# Hidden danger



## JFW (Oct 30, 2016)

I have never written anything like this before but have decided to put fingers to the keyboard to warn others about the situation we have found ourselves in.  

Our beautiful daughter was diagnosed type 1 5 and a half years ago at the age of 12.  At the very least it can be described as a traumatic few years with non-compliance, unproductive clinic visits and denial.  With very few readings taken it was impossible for anybody to know what was going on.  Two months ago we started paying the price.  Deeply aching legs turned to excruciating burning pain right to the end of her toes.  Several GP visits (it's viral, it will go away!) later it became obvious this was something else.  Urgent referral to an NHS neurologist (tip: ring twice a day until you get a cancellation otherwise you're waiting approx. 7 weeks) confirmed small-fibre neuropathy brought about through consistently high blood sugar causing nerve damage.

In the meantime GP had tried two medications Amitryptilene and Gabapentin with little success in terms of pain.  Maximum daily dose of Tramadol also being taken, along with paracetemol and ibuprofen.  Told to up the Gabapentin (even though she now only weighs about 43kg) which made her feel so ill we put it down again.  

To date little change in the level of pain especially at night when sleep is almost impossible.  you can only imagine the psychological effects, stress and unhappiness this is causing in the family.

I am proud of my daughter for now recognising her frailties and her determination now to control her diabetes - 10-15 readings through the day and night.  Maybe your clinic is different but for us - THIS WAS NEVER MENTIONED AS A POSSIBILITY - yes, we were told about long-term complications but never in the possible time-span of 5 yrs. and never this unbelievable pain.  Would our daughter have taken it on board had it been mentioned, we'll never know.  But please, if you have a non-compliant teenager read this post out to them.  I do not want anybody else to suffer this horrible condition.

Our hope is that at the age of 17 damage can be halted now and as her body heals the pain will decrease.  We have been told this will take months.


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## HOBIE (Oct 30, 2016)

Welcome JFW.  As a tip from me I drink Diet Tonic Water. Very good for circulation & hydration. High blood sugar is so damaging to cells etc. T1 for more than 50yrs. Good luck& tks


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## Lindarose (Oct 30, 2016)

What a very sad and moving post. You're all going through a terrible time and I truly hope there's some improvement for your daughter soon.


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## grovesy (Oct 30, 2016)

Welcome!


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## Copepod (Oct 30, 2016)

Welcome to the forum JFW. I hope your daughter's pain eases.


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## Flower (Oct 30, 2016)

Hello and welcome JFW 

I'm so sorry to read about your daughter's pain and difficulties with her diabetes. I really hope the treatment and her determination to control things will help her to get to a much better place and relieve the painful symptoms she has.

I was diagnosed at the same age as your daughter but 38 years ago and I went through a similar period of rebellion although at a slightly older age - early 20's. I was told about complications but to a young girl, retinopathy, neuropathy etc meant very little, I couldn't possibly imagine how they could impact on my life. I was young and felt fine and imagined I might have a few small issues- if I was unlucky- in my old age . It is a balance for clinics- especially the paediatric clinics- to make us aware of potential problems and that it doesn't take decades for serious complications to manifest themselves without scaring us to bits  I can recall the change in terms of bluntness of advice when I changed to the adult clinic at 18.

I wish her and yourself well for the best possible outcome and a happy future


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## trophywench (Oct 30, 2016)

Oh I am sorry to hear this tale of woe - unfortunately when we're young we do think that long-term complications will never affect us - after all before I get to anywhere near that age, they'll have found a cure, won't they!  Bit like, I don't need to think about putting any of my earnings into a pension fund ......

One thing I did want to say to try and bring a tiny bit of hope is that when nerves heal - the healing is actually painful - oh boy - is it ever painful!  If you ever had a bit of you that went 'dead' eg sitting with your foot under you for too long - when you realise and move, and it starts to recover - you get pins and needles before they go and your foot's ok again.  Proper neuropathy is exactly the same - so try to concentrate on 'Well if it hurts - there must surely still be some life in it!'

All your daughter can do is grit her teeth and try to control her BGs as well as she possibly can.  And hope.  What help has she had/is she getting with the control?  Has she been on a 'carb counting' course, or been offered a pump?  Could you afford to treat her to an Abbott Libre CGM so she could see more clearly what things are good for her BG and what, not?


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## AndBreathe (Oct 30, 2016)

JFW said:


> I have never written anything like this before but have decided to put fingers to the keyboard to warn others about the situation we have found ourselves in.
> 
> Our beautiful daughter was diagnosed type 1 5 and a half years ago at the age of 12.  At the very least it can be described as a traumatic few years with non-compliance, unproductive clinic visits and denial.  With very few readings taken it was impossible for anybody to know what was going on.  Two months ago we started paying the price.  Deeply aching legs turned to excruciating burning pain right to the end of her toes.  Several GP visits (it's viral, it will go away!) later it became obvious this was something else.  Urgent referral to an NHS neurologist (tip: ring twice a day until you get a cancellation otherwise you're waiting approx. 7 weeks) confirmed small-fibre neuropathy brought about through consistently high blood sugar causing nerve damage.
> 
> ...



JFW - It's shocking to think things can go so wrong so quickly and in one so young.

There is quite a bit on Google, talking about improvement in neuropathy, and indeed Dr Bernstein managed (albeit on his somewhat stark regime)to reverse his own T1 diabetic neuropathy.   I'm not suggesting the approach would be suitable for your daughter, I don't know enough about her or neuropathy, plus of course, it it feels to me that it is important to embed the positive changes your daughter has already made to her approach to diabetes, before potentially consider anything even harder.

I often say that diabetes isn't a solo sport.  Our loved ones are touched too, and they can't even do anything about it.  I wish you all well JFW.


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## stephknits (Oct 30, 2016)

Thank you for you post, very moving and thought provoking and welcome to the forum .   I hope things improve for your daughter soon and we'll done her for turning things around.  Giving information about complications is a very difficult line to tread, not sure how I would have responded as a young girl, would probably have thought the info was not relevant to me, bring so young.


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## KookyCat (Oct 31, 2016)

Welcome aboard JFW.  I'm so sorry to hear your daughter has had such a difficult time, it must be excruciating for you to watch her struggle with all this when she's so young.  It's such a difficult balance with teenagers, it's perfectly natural and normal for them to rebel, but with diabetes the consequences are so much more worrying.  There is a lot of hope there though, I had neuropathy at diagnosis, and I had a very painful 12 months afterwards but it all but reversed itself (just a few minor issues left) so with luck and some good care she might see a massive improvement.  Perhaps some good will come of it though JFW, maybe she'll feel more in control of it all now, because if she can get a handle on it and keep the control, she'll know she can do anything.

Has she considered writing a blog?  Just a thought because there's an age old eternal problem with parents and teenagers, namely that teenagers are programmed to pull away from their parents, it's how they become independent adults.  A blog from one of their own though might just prove to be a lifeline for some of those other young adults struggling with the added weight of diabetes.  It might help her too, just to get some of those feelings out, and get some support from other people her age.

Actually DUK (is Hannah still with us?), why not open a "space" for teenagers in the forum?  I know it's complex because there are safeguarding issues, but it would be so useful for youngsters I think.  It's such an isolating condition at any age but when you're young and just want to be "normal" it must be excruciatingly difficult.  I know teenagers are welcome here but we tend to forget what it's like to be one once we've escaped it.  

JFW I hope your daughter starts to get some relief from the pain soon, and sees an improvement quickly, and I hope she knows that we all do "daft" things when we're young, doesn't make us daft people, or bad people, it just makes us human, and it's what she does now this minute that defines her, not mistakes she may have made in the past.  She's got a battle on her hands no doubt, but it's one worth fighting, and from what you've said I'm sure she's going to throw everything she's got at it.  It's a hard life lesson at 17, and one I wish nobody had to learn, but you tell her from me that's she's a brave, amazing young woman, she's doing something right now that many adults can't manage, she's facing it head on and giving it what for, and that is the best life lesson anyone can ever learn, in my humble opinion.


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## Bloden (Oct 31, 2016)

Welcome to the forum, JFW.

I'm really sorry to hear about your daughter's painful neuropathy and the difficult time your family's going thru.  I really hope things improve for you all a.s.a.p.


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## JFW (Oct 31, 2016)

trophywench said:


> Oh I am sorry to hear this tale of woe - unfortunately when we're young we do think that long-term complications will never affect us - after all before I get to anywhere near that age, they'll have found a cure, won't they!  Bit like, I don't need to think about putting any of my earnings into a pension fund ......
> 
> One thing I did want to say to try and bring a tiny bit of hope is that when nerves heal - the healing is actually painful - oh boy - is it ever painful!  If you ever had a bit of you that went 'dead' eg sitting with your foot under you for too long - when you realise and move, and it starts to recover - you get pins and needles before they go and your foot's ok again.  Proper neuropathy is exactly the same - so try to concentrate on 'Well if it hurts - there must surely still be some life in it!'
> 
> All your daughter can do is grit her teeth and try to control her BGs as well as she possibly can.  And hope.  What help has she had/is she getting with the control?  Has she been on a 'carb counting' course, or been offered a pump?  Could you afford to treat her to an Abbott Libre CGM so she could see more clearly what things are good for her BG and what, not?



Carb-counting is something to be recognised she now realises.  We haven't been on a course but are trying to get to grips with it ourselves.  If we can prove successful at carb-counting there may be a possibility of an Omnipod (the only one she will consider because then she isn't 'attached' to it) but time is running out because it's not one that is offered through the adult service.  The next appointment will be the first transition one.  Her help and support are coming from her family who are with her every step of the way and absolutely desperate for some improvement in her quality of life at the moment.  She is now doing enough readings that we are very aware of when more insulin is needed.  

Thank you for the support - I know I don't know you and we will never meet but it's just good to have somebody to talk to at the moment.


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## Hazel (Oct 31, 2016)

There are regular meets all over the UK.    If you are close to one please do try and come along.    I live close to Glasgow, I have been to Newcastle, York, Manchester, Birmingham, London and Brighton.

It is a superb way to gain knowledge and pass on ideas.

Thete is a meet in London, on the 12th Nov and one in Leeds on the 19th Nov

Maybe meet you one day xx


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## trophywench (Oct 31, 2016)

I was lucky - my DSN (just retired, damn her LOL) was utterly brilliant.  She never ever criticised - she'd look at my readings and enquire 'Ooh - what happened there then?' and I'd tell her I'd most likely cocked it up myself by under/over estimating or forgetting I'd had that mince pie - so a simple, yet another - User Error.  And she'd grin and say 'Well - that probably wasn't the best plan!' and laugh.  She's been married to her T1 husband for over 30 years so she knows EXACTLY what we're like - and doesn't expect us to display exemplary behaviour all the time at all - she knows it just isn't possible - and her former understudy has learned well and is now just as helpful.

I reckon your daughter could do with a DSN like that and I genuinely hope she finds there are some in the adult part of the hospital she's now transitioning to.  I found out - a bit late in my case - that not only God helps those who help themselves as my mum used to tell me - so does the NHS.  If you need something - you need to ASK and tell them WHY.

There's an excellent on-line carb-counting course you could have a go at in the absence of anything formal locally (though if this becomes available to her - I urge her to do it - really really helpful and you get lots of 1 to 1 as well as the classroom type sessions - which are more like a bunch of friends sitting round a table with a cuppa and having a 'structured chat' rather than lessons at school LOL - here, the teacher is or becomes, your mate!

Link to the on-line course - http://www.bertieonline.org.uk/

BERTIE is the course initiated by Bournemouth Diabetes & Endocrine Centre on which most other hospital courses are based if they aren't signed up to DAFNE - and it has been accredited by NICE as meeting every one of their requirements for a T1 Education course, just the same as DAFNE - so it's perfectly fine with ALL consultants and DSNs for their patients to do, if they can't get onto a local one at the moment.


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## Carolg (Nov 1, 2016)

Hello and welcome to forum. Thank you for sharing your story, and very thought provoking. Hope the support you will definitely get here will help you and your daughter through this time.


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## Redkite (Nov 1, 2016)

Sorry to hear this.  Hope your daughter's determination to improve her diabetes control helps heal the nerve damage and ease the pain.


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## JFW (Nov 1, 2016)

trophywench said:


> I was lucky - my DSN (just retired, damn her LOL) was utterly brilliant.  She never ever criticised - she'd look at my readings and enquire 'Ooh - what happened there then?' and I'd tell her I'd most likely cocked it up myself by under/over estimating or forgetting I'd had that mince pie - so a simple, yet another - User Error.  And she'd grin and say 'Well - that probably wasn't the best plan!' and laugh.  She's been married to her T1 husband for over 30 years so she knows EXACTLY what we're like - and doesn't expect us to display exemplary behaviour all the time at all - she knows it just isn't possible - and her former understudy has learned well and is now just as helpful.
> 
> I reckon your daughter could do with a DSN like that and I genuinely hope she finds there are some in the adult part of the hospital she's now transitioning to.  I found out - a bit late in my case - that not only God helps those who help themselves as my mum used to tell me - so does the NHS.  If you need something - you need to ASK and tell them WHY.
> 
> ...



Many thanks - I will definitely look up the on-line course.


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