Emotional Impact of T1

[SurreyDad]

Hi all,

My 5 year old daughter was diagnosed with T1 around Easter time and she has been an absolute superstar in dealing with it, and even injects herself occasionally.

She's up to 6 injections a day now, recently having to add an injection with her afternoon snack.

The one thing we've noticed is that if she gets upset, she gets really really upset - even about the tiniest things, where she shouldn't even get upset. I spoke to our diabetes team about this and they said it could be the sugar highs and lows, but they were pretty wishy washy.

My wife and I are now wondering whether she has suffered with the emotional side of having diabetes?

Although she has coped brilliants and far better than we could have hoped for, has it effected her emotionally? Should we take her to a counsellor or be doing anything else to make sure she's really coping deep down?

Don't get me wrong, she's an extremely happy kid, but she's gone through a lot and obviously has to deal with a lot on a day to day basis.

 

[azure]

High and low sugars do affect your mood, but is say it's perfectly possible she's still coming to,terms with the huge change to her life. Type 1 isn't easy for anyone, especially not a young child.

Have you asked her team about counselling?

 

[SurreyDad]

High and low sugars do affect your mood, but is say it's perfectly possible she's still coming to,terms with the huge change to her life. Type 1 isn't easy for anyone, especially not a young child.

Have you asked her team about counselling?

We haven't no, it's only something we've thought of recently with her getting (over) upset about minor things. As I said, she has been amazing since diagnosis... I just want to do the best for her.

 

[azure]

We haven't no, it's only something we've thought of recently with her getting (over) upset about minor things. As I said, she has been amazing since diagnosis... I just want to do the best for her.

Then perhaps make enquiries about what's on offer? She may prefer to speak to a known person like a DSN rather than a new person, so that's something to bear in mind too.

It takes time to come to terms with a Type 1 diagnosis. I don't know exactly what helped me, but I think it was a gradual change week by week. If her team is able to put you in contact with other T1 children that might help too, so that she can see she's not alone.

 

[Jaylee]

Hi all,

My 5 year old daughter was diagnosed with T1 around Easter time and she has been an absolute superstar in dealing with it, and even injects herself occasionally.

She's up to 6 injections a day now, recently having to add an injection with her afternoon snack.

The one thing we've noticed is that if she gets upset, she gets really really upset - even about the tiniest things, where she shouldn't even get upset. I spoke to our diabetes team about this and they said it could be the sugar highs and lows, but they were pretty wishy washy.

My wife and I are now wondering whether she has suffered with the emotional side of having diabetes?

Although she has coped brilliants and far better than we could have hoped for, has it effected her emotionally? Should we take her to a counsellor or be doing anything else to make sure she's really coping deep down?

Don't get me wrong, she's an extremely happy kid, but she's gone through a lot and obviously has to deal with a lot on a day to day basis.

Hi,
I was a D kid once upon a time...

My thoughts would be. How did you & your wife initially deal with the diagnosis.?

 

[SurreyDad]

Hi,
I was a D kid once upon a time...

My thoughts would be. How did you & your wife initially deal with the diagnosis.?

My wife was/is very upset, but she doesn't show this to our daughter (or tries not to).

I've been more 'it is what it is'. It's no good moping about it, we're lucky it's not something worse, so we just get on with it.

As I've said, my daughter isn't showing me any real reason to be concerned - but I know it's a huge thing and just want to make sure she is emotionally OK, even though on the whole she seems it.

 

[noblehead]

As I've said, my daughter isn't showing me any real reason to be concerned - but I know it's a huge thing and just want to make sure she is emotionally OK, even though on the whole she seems it.

That's understandable, what parent doesn't want the best for their child @SurreyDad

For peer support you could get in touch with the JDRF, they put parents like yourself in touch with other families in your area to help support one-another, it may/may not help:

https://jdrf.org.uk/

 

[T1Dad]

Also have a 5 year old Daughter about 4 months in now and she is coping well. We do get these mood swings which are completely random and unexplainable and can take a long time to sort out!! Really not sure if it's the T1 or just her being her as a 5 year old. She did used to have moments like this before diagnosis....although maybe not as often. Just now that you mention it I have started thinking about it!!

Can't really imagine what she must be going through in her little head. For now, we'll not worry about it and won't mention it to her. If it carries on then might have to take some action. Looking forward to the teenage years already

 

[Type1asem]

There is also a fb group where one of the mums have matched D kids and siblings as penpals. Ask your DSN if there's other patients your daughters age which I'm sure there is and ask them to pass your number on to them then you could all link up. I've recently done this I'm just waiting to hear back from the DSN. I know how hard it is my dd was diagnosed just 3 months ago and it's hard but like you I've just got on with it because what's the alternative? My husband has taken it really hard though.
Keep us posted.

 

[therower]

Hi @SurreyDad . Sounds like your little girl is a star. I'm not in a position to offer any practical advice regarding your daughters diabetes , wasn't a diabetics child myself and have never been in your position of having a loved one with diabetes.
But I am a granddad to a 5yr old little madam and a 2yr old boy bruiser.
Up until now I had never realised just how much kids pick up on the smallest things, I'm sure as parents you are so busy with everything else it slips you by.
My granddaughter will pass comment about her home life that I find astounding and when I question my daughter about it she is even more astounded that little madam had picked something up and stored it away in her memory bank.
I guess what I'm saying is that kid's don't miss anything and will pick up on your every emotion.
If she is sensing any anxiety from you and her mum it may be a cause of her mood swings.
All the best going forward.

 

[SurreyDad]

Also have a 5 year old Daughter about 4 months in now and she is coping well. We do get these mood swings which are completely random and unexplainable and can take a long time to sort out!! Really not sure if it's the T1 or just her being her as a 5 year old. She did used to have moments like this before diagnosis....although maybe not as often. Just now that you mention it I have started thinking about it!!

Can't really imagine what she must be going through in her little head. For now, we'll not worry about it and won't mention it to her. If it carries on then might have to take some action. Looking forward to the teenage years already

You've hit the nail on the head there - you really don't know what they are going through in their little heads!

Maybe it is just her age and I'm over thinking this!

 

[Jaylee]

My wife was/is very upset, but she doesn't show this to our daughter (or tries not to).

I've been more 'it is what it is'. It's no good moping about it, we're lucky it's not something worse, so we just get on with it.

As I've said, my daughter isn't showing me any real reason to be concerned - but I know it's a huge thing and just want to make sure she is emotionally OK, even though on the whole she seems it.

Hi,

Sorry I took a while getting back. You've had some fantastic replies/advice & i've no wish to muddy the waters..

Sounds pretty much like the "set up" when I was a kid.
My Dad was cool.

My Mum, was not unlike your wife's aproach.. However I did pick up on it.
No one's fault I reasoned & got hands on, stuck in.. My diabetes. Don't worry! Enpowering.. Lol, probably too much like my dad... No one likes their mum unhappy.!

Your daughter may well just be frustated, at the change in emotional dynamics she can empathise with?

 

[GrantGam]

I was 23 when I was diagnosed, and when the Dr told me over the phone - I had never felt fear like it... It's a huge shock to adults, so I'd imagine it's even worse for children to accept. I also found there wasn't just the initial shock at diagnosis, for me there were almost aftershocks. By aftershocks I mean various moments of reflection months after diagnosis where I'd think "wow, this is really life changing and complicated", "why me?", "can things get any worse?", etc, etc.

It may be that your daughter is experiencing the usual ups and downs, mood swings, etc that are expected for someone that age - but these ups and downs are just exaggerated by the reality of living with a chronic disease that is notoriously difficult to manage.

I'll second @noblehead's advice wrt getting in touch with a charity such as JDRF. It's very beneficial to know that you're not alone in living with something like type 1 diabetes.

 

[SurreyDad]

Thanks everyone - I will ask her if she would like to get in touch with other kids with diabetes.

So far, we've treated her as normal and it hasn't stopped her doing anything, even if we have to nip in to parties or play dates to do her jabs! Meeting other kids with diabetes may be a good thing for her!

She's done well in owning her diabetes - taking books in to school, answering questions from classmates etc. She was also super proud that I raised money for Diabetes UK and gave her my medal, which hangs proudly on her bed!

The more I think about it, the more I'm probably over thinking her mood swings... probably just her age with the extra input of diabetes!

 

[VickyL]

Hi SurreyDad, your post really struck a cord with me because it was exactly the same for my little one. She was diagnosed last year aged 7 and she is such a happy little girl. She does so well and takes it all in her stride, started to inject herself and doesnt let it stop her doing anything. She never really had tantrums before, sulks yes but not like she has now. It has improved in the last few months but she would get upset over something really little like us asking her to get dressed. She started hitting, biting and kicking us and her face would contort she was so angry. The only way to calm her down would be to hold her until she exhausted herself and then she'd feel awful and would cry and say sorry. We asked to see the psychiatrist at East Surrey and she was great. She sat with her and asked her how she felt. She explained to us that this was her way of venting her frustrations and that children sometimes can't control their emotions and this happens. She called them 'storms' because they came on so quick and then the storm would break and it would be over. The 'storms' didn't seem to be related to high blood sugar but would make her high as she got so stressed out. As time goes by she seems to be more able to deal with her feelings and she tends to head these tantrums off earlier and earlier. I think it's so hard for them and their anxieties and frustrations build up, and you have to try and just ride through the storm and just be there with her (we stayed in her room over the other side to avoid the kicks!) so that she doesn't feel alone. It is worth seeing the psychiatrist, for you aswell. One thing we did realise after seeing her was that our daughter picks up on our emotions and this affects her. Good luck with this, it will get better x

 

[donnellysdogs]

An ambulance man explained to my hubby and me (after 30+ years of me being T1!), the following:

Normal levels-normal.
Higher levels-narky before DKA.. but can. E at any levels above normal..
Low levels-more argumentative and physically more likely to lash out..

It was the narkiness that struck a chord with me...

Under 4.0 before unconsciousness-it is true.. I did hit a doctor trying to put a drip in me on. Y first severe hypo.. I have been known to run round the house naked at night if I've been asleep. Or scream and shout but always physically more involved..
i can be also cery brutally honest and remember nothing. When I start to recover I have poke fun at a bald ambulanceman and called him "baldie".... I would never, never eversay such a thing when "normal"

Highs..very "narky" and bad tempered-swear easily (again, I never, never swear when "normal". Not do anything physical as I get so tired and drift in to exhaustion very, very easily.


The quickness in levels changing have a huge impact on me. If levels change slowly then people do not notice much difference. If levels have changed quickly then my temper and mood turns just as fast.

The quicker levels are maintained within "normal" the better for moods.

Please don't think this sounds like I been out of control all my life!!-lol I haven't and thats why I really didn't realise my mood changes...mine have only been so noticeable since having bad times with my pump.. one day good mood, the next I'm the devil.. but this is just a one off situ being investigated...

Children also have learning, friends, school etc to contend with... add that on top and its not easy.

Not easy for parents to watch and see, or indeed understand...

 

[meg7024]

Hello,

I wasn't diagnosed at 7 years old. I used to get upset for 2 main reasons:

1. I was different from all my friends and family, it wasn't as simple as just going to a friends house to play, it envolved injections & worrying my friends parents. At school having a biscuit or something when the other children couldn't wasn't fun, it was embarrassing. Other children don't understand what diabetes is so you are seen as the "Ill" girl or the outsider.

2. My parents were upset. Of course who wants their daughter to be diabetic?! I could see/sense the strain diabetes put on my parents from all the worry and stress. Luckily I injected myself after a few days of being diagnosed so that helped as they hated doing that. Having a child is worrying enough so add diabetes into it & they will be worried, of course a small parents duties.

To solve this I attended hospital events where I met other children (I still speak to them all to this day) and I also went to diabetes uk trips- a overnight stay with activity, fun and plenty of doctors to look after you. Then I began to feel less alien.

Secondly, don't let your little girl see you're worried and don't single her out. I'm 22 now and diabetes controls my emotions a lot. Give her a normal, happy life and don't let diabetes take control of her childhood.

Apologies if this doesn't make much sense, ironically I feel a little hypo!

Hope this helps good luck.

 

[rockape37]

These days i think we are always looking for some sort of medical reason for a particular behaviour. Your little girl is only 5 yrs old, still growing and still learning, mood swings can be very much part of that.

I personally wouldn't have thought that at 5 yrs old would be able to understand enough about diabetes for it to get her down.

Your a worried parent and i do understand your concerns for your little girl.

Regards

Martin

 

[Lifeissweetenough]

Hi all,

My 5 year old daughter was diagnosed with T1 around Easter time and she has been an absolute superstar in dealing with it, and even injects herself occasionally.

She's up to 6 injections a day now, recently having to add an injection with her afternoon snack.

The one thing we've noticed is that if she gets upset, she gets really really upset - even about the tiniest things, where she shouldn't even get upset. I spoke to our diabetes team about this and they said it could be the sugar highs and lows, but they were pretty wishy washy.

My wife and I are now wondering whether she has suffered with the emotional side of having diabetes?

Although she has coped brilliants and far better than we could have hoped for, has it effected her emotionally? Should we take her to a counsellor or be doing anything else to make sure she's really coping deep down?

Don't get me wrong, she's an extremely happy kid, but she's gone through a lot and obviously has to deal with a lot on a day to day basis.

You sound like a really supportive and caring family. I have type 1 and I'm also mum to 2 grown up boys. All I know is type 1 is hard to get ones head around for anyone. Whilst your daughter is coping more than admirably on a physical level, of course she is bound to feel confused/ overwhelmed by the disease. These are big feelings that that the best of us find hard to cope with and I'm sure she can't find the words to know and express herself- especially at such a young age. Her response sounds absolutely natural under the the circumstances. As to counselling? Personally, im a little wary of more 'emotional' prodding, poking and labels at this stage. Don't underestimate a big cuddle (which I'm sure come in ample supply anyway) and someone saying 'I know' without getting too bogged down by the spilt milk/ wrong shoes that your daughter is appearing to get upset about. The tears might well not have anything to do with the 'minor' issue but are a welcome outlet to help her cope with bigger anxieties she can't express at the moment. If things remain tricky and it's hard as a family- have you thought about family counselling? It might help your daughter feel as though you are all in this together as opposed to feeling it's all her- do you know what I mean? Good luck x

 

[SurreyDad]

Hi SurreyDad, your post really struck a cord with me because it was exactly the same for my little one. She was diagnosed last year aged 7 and she is such a happy little girl. She does so well and takes it all in her stride, started to inject herself and doesnt let it stop her doing anything. She never really had tantrums before, sulks yes but not like she has now. It has improved in the last few months but she would get upset over something really little like us asking her to get dressed. She started hitting, biting and kicking us and her face would contort she was so angry. The only way to calm her down would be to hold her until she exhausted herself and then she'd feel awful and would cry and say sorry. We asked to see the psychiatrist at East Surrey and she was great. She sat with her and asked her how she felt. She explained to us that this was her way of venting her frustrations and that children sometimes can't control their emotions and this happens. She called them 'storms' because they came on so quick and then the storm would break and it would be over. The 'storms' didn't seem to be related to high blood sugar but would make her high as she got so stressed out. As time goes by she seems to be more able to deal with her feelings and she tends to head these tantrums off earlier and earlier. I think it's so hard for them and their anxieties and frustrations build up, and you have to try and just ride through the storm and just be there with her (we stayed in her room over the other side to avoid the kicks!) so that she doesn't feel alone. It is worth seeing the psychiatrist, for you aswell. One thing we did realise after seeing her was that our daughter picks up on our emotions and this affects her. Good luck with this, it will get better x

Thanks for sharing and I'm glad you and her are dealing with these feelings now.

We too are at East Surrey Hospital!