My daughter is very scared please can anybody advise me

Optom

Newbie
Messages
3
Type of diabetes
Family member
Treatment type
Insulin
On top of everything else she is dealing with, fear and panic must be so overwhelming - my heart goes out to you both. From my own experience of dealing with health issues, I know that the people best placed to offer support are those who are in the same boat as you and your daughter. This forum is an excellent resource, and there will be others out there as well. Please keep us posted about her surgery outcome (my mum-in-law has had a similar op which went very well: she told everyone she was going into hospital for a Vasectomy (as opposed to vitrectomy) which raised a few eyebrows I can tell you!

Hang on in there.
 

smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi myspecialsunflower!

So sorry to hear of your troubles. Diabetes is a very scary condition for all of us, but that must be even more so for your daughter.

I can't help with the specifics, but i can see you're getting good advice from unbeliever who has so much experience with eye troubles. There is a guy on the forum who has lots of experience with aspergers, so i'm hoping he'll come along soon and be able to offer some advice there.

Firstly I would say try not to look back - what is done is done. You have enough stress dealing with the here and now without beating yourselves up over what caused the current situation. Secondly, make sure you look after yourself - you need to be there for your daughter, but you must make sure you keep yourself strong and healthy - physically and emotionally - so how ever hard it is, make sure you have a small amount of time a day when you concentrate on your needs - a bit like putting your own life jacket on before trying to put your daughter's on. Thirdly, ask for support - ring Diabetes UK and ask for their help - they will know what help is available to you in your area. Finally, learn everything you can about how food affects diabetes, because keeping your daughter's BG under control is the best thing you can both do for her future - some complications can be reversed or at least stabilised with good control.

Please take care of yourself.

Smidge
 

LittleWolf

Well-Known Member
Messages
677
Hi there

I also have Aspergers and digestive problems- IBS and damage from bulimia. I am also 20 years old and understand the panic your daughter must be going through. I also express myself visually and rely on visual cues to get around- I get totally lost in my own city even with my sight so I understand her anxiety over being in the dark. On advantage though, being hypersensitive, I hope she won't be overwhelmed by aural information, rather be able to use that Aspie brain to orientate herself through sound.

Does your daughter receive any kind of counselling for her ASD or anxiety? My mother was never very sympathetic of me/medical problems but I can tell you now, you sticking by her is the best thing you could ever do. She seems more cooperative now and it's essential she feels she can tell you anything, even if it's feeling like she did badly managing her diabetes. Acceptance and accepting Help is crucial and whatever comes will be so much easier with you holding her hand. Got to commend you for being strong for her as well as yourself.

I'm sorry I can't offer any real practical input but I hope you and your daughter don't feel you're totally alone in this.

If your daughter is a real visualiser then perhaps you could see if she is interested in cymatics, the science of visualising sound. Perhaps she will take comfort in being able to visualise and make sense/order of the noise around her.

All the best x


Sent from the Diabetes Forum App
 

ConradJ

Well-Known Member
Messages
753
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
The hassle and ignorance of diabetes.
Emotions and words overwhelm me; I am sorry to hear about all you're both going through.

I concur with everything that everyone else has said - and yes, you need support as much as your daughter. Get in touch with the local Brighton group of Diabetes UK; there's likely to be people who will be willing to listen and help point you both in the right direction: http://www.diabetes-brighton.co.uk/blog/

...but do keep posting here as we're a lively bunch who will listen and share hints and tips without prejudice.

You may already know these things, but just in case you aren't, the following sites have food ideas for helping her eyes - they won't cure things, but eating healthily will help her body cleanse, strengthen and repair itself (to some degree)... such foods will also help with improving her BG levels, general health, etc.:

http://www.health.com/health/gallery/0,,20680738,00.html
http://www.rnib.org.uk/eyehealth/lookingafteryoureyes/Pages/nutrition.aspx

With very best wishes,
Conrad
 

paul-1976

Well-Known Member
Messages
1,695
Type of diabetes
Type 2
Treatment type
Insulin
Dislikes
Dishonesty
Hi there!

I can't help with the eyesight issue but I have Asperger syndrome too as well as Type 1 diabetes,crohns disease and have endured 2 operations for colon cancer and as an aspie I have found it all extremely frightening as health care professionals do not always be 100% clear with all the details and do not always stick to previously agreed treatment plans which is a big NO for me and I imagine for other Aspies as 'If's and maybe's' do not bode well with me..I NEED the facts and I need to see them in black and white,exactly how they are as my thought process doesn't allow for grey areas at all and any treatment plan agreed MUST be stuck to and I would say that ALL doctors involved NEED to be fully aware of what ASD's are all about and give your daughter 100% of the information,100% of the time and if they agree to a plan they MUST stick to it.

Depression and Aspergers go hand in hand in my experience and myself,my wife and our children(who also have ASD's) are isolated from family and don't have any friend support but I have found the national autistic society useful in my area as they have support for families and also through them I have met up with local aspies for face to face meetings and I've found that very useful in sharing our experiences in life and realising how much we have in common,here's a link

http://www.autism.org.uk/living-with-au ... arers.aspx


My best wishes to you and your daughter

Paul
 

SamJB

Well-Known Member
Messages
1,857
Type of diabetes
Type 1
Treatment type
Pump
What an awful situation, I really feel for your daughter - sounds terrifying. Regarding gaining good control, there a some rules that I follow.

Testing
The most important part of control. Test before and after every meal, before bed and upon waking. Keep a record of this. If you need diaries, ring this number (Novo Nordisk - they make Novorapid) and they will send some to you: 0845 600 5055.

Basal dose
Also known as long acting, it's the 24 hour insulin that covers your insuln needs between meals and overnight. I use Lantus as my basal insulin and it looks like your daughter uses Levermir. It's very important that this dose is correct, without it being correct, it is very difficult to get the correct fast-acting dose without the basal being correct and her numbers will be all over the place. The way to tell is by not eating, or injecting short acting insulin at least 4 hours before bed. Then, compare the before bed test and the upon waking test. If there is a difference of more than 1.6 mmol/l, then the basal is incorrect. For each change of 1.6 mmol/l you will need to adjust the basal by 10% accordingly.

Fast-Acting dose
I use Novorapid for my fast acting insulin, this is given to cover meals. As others have mentioned, 1 unit of fast acting insulin per 10g of carbs is a good place to start.

Diet
Diet is the greatest thing that will affect sugar levels, in particular carbohydrates. If your daughter reduces the amount of carbs that she eats then she won't go as high. I don't know how reducing your daughter's carbs will affect her gastro-illness, so you will need to look into it. If all is ok on that front, then I'd suggest that cutting her carbs will make the most dramatic improvement in her sugar levels. I don't eat bread, pasta, rice, potato etc and that is how I got rid of my background retinopathy and got my HbA1c down to 6.1%. There's a low carb section on this forum, if you are interested, then there are loads of good ideas on there. But, be careful about any dramatic, sudden drops in overall blood sugar control as this will make retinopathy worse. So perhaps aim to get her insulin dose correct before aiming for radical changes in diet.

Exercise
Regular exercise gives more consistent readings and reduces the amount of insulin required. Smaller doses of insulin means that you will have smaller mistakes, both high and low. I don't know if your daughter manages to do any exercise given her complications, but I'd suggest she didn't do any for the time being as it will disrupt the calculation of basal and fast-acting insulin.

As mentioned, don't aim for a dramatic increase in good control as this will make the retinopathy worse. Her consultant will advise an HbA1c to aim for.

This forum is full of experienced, well-controlled diabetics, who in my opinion are the best resource for gaining good control. Please, please post her daily test readings and diet on here as we will be able to help.
 

the_anticarb

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1,045
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Spiders, winter, bills, ignorance, prejudice
Just wanted to say I am really sorry for what your daughter is going through. Diabetes is a *****, especially if you get it young and I don't know many who go through the teenage years without rebelling. Who wants to be different when you're young, you just want to fit in and all the problems and complications seem so far away as to be non-existent. It is so easy with this illness to believe you will continue to be ok and not to bother with the boring routine of self management, particularly when you are young.
I had vitro retinal surgery last year, at the time I was so afraid that I was going blind but the surgeon sorted out my retina completely I have a little residual peripheral damage in the corner of one eye, which is permanent, but I can't tell with both eyes open and it has stabilised now thank god. There is a lot the eye surgeons can do. I don't know much about other complications but I know with retinopathy there is a lot they can do before vision is permanently affected.
 

Hazyeaahh

Newbie
Messages
1
Hey, After Reading All Of These Comments And The Original Post, I Can't Offer Much Advice.
I'm A Type 1 Diabetic, Aged 22. I Went Through A Similar Stage As Your Daughter With Not Wanting To Do My Injections And Just Wanting To Fit In And After A Few Week Long Stints In A Hospital Bed Unable To Leave The Bed I Managed To Start Making A Bit More Of An Effort To Sort My Life Out, 3 Years Later And My HbA1C Is Finally Coming Down.
As I Said I Cannot Offer Much Advice But I Can Offer Someone To Talk To As I Find It Very Easy To Make Friends And Get Along With People, So If Your Daughter Wants Anyone To Talk To, Just To Moan To And Unload I'm Here :)
I Have Skype If It Is Easier For Her To Speak That Way With Her Eyesight Not Being So Great, That Maybe Easier Than Typing. You're Welcome To Contact Me On Here And I Will Give You Any Contact Information You Would Like. I Have Most Forms Of Social Networking Going :)
Thinking Of You Both, And Really Hoping That Things Will Get Better For You Both Especially As She Seems To Have Been Making A Real Effort To Control Her Diabetes More Now.
 

forty six

Well-Known Member
Messages
74
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hi there,

I am very sorry to hear about your daughters situation and it is good that you have a supportive GP - they are like gold dust! My question is - are you both receiving some sort of support or assistance from Adult Social Care (Brighton and Hove Council). I would hope that your GP has made a referral for you or advised you to do so yourself. It is vital that your daughter is 'on their radar' so to speak. Just as importantly, it is vital that you get the level of support you so desperately need.

My heart goes out to you - it must be devastating as she is so young and I agree with you on the issue of medication. Having watched medical professionals over medicate my father for the last 15 years of his life I really can understand where you are coming from.

XX
 

suewho

Member
Messages
16
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
spiders,
Hi Sunflower, I'm so, so sorry to hear what a rough time your both having. No medical advice I'm afraid. All you can do is to push as hard as you can to get her up the priority list to see the specialists she needs including a dietician, psycologist and anyone else who can help. Don't give up, I'm sure somewhere out there is someone who can help. Good luck with the surgery. Big hugs to you both.