anyone else have a child with diabetes?

pigpen

If alcoholics and drug addicts can claim DLA so can children with diabetes.. they have needs above and beyond the needs of a non-diabetic child so ignore anyone who says you should not claim.. if the government think your child needs it who is some random naysayer on the internet to comment?

You dont have to consider yourself as having a disability just have an additional need. You dont have to even tell your child you are claiming it on their behalf if you think they are too sensitive to handle the fact you need the extra money to provide the extra or different food and to get them to their appointments.

Diabetes stops you from taking life for granted.. you need medication for life.. the same as someone who has had a transplant or a heart problem or had a stroke.. all of whom are also eligible to claim DLA. Schitzophrenia isnt a 'disability', it is a mental illness but sufferers get DLA.. as do people with depression and loads of other non-disabling disabilities.

Blood monitoring is the easy part.. making sure you have enough food in of a decent quality and quantity is the hard part. Since diagnosis my food bill has increased by over £100 a month and the only difference is having to buy him snacks and different bread and extras I never normally bought, twice as much fruit, stuff which is easy to take to school and quick to eat between afternoon lessons. Checking the blood through the night, treating if necessary, watching for signs of being hypo/hyper, makin sure they dont have a seizure or go in to a coma. A simple tummy bug can land them in hospital seriously ill whereas a non-diabetic is over it in a few hours. If an extra few quid a week is available to provide for the needs of your child with a lifelong disease (if it wasn't classed a disease then they wouldn't be looking for a cure) why would anyone begrudge a child that??? Some of these children are born with T1. Some are just babies and have other issues too such as coeliac disease, autism, heart conditions.

The average life span of someone with T1 is reduced by 23 YEARS.. poorly controlled there is a whole myriad of secondary problems which can occur. Even well controlled a simple illness can become life threatening. On average the chid diabetic is hospitalised once a year, their life span reduced by 23 years, without insulin they die.. quickly.. before insulin the average life span after diagnosis was 11 months! Some jobs are prohibited, forces, pilot, some areas of the police, even bus driving!, if they have a seizure they wont be allowed to drive.. things others take for granted!! Our children are lucky the medical support is there and the parents are lucky the financial support is there if needed.

DS3s diabetes takes more time and money and care than my daughter with cerebral palsy .. and she gets a lot more DLA than he does!

I am assuming OP.. you are the lady whose daughter was dx in Tenerife?

pinkshoes

I've done some work with a couple of diabetic young teens and their injections, and oddly it was the parents that worried SO much more about the diabetes than the child!

Both girls I worked with didn't take long to get used to the injections, and just took the whole diabetes thing in their stride, not letting it interfere with their lives.

The most important things is that they do manage it though. One of my old housemates (when I was 18) was diabetic (had been all her life), and she was fine at managing it until it came to alcohol, where bloodsugar ended up all over the place and she got into trouble far too often! Apparently it's quite common to go through a "denial" phase in the late teens!

Humphrey10

pigpen wrote: »

Blood monitoring is the easy part.. making sure you have enough food in of a decent quality and quantity is the hard part. Since diagnosis my food bill has increased by over £100 a month and the only difference is having to buy him snacks and different bread and extras I never normally bought, twice as much fruit, stuff which is easy to take to school and quick to eat between afternoon lessons. Checking the blood through the night, treating if necessary, watching for signs of being hypo/hyper, makin sure they dont have a seizure or go in to a coma. A simple tummy bug can land them in hospital seriously ill whereas a non-diabetic is over it in a few hours.

(...snip...)
The average life span of someone with T1 is reduced by 23 YEARS.. poorly controlled there is a whole myriad of secondary problems which can occur. Even well controlled a simple illness can become life threatening. On average the chid diabetic is hospitalised once a year,

The first paragraph bears zero relation to my experiences of type 1 diabetes. However I was diagnosed in my twenties, maybe it is different in children.

The 23 years thing is misleading. It may be true for someone dying today, but it is not true for a child being diagnosed today.

Also hospitalised once a year? Diabetes must be very different in children!

mum_of_lewis

Dont post very often but i totally agree with everything you have said pigpen! My son Lewis was diagnosed with type 1 diabetes on the 2nd february last year aged 8. It has totally changed our life.Diabetes in children is a nightmare! cant remember the last time i had a full nights sleep.Lewis has lost his hypo awareness so i need to test during the night.

Would not wish type 1 diabetes on anyone,Lewis now attends a physcologist every 2 weeks due to the fact he hates himself and diabetes.

Janette xx

smellymel222

Hi all

My 4 y/o daughter was diagnosed with type 1 diabetes in october last year. It is very tough but I am really proud how mature and well she is handling it. We have had a couple of occasions were she played up because she didnt want her injections and it is not nice having to inject your child 3 times a day. I suppose at this age she will grow up with it and all her friends will know that she is diabetic and anyway, all think its really cool when she does her blood glucose test in the classroom. I did get really worried when her blood level wasnt right but now think that i cant get it perfect everyday and i must be doing something right as at her last hospital appointment her Hbc1 was 7.2. Ive just applied for DLA as i didnt know about it but will hopefully recieve it as my food bill has gone up and have to turn down extra work as nobody will look after now!
I can imagine it being alot worse for a teenager as they can remember clearly what life was like before dx. What about getting her a book telling diabetes from the point of view from a teenager. I remember there was a book which was written by a teenage girl about living with diabetes but cant remember what it was called. Im sure if you search amazon you would find it.

Person_one

Humphrey10 wrote: »

The 23 years thing is misleading. It may be true for someone dying today, but it is not true for a child being diagnosed today.

The disease hasn't changed, people are dying in their thirties and forties because of diabetes today.

While its a manageable condition and it doesn't need to define you or take over your life completely, I think a lot of people really underestimate diabetes and can be a bit too cavalier about it. I've cared for people with amputated limbs, people who've gone blind, people on dialysis for end stage kidney failure due to diabetes, not old people either. I've cared for people who've had pancreas and kidney transplants as a last resort to save their lives and trust me, you want to avoid that at all costs.

The teenage years are the hardest years for controlling diabetes, and I understand you don't want to scare your daughter too much, but a bit of frightening reality might not be a bad idea. Managing your diabetes is not like eating your greens, or brushing your teeth every day, it can be the difference between a long healthy life and an early death with a wrecked and crumbling body.

Humphrey10

Person_one wrote: »

The disease hasn't changed, people are dying in their thirties and forties because of diabetes today.

The disease hasn't changed, but the treatment has.

Average UK life expectancy is 80, minus 23 years is 57, average age at diagnoses for type 1 diabetes is between 10-14, so someone dying now at 57 having had their life shortened by 23 years due to type 1 diabetes started treatment over 40 years ago. You really cannot compare that to someone starting treatment today.

Also that average life expectancy will take into account children who die of diabetes before being diagnosed, and people who deliberatly overdose on insulin, and children who get given too much insulin, and people who die of hypos, and people who do not treat their diabetes, and people who don't control their blood sugar, and teenage girls who skip their insulin to lose weight, and people with fragile/uncontrollable diabetes.

What we need is a figure for life expectancy for someone diagnosed with type 1 diabetes today, in the UK, who starts treatment before dying, who controls their blood sugar.
Then parents can be told 'if your child takes care of themselves, diabetes will have a minor effect on their life expectancy (8 years is the figure I've seen)', rather than being told 'your child will die 23 years early'.

Person_one

Humphrey10 wrote: »

The disease hasn't changed, but the treatment has.

How? Since synthesised insulin became available nearly 100 years ago, that has been the treatment. The type of insulin used now has been pretty much the same since the 40s, only the delivery methods are changing to make them more convenient, pumps etc.

Have you ever seen a young person blind and disabled and critically ill due to poor management of diabetes? It is NOT to be underestimated or dismissed as minor.

Humphrey10

Safari keeps crashing, lost my post 5 times, really CBA to type it all again. So briefly:

Person_one wrote: »

The type of insulin used now has been pretty much the same since the 40s

Nope.
As well as improved insulins, home blood glucose monitoring possible has improved, so the level of control possible has improved.

Telling people 'you will die 23 years earlier because you have type 1 diabetes, nothing you can do about it' is not true, or helpful.
Saying 'if your control is good, you will die only X years earlier' would be more helpful.

Yes if the OP's child chooses, they can go blind or lose their feet or suffer organ failure. If I choose, I can go blind or lose my feet or suffer organ failure. But it will be a choice, not something inevitable.

mrsBagpuss

If alcoholics and drug addicts can claim DLA so can children with diabetes.. they have needs above and beyond the needs of a non-diabetic child so ignore anyone who says you should not claim.. if the government think your child needs it who is some random naysayer on the internet to comment? :-Pigpen


My point of view was not to think of diabetes as a disability, type one diabetics go on to do all the same marvellous things any "normal" (whatever that is) person can.

I can't say I noticed any increased food bill when my daughter was diagnosed in fact quite the reverse as we cut out junk/biscuits from the houshold budget. In our house we try to eat balanced healthy meals (not goody two shoes, believe me:))

I know this can be an awful and frightening thing, my Mum had most of the frightful things that happen to diabetics.

I view things now that treatment/care has improved although still not as good as it could be, don't know whether it's a postcode lottery for courses but there are only a couple of DAFNE courses per year where we live and getting to attend is a bit like winning the lottery.

I also know that being a parent it is easy to become too focused on the diabetes and lose sight of the person