At my wits end

[slurp]

Youd think i would of joined a forum like this years ago. But i didnt.

Im a single parent with 4 kids. One a 15 yr old female diabetic type 1, one other, an 11 yr old autistic girl with the mind of a toddler and in nappies 24/7 due to a mega colon, another a 13 yr old grunting lad and the last a 9 yr old going on 26.

My eldest daughter, Vicky.. was diagnosed when she was 11, it will be 4 years tomorrow from when she was first diagnosed and ended up in hospital for a week. Ever since, she has been unstable, can be non compliant, will refuse to take insulin, will refuse to do checks and not let me do it, her last background check was 11, She has nearly died twice through DKA, been admitted to hospital several times for it.. she has been admitted before for non compliance, been admitted because her numbers were out of control for some reason even when ive taken over doing her checks and administering insulin. She is on novarapid and levamir. She has in total 45 units of slow acting a day split into two doses. She was last admitted on christmas day and its looking like she will be in again today. Waiting to her from the registrar at the hospital. Blood sugars 8.8, ketones 4.6.

Please excuse my babbling, waffling, probably horrendous spelling mistakes but its all coming out now.

My daughter is in the TAC system which i hate as each time i go to a meeting im told im neglecting my daughters physical, emotional and mental health, Ive had social services on my back several times thanks to our diabetic nurse putting in a referral each time my daughter has been admitted, citing neglect from me , each time social services find no case after going round and speaking to each of my other kids in school time.
Our nurse will no longer deal with me, only my daughter in school time as i refuse to put my eldest on a pedastal and devote all my time and attention to her. My autistic daughter is also aggressive and will attack my son, only my son. When i was told that even if my autistic daughter was attacking my son, i had to leave them be and deal with my daughter, i cant do that!! my son has gone to school covered in scratches, bite marks, wounds where shes thrown things at him.. i cant do anything right in the TAC teams eyes. Ive been told i have to send her to school evne if she is ill for them to decide if she can work or not. Her attendance at school is 74%. I have the education welfare officer breathing down my neck, im worn down with constantly having to defend my actions, my decisions on what i do with each one of my kids. If vicky has sickness and the runs, i still have to send her to school so she can work in isolation, if i do not i get an ediucation officer on my doorstep asking why she isnt at school. im worn out from all this battling to keep my family together, keeping my daughter well when she will not do as she is supposed to yet she knows everything she is supposed to do. Our team will not put her on a pump yet im told she is a prime candate for it by one doctor during one admission.
She is a bright smart girl, but nothing i say gets through to her, ive been threatened with her being taken off me if i dont get her numbers sorted out. How please?? how can i do that when she can refuse and i can then do nothing?? Her team class her as unstable, both in managing her diabeties and mentally because she knows what she should do but does not.

I am tired, feel like my family is falling apart as when my daughter goes HI, she is awfull, her mouth is foul, the things she says hurts like telling my autistic daughter she was a freak, shouldnt of been born, should of been aborted.. telling my youngest she wished my youngest was dead.. telling me she wished i was dead, wasnt her mum...

ack, ive rambled.im ever so sorry. Just got the call, ive to take her in.

Thanks for reading this.

One worn out Maz.

 

[Spearmint]

Oh Maz, i really feel for you hun [hugs]

I can sort of understand how you feel as i am a single mum too, no family around to help, friends don't understand.
I have 3 girls and it is my middle one who is diabetic, she is coming up to 13, does her blood tests and insulin when told but if not told she forgets! She has also taken to secretly binge eating lately so if her levels are out i never know if it is that or something else, very frustrating and stressful.
Sounds like you are dealing with a lot worse though.

 

[slurp]

Sat at my daughters bedside in hospital at the
Moment. Halfway to getting here she got worse
So I pulled over and called for an ambulance.
On a drip, awake now, just had a small bite to
Eat and two doctors arguing over whether she
Needs to stay in or not.
My daughter also binges on food. I have had
To put a lock on my kitchen door to stop her raiding
At night.
Looks like she will be discharged in a couple of
Hours!
It is hard work. The nurses here are brilliant though.
I feel brain dead at the moment.

 

[MissFortune]

I can't offer any advice from personal experience but do you think she enjoys the attention she receives from you ? I know it sounds very moderm but it could be a cry for help.
Is the father still around? Or his family?
It sounds like you need a break and outside help rather than being blamed and left to deal with so much.
Her age is tricky because she is still a child but old enough to refuse her meds without you being able to do much.
I hope someone offers you a solution. Take care.

 

[slurp]

Still sat here. Last blood sugar was 16.2.
Attention. I do believe she uses her diabetes
To get attention. Her dad lives down in Kent
And hasn't been around much since she was
5. He saws her every three months as he works
Abroad. But she has admitted to being jealous
Of any attention her siblings get. I have tried to
Explain to her that I just cannot give her the 100%
Attention that she seems to want from me.
She is involved with a lady attached to the diabetic
Team that she can talk to. But after 3 years we
Are no further forward.
No decision yet as to what is happening and
I've got my other two younger daughters here with me.
Hannah my autistic daughter is now starting to get antsy
As she is usually in bed by half six.

 

[elainechi]

sorry you.re having such a **** time....see if she will go to 2 injections a day like novomix30.....helps with the ketones problems but does been watching the carbs..my daughter sneaks foods and alsorts.....has tac meetings and waiting for counselling for my daughter as still in denial......its so so hard for all the family.......accept all the help going even if been tried before.....oh and ask for time out for yourself too xxxxxx

 

[Spearmint]

My daughter also binges on food. I have had
To put a lock on my kitchen door to stop her raiding
At night.

I feel brain dead at the moment.

I took lots of things out of the cupboards and have hidden them in my bedroom!

I can sympathise with the brain dead feeling, my daughter has had a cold since Thurs night so i have been getting up to test and correct every 2 hours at night ever since.
It is hard work and i'm not looking forward to her getting older.

 

[Spearmint]

Still sat here. Last blood sugar was 16.2.
Attention. I do believe she uses her diabetes
To get attention. Her dad lives down in Kent
But she has admitted to being jealous
Of any attention her siblings get. I have tried to
Explain to her that I just cannot give her the 100%
Attention that she seems to want from me.
No decision yet as to what is happening and
I've got my other two younger daughters here with me.
Hannah my autistic daughter is now starting to get antsy
As she is usually in bed by half six.

Good to see her levels coming down, how are her ketones now?
What county do you live in?
It is hard to give every child the time they want when you are on your own and must be harder for you with their wide range of needs.
Poor Hannah, it is tough having to drag other children to hospitals.
I hope they decide what they are doing with Vicky soon.

 

[slurp]

They finally discharged Vicky late last night as they needed the bed space. They sent her home with a ketone reading of 3.8, blood sugars of 18.3. But they said as she was not in DKA she could go. Called it starvation ketones. Said also with her being sick that made them go up. Her blood sugars were Hi this morning even though I gave her the correct amount of insulin and her ketones were 4.2. I've got her numbers down to 9.1 at the last check and her ketones were 1.5.
It was hard on all of us last night, I didn't sleep much last night, haven't done so for a while. I'm under the doc myself for sleeping and kidney problems.
If you get a good TAC team then they can be a great help, mine unfortunately are not. The only good thing that has come out of it is family action, the lady involved with us is a godsend. Being a single parent herself and with her knowing our family as she was involved with us 3 years ago for my youngest when she was ruling the house, she knows us all quite well and when doing work with the kids will send me out for a walk fir some space for me.
But I have lost faith in our diabetic team, lost faith in the TAC team, I get it from both camps and I am sure my daughters last two stays in hospital will be brought up and myself given the blame as always. They expect me to do what they cannot do themselves, get my daughter to take her insulin when she refuses. As they say, I am the parent, she is the child and should do as I say as I am the one with control!!!!!! .
Speaking to a nurse last night, this time of year they always see an influx of diabetic kids through their doors.
Anyway, Vicky is home, till next time. They even joked last night that she should have a plaque above the bed saying it was hers as she always seems to end up in the same bay and bed.
I'm in the UK.
Thanks all of you for your replies

 

[elainechi]

excuse me but as a parent there is a limit to what you can do with a teenager....i keep getting told that by my team....no her team!!!!!. are you in touch with the SEN coordinator at the school as diabetics are under them...the tac team are suppose to help the child....took me a while to say why you lot ganging upbon me....you want me to drag her to school...that appears ok in their eyes...injecting insulin however is assault and im not allowed to do that......and all the time i look at the team mostly overwait women...why are they overweight...can.t THEY control the simple idea of controlling what they eat?????? but they want my child to control her diabetes.hmmmmm xx

 

[slurp]

The senco is the lead professional of the TAC team and she is the one with our diabetic nurse's support and the school nurses, who has stipulated that I have to send my daughter to school even if I'll unless she is in hospital. The senco has before now, quizzed my daughter on how I was coping at home and if she knew if I was on any medication for my own problems. They also performed a pregnancy test on my daughter at school without my knowledge, only telling me afterwards as my daughter had asked what would happen if she got pregnant.
For the last 4 years I've had to battle with this team. My doc says I suffer from stress, it's not something I've told my team as I believe they will use it against me like they did when I was out on medication that caused me insomnia so I was then prescribed sleeping tablets. My daughter let it slip and the TAC team in their wisdom then put a referral into children's services as they felt my insomnia was caused by me not coping. The amount of times I have come out of this meetings feeling drained and emotionally battered are too many to count.
I know I can't force insulin on my daughter, I could be arrested if I did and she called the police on me. With me doing her insulin and checks keeping them right she is ok, she doesn't think straight when her numbers go off and it's then she will refuse. Or if for some reason she has gone off on one.
She is in year 11 at school, I've told her she is throwing her future away by doing what she does, and sometimes when she is screaming obscenities and hurtfull things at me.... I find it so very hard to have any sympathy for her. There is no medicine to help my other daughter who will always need support, never be able to live on her own, may always have the mind of a much younger person... Yet Vicky has medicine and can choose not to take it and potentially, cause long term health problems. She doesn't see any of this when I say to her what she could have, but Hannah never will. It's heartbreaking.

 

[Pourmonfils]

Hi Maz,

Really sorry to hear about your situation, I really hope all goes well this year. Wishing you and your family the best for 2013!xx

 

[JanieMc]

It's no wonder you're at your wits end. You have the sympathy of every reader here I'm sure. I have no advice for you, only little random bits of info. I've been diabetic since 1975. In those days you couldn't take your glucose reading quickly. Insulin was also horribly slow. During my childhood, because of lack of balance, I was also threatened with being taken into care. My mum challenged the hospitals specialist diabetic knowledge and they backed down. You have the power to do this too. You can demand that they give you training to find your daughters carbohydrate to insulin ratio - it's different for everyone. Without this there is no realistic chance of achieving good control. Also I can tell you as a senior teacher of 23 years in a high school, SENCOs have the most ridiculously limited knowledge of diabetic care imaginable. They are in touch with the diabetic care nurse yes and therefore links to the authorities but universally, the school care plans are woefully outdated and again could be easily challenged. they are exactly the same as the one put in place by my own school as a teenager. New diabetic care follows the DAFNE rules. If the authorities start on you go for their throats- challenge their own knowledge. Find out the DAFNE principles on line and show that they ( the sch authorities) are lacking. That's one thing you CAN do. As far as a pump is concerned, the doc is right in some ways that the lack of glucose balance is usually a qualifier. However poor funding for them means that generally they are only given to those who really try to keep themselves balanced but have some reason for not being able to do this just by injecting. I've got a pump but only because of problems with my basal insulin. I hope I'm wrong but I think you're unlikely to qualify for one until your daughter shows some responsibility for her own life. Finally, your daughter WILL suffer in later life. Complications will follow. Because of poor control in the 70's I have some circulatory issues, including retinopathy. However, since the DAFNE training ( mine through my care team in b'ham) I have literally halted the damage and even displayed signs of regeneration. I'm unaffected by complications now, on an every day basis, so I've been very lucky. There are many who have had amputations after this time. So, my point here is - your daughter needs to grow out of her teenage rebelliousness and stop dumping on her poor mother. No one can do that for her. She needs to accept her condition and stop fighting it . All the attention is great, but it brings physical and emotional consequences on her and you that she will regret. In the mean time, be more forgiving of yourself. You're stretched too thinly here. You cannot fix your daughter neither can the authorities. She needs more education about her diabetes and you need the authorities off your back. Remember, all is not lost- this is just a terrible time and there is also much physical regeneration that can take place if she does do damage. I wish you and your kids the best and hope you don't feel too alone x

 

[slurp]

Many thanks for the replies. I've been doing a lot of research this morning and made several phone calls. What sparked me off was DAFNE. I had never heard of it so dad a lot of research on the net what it was. I have found out that my trust does not do it and in order for my daughter to be able to do either the Kick off or DAFNE corse, we will have to change hospitals for her care. From what I have read, my daughter would benefit greatly by doing the course. I also now believe, every trust should have a unit!!.
Ive found out a lot today that I never knew before , discovered how varied diabetic care is done in different hospitals.
Started writing this reply yesterday but had to stop as I became unwell. Acute pain in my neck and ear.
My daughter has now joined this forum which I am really pleased about. I'm hoping that by reading she will maybe accept her diabetes more.
I've got some emails I need to send out today and I will keep you all updated as to how it all works out.
Many thanks
Maz

 

[pumppimp]

Hi Maz,
That's really great that your daughter has joined the forum as well hopefully it will help her, to talk to people who have been, and are going through some of the same stuff she is. Your sounding a lot more positive today which is always good to hear. Dafne is an excellent course and I think everyone at diagnosis should go through the same training. It doesn't nesscecarily have to be exactly DAFNE though at the hospital I got my pump at they sent the dsn and dietician to one with the first couple of people that got pumps they then all came back from the course and made up their own version which they have rolled out to quite a few people on pumps now. I can't tell the difference from talking to people who have done proper dafne and what I was taught. Now that I've gone through uni and can link all the biology up it's very much common sense what is taught. If you keep looking on the internet and on the info pages here you could probably teach yourself the vast majority of things some other people have reccomended different books if you look on the insulin pump forum and the type 1 forum there are 3 or 4 mentioned I think.
I was writing you out a big long email last night but my internet froze so i lost it all so I'll keep it short and sweet. I'm writing from the position of not being a parent but someone who's got type 1 and has had some issues that then effected how they behaved with their diabetes. I see that your daughter is going to therapy which is great but the specific type that helped me was intensive cognetive behaviour therapy. I only happened to get it because it was part of a study and the girl giving it was writing a paper and I was an interesting case for her. So I never put myself up for it but it did end up changing my life. It let me see how all my feelings and emotions where interconnected with everything I did and that I was in charge of it and with some practice could change how I was feeling into something more positive. I did wonders for how I controled myself but also in the other areas of my life as well like school etc. it wasn't until I was doing what i was supposed to that i realised I had very brittle diabetes and the contol instead of getting better with age just got worse and worse until I got my pump. Which has also changed my life. Unfortunately they aren't freely available and your daughter would have to show a lot of effort to improve her control to be considered for one.
If you can change doctors/ hospitals to get much needed better support I would it makes all the difference to be supported and listened to instead of being put under the microscope. I managed to change consultants in the same hospital which was like turning on a light bulb with the amount of help and support I got compared to the other and especially compared to what I've got at present. So if changing hospitals isn't possible maybe changing consultants is.
I hope some of that helps. Laura

 

[JanieMc]

Hi Maz, I've since spoken to my friend who is an ed social worker. Her advice is as follows: because of high profile cases like Baby P and Victoria Clombie ( there should be an accent on that e) the authorities have to cover their backs. They must tick every box going to show that they have done their utmost for the child. Therefore, do not fight them, ask them to work with you. Get THEM to find you the DAFNE training. Ask THEM to help you or either of your daughters with respite etc. it puts YOU in the driving seat and makes you the responsible parent that they can then work with (I'm not at all suggesting that you weren't before, I'm just trying to find a path for you here) expect them to maybe be a bit pants.. Not everyone does their job effectively. Still research how you can become DAFNE aware. It would be a slap in the eye for them if you could show better knowledge and the strong desire for this for your daughter. My friend says "they will not go away" their own jobs are on the line if they are negligent so work with them not resisting but you still have the power to be one step ahead of them. The best of luck lovely x

 

[Spearmint]

Many thanks for the replies. I've been doing a lot of research this morning and made several phone calls. What sparked me off was DAFNE. I had never heard of it so dad a lot of research on the net what it was. I have found out that my trust does not do it and in order for my daughter to be able to do either the Kick off or DAFNE corse, we will have to change hospitals for her care. From what I have read, my daughter would benefit greatly by doing the course. I also now believe, every trust should have a unit!!.

Many thanks
Maz

Maz, how are things now?

My hospital won't run any sort of course for children or their parents/carers.
I found out from this forum that there is an online carb counting and dose adjustment course devised by Bournemouth Hospital which i registered for and completed, i found it a brilliant help!

http://www.bdec-e-learning.com/

 

[bigbenn]

Hi,
You have not said if the Diabetics in your family are Type 1 or Type 2. Living in Aussie, we probably have a different way of describing Diabetes and dealing with it.

If your family are Type 2, being overweight, might have something to do with the Diabetes.

I feel for you. I have always thought that children have enough to cope with, just with growing up, without having to deal with Diabetes and its effects as well.

I have Diabetes, but I have it under strict control and I don't eat fat, sugar or salt and my diet helps me lose weight automatically, so that for the past 2 years I have had a Diabetes reading of 6.1 - which is considered to be normal, here - I'm 66 and I don't want Diabetes complications, for the rest of whatever life I have remaining and I will do whatever I have to do to achieve that.

I suggest you read this article and pay particular attention to the last paragraph and follow the links there to an eating regime, which should help you and your children handle Diabetes much more efficiently and with a more positive result: http://www.phlaunt.com/diabetes/14046739.php

If you want my diet send me an e-mail asking for it: [email protected]

BigBenn

 

[donnellysdogs]

Have sent you a pm...