I know -A day in the life of a parent of a Type1 child.

[jo78]

Hi just wondering how long your daughter had symptoms for as i am worried about my little girl. She is 2 1/2 she is drinking upto 6 litres a day soaking through every nappie eating more i wouldnt say she is losing weight but woukd say she isnt really putting on for what she eats. Had urine tested but no sugars in it ..... just wondered if this could still be diabetes i have been fobbed off by doctors x

If she's had her urine tested, it's unlikely to be diabetes. When the Doctor test's the urine, they are looking for ketones in the urine. In diabetes mellitus the urine burns the skin and this doesn't heal until insulin treatment.
Please continue seeing your doctor and make sure you get to the bottom of it. Urine stick's can go out of date very quickly, your concerns should be commended because many Doctors miss the symptoms. My daughter had been sent away many times, but thankfully the urine test did confirm.
Hope this helps
Jo

 

[LSPAngel2000]

This forum has been such a much needed emotional help for me as a mum of a type 1 teenager. Have not had any support emotionally before discovering diabetes.co.uk. Thank you.

 

[TanyaEmily]

Try also kids with diabetes it is american but very alive

 

[Pinkjessi21_]

You're an amazing mummy and you're doing a wonderful job. Well done!

 

[helly1974]

A day in the life of a parent of a type 1 child.

"I know"


Since the diagnosis of type 1 diabetes in my 2.5 year old beautiful daughter 4 months ago, I wonder where are the support articles telling all the amazing parents the ups and downs of dealing with this disease 24/7 and how well they are all doing.
I see nothing so I am writing this as "I know" so many can relate and find this as a support knowing they are not alone.

First of all I want to say how highly underestimated diabetes is to live with even for an adult let alone a toddler. It's not just "have a chocolate bar and you will be alright"

Don't get me wrong of course I find some comfort that my daughters disease can be controlled and there is medication for it and she is not terminally ill and can still live her normal life. Yes this I am very grateful for.

We live each day as it comes right now and try not to put high expectations on ourselves. control still has to be good, you see there are consequences if they are not controlled and not just from Low sugars (hypos) but also something I never knew was that there are long term harsh consequences from having high blood sugars (hypers) and these hypers bring pure spouts of guilt when you see it on your glucose monitor.
"What have I done wrong, was her meal to big, was it the pasta, was it not enough insulin, do I need to change my carb to insulin ratios?????"
This can cross your mind in a matter of seconds which will then lead to a mathematical process in your mind where you can get lost for a good 20mins or longer if you were to let yourself.
Truth is we all do our best we can only learn from our mistakes and be better the next day.

To begin with I would dread waking every morning to the new routine where I would have to wake my baby up and upset her as she was due her first of 4 injections at 8am and sugar test which she found all so unbearable and so did I.
We have turned that corner now and she hands me her finger sometimes while watching the TV! Something I never thought I would see! never thought I'd be so happy that my daughter is ignoring me!

The sleepless nights are difficult and something that most people are unaware you have to deal with, checking blood sugars at 10pm and at 3/4am and then finding she has soaked her nappy through to the bed clothes as she has been going to bed high sugars.
On the flip side you are worried that there is not enough sugar in little ones body and that she will have a hypo that you are oblivious to in the night.
Least we have the finger pricking now down to a quick in and out now while she stays sleeping most of the time, again another step taken in the right direction.

Starting school is a big one that weighs heavy on my mind. So after taken a lot of time calculating how much insulin to give for every meal to the carbohydrate and assessing my child for any symptoms of hypos can I really trust some one else to calculate this dose correctly, administer it and to treat and spot my daughter low blood sugars.
My saving grace is my daughters strength will get me through this more than anything, to see her just get on with it and live her life as she knows as normal is inspirational.


I want to give all the parents dealing with this a huge hug and want to say "I know"
I know this is not everything and there is even more to it.
I know you are coping so well, simply because you have to.
I know how you think and grieve at night time,
I know this is normal.
I know you just want your child to fit in and not feel deprived.
I know you feel you have been given a crash course in diabetes, child psychology, nutrition, food glycemic index and carb counting.
I know as a parent you will do anything for your child.
I know this will get easier.

Keep strong

.My daughter was diagnosed in 2003 she was 2.5 years and was diagnosed with Coeliac Disease 2 weeks later... it was as if our whole world had fell apart and you've described all the fears and anxieties that you go through spot on, ...My daughter is now 17 Years old and is a wonderful independent strong girl she makes me immensely proud of how she deals with everything....children are so resilient...you will get through it and it will get easier x

 

[TanyaEmily]

My daughter was diagnosed at 20 months old, now she is "a big 4" and it does not get easier, we just learned to live with it, we just do not take failures too close, BUT IT IS NOT EASIER. She can only be controlled with pump and continuous glucose monitor, she can only go to nursery because we bought 4G and i can watch her rises and falls on my phone. I still feel like i do not do enough, but what i totally agree with, it is a fight worth fighting, for the little brave ones!

 

[Cotcha]

@Gemmablower your post brings up some important points, especially for me. My son was diagnosed when he was 4 years old many years ago. His ability to accept with very little complaints his situation is astounding (of course, it's pretty much all he's ever know). But one thing which really infuriates me is the the general lack of knowledge, both at the personal and medical level, concerning the overwhelming sacrifices that need to be made to allow our son to live the same life as any other 11 year old. The amount of times I've heard 'no more cake for him then' as if having Type 1 diabetes is like some Hollywood dieting fad. The care needed for our son to be at the level we deem necessary takes vast amounts of time, sacrifice and punishment. Either those close to us feel it is nothing different than not eating sweets or they are so fearful of his care that they hide away. As such, there is my wife and me and no one else. It is exhausting (even if you just consider the nights) and has pretty much meant that we have had to have one of us always out of work (fortunately I am a researcher and have flexible work hours). The reason for this is that we firmly believe that his illness is our illness until he is ready to take it on board. He's 11 years old and like most 11 year olds 5 minutes is no different than 5 hours. That's the beauty of childhood, it sets it's own limits and works with it's own time. Diabetes does not. To force on him the responsibility for his own care before it has any benefit for him would strip all that away from him.

I thank you @Gemmablower for your post. I think it is essential that we do not hide away from the fact that to look after a child with Type 1 is nothing short of shattering. Of course, diabetes varies from one person to another, not to mention social situations or personal believes about care. But for a large portion of people, they put their own lives on pause so that their child can live on fast forward.

 

[Livi4]

Such a beautiful post!! I am a mum to Newley diagnosed 4 year old girl six months ago!! I initially struggled to come to terms with it all and still at times look at my sweet and innocent girl and wonder why!!! However, she is coping amazingly and she just now gets on with it, She is such an inspiration, the constant checks, carb counting, sleepless nights are difficult but like any other parent I do it as she is my baby who's life at this present moment does rely on me, so I will always do my utmost best xx

 

[Gemmablower]

@Gemmablower your post brings up some important points, especially for me. My son was diagnosed when he was 4 years old many years ago. His ability to accept with very little complaints his situation is astounding (of course, it's pretty much all he's ever know). But one thing which really infuriates me is the the general lack of knowledge, both at the personal and medical level, concerning the overwhelming sacrifices that need to be made to allow our son to live the same life as any other 11 year old. The amount of times I've heard 'no more cake for him then' as if having Type 1 diabetes is like some Hollywood dieting fad. The care needed for our son to be at the level we deem necessary takes vast amounts of time, sacrifice and punishment. Either those close to us feel it is nothing different than not eating sweets or they are so fearful of his care that they hide away. As such, there is my wife and me and no one else. It is exhausting (even if you just consider the nights) and has pretty much meant that we have had to have one of us always out of work (fortunately I am a researcher and have flexible work hours). The reason for this is that we firmly believe that his illness is our illness until he is ready to take it on board. He's 11 years old and like most 11 year olds 5 minutes is no different than 5 hours. That's the beauty of childhood, it sets it's own limits and works with it's own time. Diabetes does not. To force on him the responsibility for his own care before it has any benefit for him would strip all that away from him.

I thank you @Gemmablower for your post. I think it is essential that we do not hide away from the fact that to look after a child with Type 1 is nothing short of shattering. Of course, diabetes varies from one person to another, not to mention social situations or personal believes about care. But for a large portion of people, they put their own lives on pause so that their child can live on fast forward.

I agree. i am still learning even now. I'm always adapting and always guided by my daughter and I have learned that's the best way we cope between us. Xxx

 

[fletchweb]

A day in the life of a parent of a type 1 child.
My saving grace is my daughters strength will get me through this more than anything, to see her just get on with it and live her life as she knows as normal is inspirational.
I want to give all the parents dealing with this a huge hug and want to say "I know"

Keep strong

Hi @Gemmablower,, I have a lot of respect and admiration for my parents as I was diagnosed in 1966 and my parents were clueless as to what to do. There wasn't a whole lot of information back in those days. The times I would wake up in the middle night yelling and screaming because I was having a hypo, the times I would scoop up spare change and go to the store to buy a snack without my parents knowledge and the times I would just take off for the day to have fun - they must have been nervous wrecks. When my kids were born I was hoping like hell they wouldn't be diagnosed with diabetes - fortunately they are both in their 20s now.

Coming from the perspective of a Type 1 - I don't know how parents do it.

 

[Missbee100]

What a heartfelt post to read.
Parents take on all the responsibiltys and feelings that adult responsible T1's feel and it is absolutely heartbreaking to read of so many postings nowadays from parents especially that their children under 5 years of age sre being diagnosed.

I help a very dear friend of a child using a pump and realise more how hormones and puberty as teenagers can also throw levels out.

On the positive for all parents. My dad when I was disgnosed 30+ years ago promised me there would be a cure in my lifetime. Although that hasn't been realised yet there are huge improvements, research and hope that has happened in the last few years mainly. So hold on to that hope.

My 9 year old son is 1 week into his diagnosis,
After a very traumatic weekend and him falling into a coma we then found out he had type 1 diabtetes, shocked wasn't the word, what you have written has resonated with me and made me cry, I thought it was just me that went to bed and cried. My son is now out of hospital and doing amazingly well, even injecting himself.
Dare I say that it's me, his mum that is struggling to come to terms with his diagnosis.....
Feelings of guilt, anger, sadness I'm having it all, it feels so good to know that I am not going through this alone.
I hope your daughter is doing well.....

 

[EddiesMummy28]

My 2.5 son was diagnosed 3 weeks ago. It has been a whirlwind time of numbers facts figures, but mostly guilt.
Am i doing it right? Am i hindering the numbers rather than helping? As a family we are exhausted. @Gemmablower to read your post is a big light bulb moment for me. I know we are not alone as parents but sometimes it certainly feels like it. To read such similarities and realise what we are going through is normal and ok has really made me happy!
Thank you

 

[Rox000]

my daughter too diagnosed 6 weeks ago...she has autism and is non verbal so i honestly felt things couldnt get any worse for me as her carer. She never complains about her many daily bsl tests injections and her change of diet but i worry about her future with t1 diabetes. My family are complacent ...i dont want to be ...how will she get an eye test if she is non verbal？ As a nurse ive seen the outcome of what poorly controlled diabetes can do...but i just cant help worry about her future

 

[mmariyamm]

To all parents of type 1 kids .. watever and however ur dealing with ur kid ... it is just NOT possible tht u arent doing a gud job .. guilt is understandable but i rather tht my 5 year old has some illness tht i can atleast hope to manage in order to mk his lyf better .. i just cant imagine the mental anguish ,hopelessness and helplessness tht parents of kids with lethal diseases face .. may all kids with type1 and their parents be able to defeat their hurdles ..

 

[Jaysmum]

Hi my eldest child who is 12 has just been diagnosed with type 1 diabetes and after being in hospital for a week since the diagnosis we were discharged yesterday and are on day one of being at home and the beginning of our new lifestyle of several blood sugars and insulin’s etc daily for the rest of his life now. I have two other children, also boys, one aged 8, and baby is 6months so I know it’s not going to be an easy ride. I have been all over the place with emotions and it is so overwhelming and so much to take in. Surprisingly I can’t believe how well my son is dealing with it but I can’t lie I’m being real strong as this is out life now but I’m so heartbroken and frightened by it all if I’m totally honest and just reaching out as some advise and support from other parents of children with type 1 diabetes I think will be a great thing for me. Thanks, Charlotte x

 

[vicki.milne]

Hi my eldest child who is 12 has just been diagnosed with type 1 diabetes and after being in hospital for a week since the diagnosis we were discharged yesterday and are on day one of being at home and the beginning of our new lifestyle of several blood sugars and insulin’s etc daily for the rest of his life now. I have two other children, also boys, one aged 8, and baby is 6months so I know it’s not going to be an easy ride. I have been all over the place with emotions and it is so overwhelming and so much to take in. Surprisingly I can’t believe how well my son is dealing with it but I can’t lie I’m being real strong as this is out life now but I’m so heartbroken and frightened by it all if I’m totally honest and just reaching out as some advise and support from other parents of children with type 1 diabetes I think will be a great thing for me. Thanks, Charlotte x

Hi Charlotte, so sorry to hear that you've had to find your way here.
I think all I can say is that things do become easier with time.
All the testing and checking and carb counting all become routine and part of the whole family's every day life.
My type 1 son is now 14 and was diagnosed when he was 10.
We still have good days and bad days and for me, the sadness of the diagnosis has never gone away.
But the strength and resilience of my son always brings me back into focus. It sounds like your son is also doing incredibly well and being very brave and that will go a long way into helping the whole family accept the changes a T1 diagnosis brings.
The key is to be kind to yourself. Do what you can but don't beat yourself up about any of it. It is hard but I've heard so many parents of T1 kids say that if it hadn't been for the diagnosis, they would have never known how strong and brave their little ones are.
I remember how difficult and sad things are at the beginning so please come here to chat, let off steam or get advice whenever you need to.
Take care,
Vicki

 

[Jaysmum]

Thankyou soooo much it’s such a shock and the night times are also a big worry right now aswel

 

[vicki.milne]

Thankyou soooo much it’s such a shock and the night times are also a big worry right now aswel

One nurse described the diagnosis as being like a grief.
It does feel very much like a grieving process you have to go through.

Yes night-times can feel very scary at the beginning.
I don't know if it's like this for everyone, but we've kind of got used to recognising what my son's levels will do at night now.
So we know that if he's played sport during the day, he's likely to drop down and so we can feed him up before bed time.
Also if he's eaten something fatty for dinner, the carbs are likely to kick in later so his levels are likely to go up.
Some kids also have good hypo awareness and may even wake up themselves if their levels start to drop.
A Freestyle Libre is a God-send too for checking on levels at night. Some authorities offer it on the NHS, others don't though unfortunately.

The worry does begin to ease once patterns start to set in but it does feel very random at the beginning.
Just give yourself time. I can absolutely promise you that it will get much easier.

Btw, that's a beautiful photo Charlotte

 

[Jaysmum]

Thanku so much for that
Very uplifting for me for sure

 

[TanyaEmily]

Hi my eldest child who is 12 has just been diagnosed with type 1 diabetes and after being in hospital for a week since the diagnosis we were discharged yesterday and are on day one of being at home and the beginning of our new lifestyle of several blood sugars and insulin’s etc daily for the rest of his life now. I have two other children, also boys, one aged 8, and baby is 6months so I know it’s not going to be an easy ride. I have been all over the place with emotions and it is so overwhelming and so much to take in. Surprisingly I can’t believe how well my son is dealing with it but I can’t lie I’m being real strong as this is out life now but I’m so heartbroken and frightened by it all if I’m totally honest and just reaching out as some advise and support from other parents of children with type 1 diabetes I think will be a great thing for me. Thanks, Charlotte x

I hope you both take it as a challenge, not struggle and adopt. There is A Lot to learn and understand, but it pays off.