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Very depressed

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eshobabu

Well-Known Member
Messages
49
My 6yr old daughter was recently diagnosed T1D, and something happened that I cannot fathom how to respond to. Today she said, "I don't like myself because I have diabetes". I don't know how to handle this. I hugged her and tried to keep a happy face but I was a million pieces inside.

The other day she said "when this diabetes is cured can I stop taking this injection" - She does not quite comprehend that this is a lifelong thing.

I am really not sure how to handle this. Any advice would help :-(.
 
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It is a difficult situation. She needs to come to terms with the permanence of the condition as soon as possible. Could you introduce her to a T1 adult who has had it a long time?
 
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It’s difficult as an adult to fully comprehend all the ways your life changes so I can’t imagine how hard it is for a child. On the positive side she is talking to you and you have the opportunity to help her understand ease her fears.

Abbott emailed about a set of children’s resources a few weeks back. I think you can access this without being an Abbot customer but you do have to register. They offer several online story books explaining diabetes for kids.

https://progress.freestylediabetes.co.uk/

My youngest just turned 8, she had all the same questions. She frequently refers to ‘old mummy’ & ‘new mummy with diabetes’ sometimes with sadness & frustration at how things have changed. I’ve just been very open with all my kids about what I have to do on a daily basis to manage things & let them get involved where they can. School also provides nurture groups where they can do some mindfulness activities and talk to another adult about things if they want to. But depending on where you are in the US your probably home schooling.

Maybe have a look on YouTube & see if there’s some kids that talk about their T1 experience?
 
eshobabu said:
My 6yr old daughter was recently diagnosed T1D, and something happened that I cannot fathom how to respond to. Today she said, "I don't like myself because I have diabetes". I don't know how to handle this. I hugged her and tried to keep a happy face but I was a million pieces inside.

The other day she said "when this diabetes is cured can I stop taking this injection" - She does not quite comprehend that this is a lifelong thing.

I am really not sure how to handle this. Any advice would help :-(.
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As a mum I sent a hug because that is a heart breaking thing to hear. I am type 1 and was diagnosed as a child (10 years old). At the start it was very exciting for me but I know my parents were very anxious seeing my condition through adult eyes and being aware of all the risks. She's probably picking up on some of that anxiety and i don't know how you can learn not to feel depressed, anxious or worried about it other than by being in touch with fellow parents or going on a weekend break or day out (Diabetes UK used to organise these things but not now obviously).
Btw I am sure you are very good at putting on the happy face but maybe it would do no harm to say that you also feel sad that she has to deal with this too. Is she on a pump and cgm or could she be? That tech plus a low carb diet can really help (see TypeOnegrit on Facebook).
As she is 6 she will undoubtedly adapt to this but needs to feel normal too. Initially there is a lot of fuss around jabs and tests etc. but that should become part of your family's routine whilst her normal life continues if that's possible in these weird times?!
 
eshobabu said:
My 6yr old daughter was recently diagnosed T1D, and something happened that I cannot fathom how to respond to. Today she said, "I don't like myself because I have diabetes". I don't know how to handle this. I hugged her and tried to keep a happy face but I was a million pieces inside.

The other day she said "when this diabetes is cured can I stop taking this injection" - She does not quite comprehend that this is a lifelong thing.

I am really not sure how to handle this. Any advice would help :-(.
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eshobabu - What a time you're both having.

In UK, most of the hospital clinics have specialist teams for paediatrics, which include specialists, including psychologists. I'm not suggesting for a moment there is anything wrong in terms of how your daughter feels, but maybe such a professional could help with some tools and strategies to help you both on this path.

Also, at the clinic near me, there is a very strong families group, where the children meet regularly, for play, trips, events, sports and so on, and clearly at those times, a parent, or parents will tag along. Many parents say these groups have really helped them to help their kids. It's also a grea way for those more newly diagnosed to see youngsters, like themselves, living very well with T1.

Obviously, with COVID etc., at the moment, I doubt those groups will be meeting face-to-face, but I bet they are carrying on using Zoom calls and so on.

Maybe have a chat with your daughter's team about how things are.

I feel for you both.
 
Hi. How sad. There is a Children s and Teens section amongst the forums and perhaps they have some contact links. Perhaps your local Diabetes clinic has some suggestions for 'counselling'
 
DCUKMod said:
eshobabu - What a time you're both having.

In UK, most of the hospital clinics have specialist teams for paediatrics, which include specialists, including psychologists. I'm not suggesting for a moment there is anything wrong in terms of how your daughter feels, but maybe such a professional could help with some tools and strategies to help you both on this path.

Also, at the clinic near me, there is a very strong families group, where the children meet regularly, for play, trips, events, sports and so on, and clearly at those times, a parent, or parents will tag along. Many parents say these groups have really helped them to help their kids. It's also a grea way for those more newly diagnosed to see youngsters, like themselves, living very well with T1.

Obviously, with COVID etc., at the moment, I doubt those groups will be meeting face-to-face, but I bet they are carrying on using Zoom calls and so on.

Maybe have a chat with your daughter's team about how things are.

I feel for you both.
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Thank you - there are actually groups here as well. They meet and all the kids can socialize. Unfortunately since COVID everything is shut down - I hope it gets better soon - The videos on youtube have helped immensely - we show her all these kids performing the procedures - especially when we did the dexcom CGM. Fortunately, she is such a sound sleeper, we do the dexcom replacement when she is asleep and she does not even wakeup. She is a very happy child. As soon as they took her off the IV when we were in the hospital all she did was run around the bed in the hospital room.

I am debating putting her on the pump. She seems to be needing less and less insulin every week, so I think she might be honeymooning at some point.
 
eshobabu said:
Thank you - there are actually groups here as well. They meet and all the kids can socialize. Unfortunately since COVID everything is shut down - I hope it gets better soon - The videos on youtube have helped immensely - we show her all these kids performing the procedures - especially when we did the dexcom CGM. Fortunately, she is such a sound sleeper, we do the dexcom replacement when she is asleep and she does not even wakeup. She is a very happy child. As soon as they took her off the IV when we were in the hospital all she did was run around the bed in the hospital room.

I am debating putting her on the pump. She seems to be needing less and less insulin every week, so I think she might be honeymooning at some point.
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I wonder if your team/clinic could put you in touch with, say a group leader, who might be able to link you up with another family, with a child of similar age? Could make for a valuable friendship, and given time, maybe play-dates.

Here a high proportion of kids go onto pumps, but those still need quite a bit of tending, and without understanding and having a real, good grasp of the basics in the most basic forms (testing, injecting, exercise etc.), then going to a pump can be unhelpful, because some day down the line one can fail, and without the foundations, that can go critical, and medically dangerous, very quickly.
 
eshobabu said:
My 6yr old daughter was recently diagnosed T1D, and something happened that I cannot fathom how to respond to. Today she said, "I don't like myself because I have diabetes". I don't know how to handle this. I hugged her and tried to keep a happy face but I was a million pieces inside.

The other day she said "when this diabetes is cured can I stop taking this injection" - She does not quite comprehend that this is a lifelong thing.

I am really not sure how to handle this. Any advice would help :-(.
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Hi,

Depending on your daughters persuits, you could try finding examples ot diabetic sports personalities, actors or musician/singers which may give a little inspiration?
 
My daughter diagnosed recently who is 12 years old. I could understand your pain.
As a parent, don’t break with tears in front of your kid. Keep her motivated.
Your care plan nurse could help with similar age in your neighbourhood area. It will give you and kid more confidence and support which is needed at the moment.
I know it is very tough and U.K. is one of the best country in the world on T1D researches. Let us hope, soon there will be a permanent solution for this.
 
I agree with posters above that a brilliant resource especially for parents of young diabetics is the Facebook group Type1Grit. Also do badger your GP/endo clinic for both a CGM and a pump for her - I believe young children are priorities for both under the NHS. She may need to adjust to a different lifestyle than some of her peers, but NOT a worse one.
 
eshobabu said:
My 6yr old daughter was recently diagnosed T1D, and something happened that I cannot fathom how to respond to. Today she said, "I don't like myself because I have diabetes". I don't know how to handle this. I hugged her and tried to keep a happy face but I was a million pieces inside.

The other day she said "when this diabetes is cured can I stop taking this injection" - She does not quite comprehend that this is a lifelong thing.

I am really not sure how to handle this. Any advice would help :-(.
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You have to carefully introduce her the idea of this being a long term thing. Very sad to be honest. I accepted my diabetes from the start but like I’m 5 months in and still regularly read clinical trials and I’m trying to find something I could take as I’m still in my honeymoon so I may have some chance of preserving my beta cells.
 
Hi @eshobabu, I feel sad that your daughter says she doesn’t like herself because she has Type One. Has she been able to talk you about any any other reason she doesn’t like herself now, apart from having to have injections? If she is using insulin pens there are stickers available that might make the pens more personal and friendly, especially if she chose the stickers herself. Maybe she could also give her pen a name? A nice one of course.
I was older, 20, when I was diagnosed, so I stand back and let those who were younger say what it was like, but I know that it helped me that my friends saw my syringes as exotic and special. They were just ordinary syringes, glass ones, but they could have been seen as weird or odd, not exotic.
The long term implications of having Type One are hard for a six year old.
Is it hard for you too? There’s a lot of extra watching, thought and planning you now have to do. So I’m sending you and your daughter some virtual hugs.
 
I was diagnosed at around age 6, and i struggled with what sounds similar to how your daughter feels. I didn't really understand what was going on and I continued to struggle mentally. I can't imagine how you feel as a parent, but as a T1D child my parents just being there and letting me get out my frustration and sadness at having diabetes was really helpful for me.
They tried to make it as normal as possible for me, at school there happened to be a teacher who had T1, so we would do our lunchtime bolus together and we would record them on a star chart in his class room. A really silly, simple thing, but it singled me out in a positive was rather than a negative way.
As someone above suggested, finding someone your daughter admires who is also T1 may help her understand the permanence, for me, mine was Nick Jonas (I was a HUGE jonas brother fan), and i really idolised him, even now, which really helped me see that I could be happy.
 
Ashleighrose414 said:
I was diagnosed at around age 6, and i struggled with what sounds similar to how your daughter feels. I didn't really understand what was going on and I continued to struggle mentally. I can't imagine how you feel as a parent, but as a T1D child my parents just being there and letting me get out my frustration and sadness at having diabetes was really helpful for me.
They tried to make it as normal as possible for me, at school there happened to be a teacher who had T1, so we would do our lunchtime bolus together and we would record them on a star chart in his class room. A really silly, simple thing, but it singled me out in a positive was rather than a negative way.
As someone above suggested, finding someone your daughter admires who is also T1 may help her understand the permanence, for me, mine was Nick Jonas (I was a HUGE jonas brother fan), and i really idolised him, even now, which really helped me see that I could be happy.
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Thanks a lot! Thankfully she has adjusted quite well, and she is entering honeymoon so the daily injection frequency has gone down, which is helping. She has a teacher who has a 10 yr old with T1D so we have been communicating with them as well, but all remote because of COVID. She is a very happy child and seems to be adjusting much better now. The stickers help! We got a lot of disney bandaids which are helpful. She does seem to not truly grasp the permanence of this thing but I guess she does not need to right away. I'll mention Nick Jonas, but I don't think she knows who that is... I wish they made a Disney movie or something with a T1D character - she is in love with Dory so I kinda told her Dory has a very similar thing.
 
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