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My 7 year old little girl been diagnosed with diabetes 1 three weeks ago

Discussion in 'Type 1 Diabetes' started by sara.c, Dec 20, 2016.

  1. sara.c

    sara.c · Newbie

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    Hi my name Sara, my daughter Lilly was diagnosed with diabetes 1, three weeks ago. I new something wasn't right when her moods became really out of character,she was very up and down., Being sick but no other symptoms that would suggest a virus. We went to see the doctor and Lilly was taken to hospital, she was given insulin and I was told she had diabetes within an hour. She was in hospital for 4 days and before she could even process what was happening to her, we were injecting her with insulin, She asks me everyday why i cant make it better and why she has to have Diabetes. I tell Lilly, we are making her better, that's why we have to do the injections. I tell her that sometimes things just happen that neither lilly nor anyone else caused this. I am really trying to stay positive but some days like today feel like my heart is breaking into a million pieces. We went to see Santa and when she was asked what she wanted for Christmas she said not to have diabetes anymore. That she doesn't want presents ever again if it means she doesn't have diabetes. Today She had two Hypos, it made her feel so poorly and upset, she has been in bed most the day. Would love to hear from others.All i want is to make my baby feel better and not be so sad. Its heart breaking and just want to make it as good as it can be for her.
    xxxx
     
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  2. George_Henderson

    George_Henderson Don't have diabetes · Member

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    Hi Sara,

    I don't have type 1 (I'm just a researcher) and sadly don't think anyone can take it away yet, but the most supportive Type 1 diabetes community I have encountered if you want to take a different approach is Type 1 Grit. http://typeonegrit.blogspot.co.nz/2014/03/thanks.html

    They take a low carb approach which helps to manage hypos effectively so it may be something you want to look at in good time, once the diagnosis has sunk in.

    It will be different to what you've been told by your healthcare professionals and it takes a bit of work if you choose to take this approach as it may require changes to how you handle insulin doses with your daughter, but these people have experience of how to do this - there are over 500 of them in the Facebook group. Just ask to join and they will welcome you and your daughter. There are many parents there.

    It's something to consider as an option.

    Edited by tim2000s.
     
  3. Juicyj

    Juicyj Type 1 · Expert
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    Hello @sara.c welcome to the forum :)

    It sounds like you are doing an amazing job already, it is difficult to come to terms with for both parent and children, there's a lot of information to take in and you really are thrown in at the deep end. There's lots of resources available to help you, have you contacted Juvenile Diabetes Research Foundation yet ? They do meet ups with other type 1 kids, and can help you daughter feel more accepting of this. We also have a lot of parents who use the site too who I'm sure will be happy to chat to you. It will get easier in time as your knowledge grows and your daughter gets used to this knowing that she can feel better with taking insulin too. Out of interest do you know what caused her hypos ? I would speak to her nurse about these as her insulin may require adjusting, very often we find with newly diagnosed that once insulin is administered that the pancreas can start working a little again in what's called the honeymoon period as taking insulin can reduce the stress it's been under so it kicks back into life, meaning insulin needs to be reduced for a while, it does help in the early days in getting used to administering insulin and taking smaller doses, however it is a temporary phase and your daughters insulin needs will increase in time, but it's useful to know this, so keeping a good dialogue with your nurse to manage the insulin doses and for peace of mind is important. It's also worth getting a copy of 'Think like a pancreas' for so,e extra reading, knowledge really is power with learning as much as you can.

    We are all here to support you too, so please let us know if we can help ;)
     
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  4. sara.c

    sara.c · Newbie

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    Thank you so much. So new to all this but it's nice to see how it does get easier specially for my daughter. I showed her this website last night as she feels very alone and it's amazing site to look at. She loved reading all the blogs from the children and is so excited to make new friends. Thank you so much for your advise it really helps
     
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  5. Juicyj

    Juicyj Type 1 · Expert
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    Yes I think with kids it's about fitting in, they do adapt a lot quicker than us adults but don't want to appear different to their mates and at this age friendships are so important, I have an 8 year old so I understand the mindset however I'm the one with the diabetes. My daughter knows a lot already about it and is a great buddy particularly when I have a hypo she knows what to do. At this age they really do absorb so much knowledge so your daughter will learn quickly. As I mentioned before JDRF is a great charity for connecting kids, also a useful info resource too, they have a newly diagnosed pack too.
     
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  6. leking

    leking Type 1 · Well-Known Member

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    Hi Sara, it's a big change for her for sure. She'll definitely pick on on your emotions (which I guess might be all over the place too! I know my mum's was when I was diagnosed at age 11).

    Try to stay positive for her, and add some fun into it. She can customise her bg monitor for example. This is also a sign of her becoming grown up maybe, lots of things like that perhaps may help?

    I was diagnosed young myself, now a fit and healthy 31 year old. I can promise you that this doesn't need to make her life any less happy than it would have been.
     
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  7. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi and welcome, have a look at the parents section, as other parents may have gone through something similar It's very early day's and such a lot to take in, which can be an anxious and a scary time for all the family, but it will get a little easier in time. You sound as though you are doing a great job.
    Take care x
     
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  8. isjoberg

    isjoberg Type 1 · Well-Known Member

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    Hi Sara!

    I'm so sorry to hear about your daughter being diagnosed. The comment she made about Christmas presents is very sad, although one thing you could do, to get her to look forward to meeting other kids with diabetes is maybe start looking at summer camps? I went to a diabetes summer camp when I was 8 and it was the best week of my life as a diabetic! It's a week with lots and lots of other diabetic kids, people there to take care of her and lots of the volunteers are also diabetic. For me, it was so much fun to go somewhere where I could have lots of fun and not worry about letting my parents know what was happening and them having to drive out to give me injections. If you go on the diabetes UK website you can register interest for 2017! I'll put a link in a lower post
     
  9. isjoberg

    isjoberg Type 1 · Well-Known Member

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  10. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    I got diagnosed on my 8th birthday.. My mum's heart at the time "took a detour too".. I grabbed the "wheel" at an early age.
    40 odd years later.. ? Reasonably healthy with a happy "normal" for me life.. My mum in her old age has "consistency" & is happy too! You can still get what you hope for, diabetic or not...
    Lol, I didn't know any diabetics at that age neither.. But now? I'm up to my ears in em. ;)
     
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  11. T1Dad

    T1Dad Parent · Well-Known Member

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    Hi Sara,

    Sorry to hear of your daughter's diagnosis. It's a terrible thing to happen to a young child. I'm proud dad to a 5 year old girl diagnosed around 5 months back. It personally took me around 6 weeks to come to terms with it and accept it. Since then, it's been much better. Give it some time.

    There's load of sound advice on here as you've probably found. Take your time and read as much as you can.

    In terms of your immediate (and most important) concern, I would advise to try and make this as much fun as possible (I know that may sound perverse!!). For example, we refer to the lancing device as 'pricky-proo-looloo' and have some other funny names for her diabetes kit. We have a bright pink case which fits everything nicely and compactly. For most of the blood tests, we try to predict the reading and treat it as a game. She always has the meter in her hand and wins so we always emphasise that she is the champion and always knows what the reading will be! Encourage her to do as much as possible herself.

    Look at the Freestyle Libre if you have not done so already. Believe me, it takes a lot of the burden away...especially when out and about. You can apply for DLA to cover the cost. We decorate hers with cool stickers which she loves.

    We've had the 'I hate diabetes...' comments but not very often. Try to keep the answer short and almost ignore it. Do meet up with other children with T1 as advised above. This will make a huge difference for you and her. A Type 1 Discovery Day (JDRF) is an ideal way to do that.

    Stay strong.
     
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  12. GrantGam

    GrantGam Type 1 · Well-Known Member

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    There's nothing we can do or say to take away the pain and the hopelessness that you're feeling right now...

    What I can say though, is there are many fantastic people here who will be at your service, day or night, to help with any queries you may have. Although none of us are not medical professionals, most of us are diabetics and understand the intricacies and issues that are faced everyday living with the condition. You have come to the right place:)

    I'm sure you will also have an excellent diabetes team who will be able to assist at all times when you feel overwhelmed or consumed by it all. That is their job and they will be more than happy to help.

    Out of interest, where do you live? It's possible that you may be able to get in touch with forum members that live nearby. And if you wanted, meet in person. It helps to bring home the fact that you're not alone in this situation. Even better, your daughter might even meet someone her age who is also a T1D.

    There's comfort in knowing that you're not alone, and I can guarantee that you (and most importantly you're daughter) are not:)
     
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  13. AndBreathe

    AndBreathe I reversed my Type 2 · Expert
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    Sara - I don't have any relevant experience or wisdom to offer you, but wanted to make a comment.

    I don't know where you live in the country, but the most local major (15 miles from me) Diabetes Centre here has quite a bit of common activity for child diabetics, from summer camps, to a choir, to parties and summer holiday activities.

    Our local Diabetes UK group recently had the choir come and sing some Christmas music to us. It was absolutely lovely. Without knowing the common bond, one would never have know they had diabetes. Their "leader" did describe herself as "The Bag Lady" as she always carries a decent hypo kit, and other potentially helpful supplies. They all had to do their bloods before performing, and they just got on with it.

    Most of the kids had a parent/adult with them (as they had travelled) and they all seemed to be having a jolly good catch up and gossip, within their own spin-off support group.

    There may just be more out there in your community than you realise. Until a couple of months ago, I had no idea all this was available for the children. Please do ask at your hospital/clinic or wherever you receive day-to-day support for your daughter. You could find a decent support network for the whole family.
     
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  14. sara.c

    sara.c · Newbie

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    Hi, thank you so much for your comments, support and advise . Been a rough couple of days specially for Lilly been having 3-4 hypos a day. Her team adjusted her day time insulin yesterday but she had two more before 1pm today. So the team has advised we drop a unit from her background one. We are located in Brighton.
    Registered for next year invents and Lilly making contact with other children through this website. Again thank you so much
     
  15. yingtong

    yingtong Type 1 · Well-Known Member

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    Hi Sara,I hope reduce some of your fears.I have been T1 for nearly 55 years and have traveled all over the world,working,I have played many sports,some,to semi-professional level and I only have a couple very minor complications.Providing your daughter looks after her diabetes she can look forward to a heathy life and achieve whatever she wants.My one saying that I live by is I rule my diabetes if doesn't rule me.I hope you all have a wonderful Christmas.
     
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