Member
Messages
13
Just thought I would let you all know that we had a long visit with one of Zoe's care team yesterday.

We are cutting right back on the insulin as she thinks that its possible that the high doses might actually be causing "rebound" highs, rather than genuine highs. For me this explanation makes sense with how Zoe has been. But with such huge swings, its no surprise she has been feeling so awful. We are going to monitor the sugar in her urine, which is something we havent done before.

We are going to get her some blood tests to make sure nothing else is wrong - check her thyroid and her iron.

We also talked about relaxing about the whole thing, edging her towards DAFNE while still acknowledging that she needs a good routine.

And...I need to back off a bit and stop giving her such a hard time! She is going to see a counsellor to help her get her head round all of this - talking to someone outside of the family or the team so she learn to cope better herself.

Our lives have revolved around nothing else but diabetes this last three weeks and that puts trememdous pressure on her, and indeed all of us. So today we are going to the cinema together, and having a family afternoon.

Zoe seems much happier and I feel a bit more relaxed.

Thank you all so much for your help and support, Im sure I will be a regular visitor now, and Zoe says she will start logging on and chatting again.
 

suzi

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Hi Zoesmum,
wonderful news, i hope all goes well and i wish you all the luck in the world, it makes a hughe difference when your diabetes team step in and help like they have, things can only get better and they will,
best wishes
Suzi x
 

chocoholic

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Messages
831
That's great news, zoesmum. Getting that "outside" extra help is just what you and your daughter need. All mum's just want to protect their kids and it must be even harder when they have health worries. You are doing a great job though and I'm sure your daughter will soon have the control over her diabetes she needs.
All the best, choccie.
 

Katharine

Well-Known Member
Messages
819
I'm glad things have settled a bit.

Hunger is something that is hard to resist. Would Zoe eat more meat/fish/poultry/eggs/cheese to fill her up?

Have you thought about doing some low carb baking? You can make great muffins and cheesecakes and more for little in the way of carb. They are packed with almonds, whey protein powder, and fat so that hunger is reduced.

My son Steven is 17 in a month's time. I have not had any problems with him at all. I am hell of a lucky.
 

ZoesMum

Member
Messages
13
Zoe would probably be the first to say that she is a terrible eater! Its getting better all the time though.

I love to cook and being diabetic myself am always trying out low carb baking recipes, but although she will try them from time to time, she doesnt really eat much of that.

Still doing much much better today, with a 12 just before dinner - and that was after some popcorn at the cinema as we all went to see a film.

So, we are on the mend :)

She is on the laptop downstairs too, so maybe she will pop in and say hi.
 

diabetesmum

Well-Known Member
Messages
515
Type of diabetes
Type 2
Hi Zoesmum,
I have just spotted this thread. My elder daughter is also 14 and was diagnosed at 8. She was on Levemir and Novorapid until she went on the pump about 18 months ago. She comes on here occasionally, her sign on is Miss Fed-Up (she started the Word Association thread, bless her!).

Anyway I have told her about Zoe and she is quite happy to exchange moans or good ideas/tips or whatever with Zoe if she would like to. They sound like they have a LOT in common to me, Caitlin is entirely capable of completely ignoring her diabetes for days, rarely does BG's, get nagged by me and her Dad to a lesser extent, runs v. high, then low, blah blah blah, you know what I mean! She is also hugely addicted to carbs although I have told her about the benefits of low carbing, but as you say the hunger makes it difficult.

So, I'm going to try and send you a PM with my e-mail addy and if Zoe would like to have an internet buddy, Caitlin would like that too. Let me know........
Sue
 

miss fed up

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Hey Zoe,
Caitlin Here.
How are you?
Heard that you could do with a chat and a good old moan. :D