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Our 3 year old just been diagnosed

Discussion in 'Parents' started by Carola2017, Sep 24, 2017.

  1. Carola2017

    Carola2017 Type 1 · Member

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    Hello, I would love a bit of advice from any mum who has any experience with type 1 diabetes with their children. Our 3 year old just been diagnosed and any help would be much appreciated.
     
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  2. therower

    therower Type 1 · Well-Known Member

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    Hi @Carola2017 welcome to the forum. I'll tag @DCUKMod . Your post may benefit more in parents section.
     
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  3. DCUKMod

    DCUKMod · Moderator
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    Hi Carola - I'd tend to agree with @therower that your post might be seen by more parents in that forum area. If you just let me, or any other mod know, we can move it for you.

    If you prefer it left here, that's absolutely fine too.
     
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  4. Carola2017

    Carola2017 Type 1 · Member

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    Hello, yes please move it. I'm new to all of this and so shocked .... thank you very much for your help!
     
  5. catapillar

    catapillar Type 1 · Well-Known Member

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    I think @Garymurday87 has a very young boy recently diagnosed with with type 1, he may be able to share some experiences.

    "Think like a pancreas" is a well recommended book covering the basics of what you need to know to manage type 1. I think @noblehead may also know of a similar book for type 1 in children.
     
  6. DCUKMod

    DCUKMod · Moderator
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    No problem. I'll do that now, having been away from my keyboard for a while.
     
  7. CathP

    CathP Type 1 · Well-Known Member

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    Hi Carola,

    I'm so sorry to hear of your little ones diagnosis. It's a massive shock, and 3 years old is so tiny too. Bless them. My little girl was diagnosed nearly 2 years ago at 4 years old. It's a huge learning curve, but it's doable and as a family you all adjust to the new 'normal'.
    xx
     
  8. Garymurday87

    Garymurday87 · Member

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    Hello , my 2 year old little boy was diagnosed around the end of May .

    We are now nearly 5 months in and to be honest with you we are still coming to terms with it all.

    Like anything you will have good days and you will have bad days,


    Some days we think why does our little boy have this condition. Why is it not a murderer of a pedo ( sorry)

    but then we are thankful we have him, it could be much worse, there are a lot worse conditions that he could have.


    The biggest thing we said was that diabetes will have to fit around our life not the other way round .


    We haven’t let his condition interrupt his life at all. we have been on 2 family holidays to Spain. which although we was dreading it turned out to be just what we needed as a family.

    He has been enrolled in a little kickers football classes which he attends on weekends and he goes to kiddie gymnastics. We also try and go to a restaurant once a week.


    Our thought process is that if we get him keen on sports in the years to come if he wants to be the best in his sport he needs to always keep on top of his numbers else he wont be able to play at the top of his ability .


    We are around 2 months into carb counting which to be honest is a ball ache ( sorry for the language) each night after we put Jack to sleep myself and my wife plans his meals for the next day . just so its not a rush when the time comes to serve his meal, we can just do his sugars and insulin knowing we already know the carb number we have to input into his monitor . We are still trying to get this right though , I would say at least 1 out of every 2 weeks the nurses are adjusting his carb to ratio levels . we have got his morning numbers bang on now , but his dinner time readings can be quite high . its all just trial and error , and I have been told it will be like this until he is 25 due to his body continuing growing.



    It probably seems the worst thing in life at the min. But as each days ends you will learn to accept the disease, as a family it’s been very hard for us. My wife still hasn’t gone back to work yet , She is due to start back at her school next week. So this is our next big hurdle in order to try and gain back a normal as can be life .



    I just hope in the near future there is a cure for this. I have been reading about PEC DIRECT. This looks promising , At the beginning of the year they cured 2 people with their product , they have just started a 50 plus person clinical trial with the results to be published early 2018, so fingers crossed ,
     
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  9. Carola2017

    Carola2017 Type 1 · Member

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  10. Carola2017

    Carola2017 Type 1 · Member

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  11. Carola2017

    Carola2017 Type 1 · Member

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    Oops sorry, looks like I'm posting my replies all over the place. Not quite worked out what I'm doing!
     
  12. catapillar

    catapillar Type 1 · Well-Known Member

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    @Carola2017

    Try diabetes uk to find local groups -https://www.diabetes.org.uk/local-groups-portal although you might want to chat to the group leader to find out what's going on on the meeting you plan on attending, they cover all types of diabetes do the meeting might be more type 2 focused.

    Have a look at Jdrf for events near you, I think there are still a few one walks running and there were lots of children with diabetes on the one I went to a couple of weeks ago or their discovery days would be really worth going to - https://jdrf.org.uk/get-involved/fundraise/events/

    You could also just try asking the same question to your DSN, the hospital might know of type 1 children meet ups, or might even run one.
     
  13. Carola2017

    Carola2017 Type 1 · Member

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    Can anyone advise on the following?
    Our 3 year old is just in his second week of insulin shots and the diabetes team are daily changing our doses to suit his bs levels. The last 2 nights he's been low and dropped into hypo around 12 midnight. They have today lowered his evening novarapid from 3 to 2.5 and likewise his levamir both given at around 18.30 this evening. Now (21.30)he is at 15.7 and dropping according to his free style libre bs reading. We are postponing getting him to bed with his milk and biscuit snack (as per the diabetes team dietician schedule) and hesitant with this reading given the past 2 nights to give him a novarapid top up especially as the levamir must be kicking in too?
    Also over what length of time should any novarapid top ups be given during the night if he runs high given that the levamir is present?
    Any tips most welcome, thank you.
     
  14. dadof1

    dadof1 Type 1 · Newbie

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    Hi. Our little boy (20 months old) was diagnosed type 1, Monday afternoon. I won't echo the usual emotions, concerns, fears.. just getting involved in this forum to learn from others experiences. I have a lot to learn quickly and I will... What i want to understand more at the moment is "hypo" and how to avoid it.
     
  15. Garymurday87

    Garymurday87 · Member

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    Eating out wise i guess with everything it’s just trial error & correction if required.


    we have had nothing but positive response from everyone who we have met in restaurants etc. I think at first we thought the whole world was watching us give jack his injections but in reality no one was . it was just in our heads, the more you get use to it all.


    in terms of food the more you carb count the more you pick certain things . E.g if jack is having pizza we know that’s roughly about 30grams of carbs is he is having chips its another 15. bread is around 18 .Then any lean meat its zero so steaks chicken. the majority of veg you don’t count, then finally if he is going to have an ice cream we tend to carb him around 15 for a scoop.


    we also have the carbs and calc app on hand which if we are unsure we use to check other foods .


    we normally order his food then if the restaurant isn’t massively busy we give him his nova rapid injection straight away . If the restaurant is busy we would wait to give him his injection little. we try and make sure we give him his injection so that his food will be landing on our table no longer than 15 minutes. There have been a few occasions when it has come early , which we just told the waiter to stick it back under the lights whilst we just quickly sort him out .

    then its just a case of getting home waiting 2 hours and either giving us a pat of the back for guestimating it correctly , or making notes down in the wifes BIG PINK BOOK on where we think we over or under carbed his meal.


    in terms or events , we are still only 6 months in to his journey so we haven’t really been to any yet . you can go on the JDRF website though and they host fundraising events . like walk in the park . a mini tough mudder . paint festival etc.
     
  16. Garymurday87

    Garymurday87 · Member

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    when you are talking about "free style libre bs reading" is this wher eyou have a little sensor on the body and you can scan your phone or device order it to get a reading instead of finger pricking ? if so what do you think of this.

    in terms of tops up nova rapid takes around 4 hrs to be completly out of the system. so i would wait for hours . test him to she where you are and then correct
     
  17. Juicyj

    Juicyj Type 1 · Moderator
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    Hi there and welcome - would you like me to create a new thread for you ?

    Sadly with hypos it's incredibly hard to avoid them, they can be triggered by too much insulin, exercise, incorrect bolus calculations and in newly diagnosed the honeymoon period can also cause them as the pancreas will continue producing insulin for a brief while also, the signs to recognise are shakes, sweats, agitation, hunger, confusion, either orange or apple juice are good or glucogel, jelly babies. Using a Libre sensor will show which direction the blood glucose levels are going which can help prevent them, although regular testing is also useful and more accurate.
     
  18. dadof1

    dadof1 Type 1 · Newbie

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    Hi. Sorry if I missed this. Im only just working out how the forum and alerts work. Im also obviously busy trying to get this under control with my wife while I work full time.

    Any help would be great so yes, maybe a new thread would help?

    How long does the honey moon period last? Ive just posted (elsewhere on the forum) about our scary day today. A post from another member seemed to explain what was happening. up and down from hypo to hyper every hour ..uncontrollable.. scary.. breaking my heart for our little one... its all so hard to explain.

    Sorry to ramble. Its all so new to us and we are trying so hard to be calm and manage this for our boy but we are struggling.
     
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