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Newly diagnosed/ really struggling

Discussion in 'Parents' started by Jayne1607, Apr 25, 2014.

  1. Jayne1607

    Jayne1607 Parent · Newbie

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    Hi everyone,
    My son was diagnosed with T1 last week at 5 years of age (he turned 6 on Tuesday) and we are still waiting for it all to sink in really. My son has behavioural issues and has been referred to CAHMS as they believe he is 'somewhere on the spectrum' . I already found day to day life an incredible struggle with things like getting him to school, etc, as he has complete and utter meltdowns and loses control. Due to the length of the waiting list it will be several more months before CAHMS can offer us even an initial appointment. Now he has been diagnosed T1 I feel like I can't cope anymore. He isn't taking very well to the injections and has to be held down to have them. I understand it's completely normal for a child of his age to find all this terrifying, but everyone keeps on saying 'he will get used to it' however my son doesn't get used to things. He has 'ok' days in every aspect of his life, but these are always outweighed by bad days where you just cannot reason with him. He doesn't have what is considered to be 'normal emotional responses' to general everyday situations, so how on earth is he supposed to respond to this. My husband works long hours (gone from 6.45am to 10.45pm every day) so I have to deal with it all alone and I also have an 8 year old boy and 2 year old girl to look after, so I'm currently feeling overwhelmed :(

    We are still trying to get his insulin levels right, adjusting them a little a day at a time. But his BG levels currently spend most of the day in the teens. The diabetes nurse had been phoning daily to check how he was and direct any adjustments and she was supposed to call today to see that we were ok for the weekend but she didn't, and I couldn't get hold of her. My son has been constantly hungry since starting on insulin and I am struggling with what to give him. I am feeding him healthy balanced meals along with a healthy slow-releasing carb snack between each meal to try and keep his blood sugars stable but he wants to eat every second of the day so I am trying to appease him with low carb snacks that wont affect his blood sugars too much the rest of the time to try and keep him more stable. I am struggling with ideas for snacks though as he is already sick of eating cheese, raw vegetable sticks, ham and sugar free jelly and he doesn't like the other items on the list we were given, like olives, seeds, nuts, etc, so if anyone has any other snack ideas it would be much appreciated.

    I am also really worried about what will happen when he goes back to school. They are still on holiday till Monday so the school knows nothing about it till then. It will be a real struggle having to drag my toddler up to school at lunch time every day to give my son his injection and I am also feeling a lot of anxiety about the idea of him being out of my care while at school and worry he won't be monitored properly, etc.

    Also he has yet to have a hypo and I am feeling really panicked about it happening and worried something severe will happen to him. I feel like I will never have a full nights sleep again. Please tell me this anxiety will subside, I can't go an like this.............. Any advice or experience would be much appreciated.

    Thanks,
    Jayne
     
  2. jack412

    jack412 Type 2 · Expert

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    The anxiety will subside, but it won't be this week. You had your plate full before the T1 diagnosis and it's going to take a while for before it's just a part of your daily routine. You are now probably doing better than you think you are.;)
     
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  3. donnellysdogs

    donnellysdogs Type 1 · Master

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    Hasn't your DSN offered to go with you to school? I know of at least 1 child whose DSN went to the school to advise...




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  4. nannyg123

    nannyg123 Type 2 · Well-Known Member

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    Hi Jayne
    I work at a school and we have a couple of diabetic children. At least 3 members of staff have received training from the DN so they can administer insulin meaning that parents don't need to come to school during the day. We also have a fridge specifically for snacks/insulin etc and work has been done with classes so other children know why diabetic children need snacks and medicines. Speak to the school as soon as they return after the holiday and hopefully they'll have some reassurance for you. The DN should also put together a care plan so school know how to deal with things. Good luck. Debbie


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  5. donnellysdogs

    donnellysdogs Type 1 · Master

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    It is natural for us to feel overwhelmed.. Especially parents as you so want the best of everything for your children. You have a lot to deal with. I am appalled that your dn never talked to you prior to the weekend. How are you managing?


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  6. teen-girl

    teen-girl Type 1 · Member

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    Its perfectly normal for him to be very hungry after being diagnosed. After I was diagnosed I would cry I felt so hungry sometimes! Try eggs if he likes them, they have no carbs and you can cook them in so many ways so he doesn't get, maybe a ham and cheese omelette etc
     
  7. jojojojo2012

    jojojojo2012 · Member

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    Oh you poor thing. I have an old child on the spectrum and my youngest is t1 he is 6. He was hungry all the time before dx and after but it does get better. Are you carb counting? This make it so much easier to fill them up at meal times by matching the insulin to what they eat, meaning they can eat what and as much as they like. My ds is still scoffing Easter eggs. We only dx in feb so still learning, I grieved for weeks and still get sad, and also husband out long hours of day. Don't worry about school yet take one day at a time and get your head round it yourself until then school can wait, and your nurse will Go into school and speak to them explain etc. also I panicked about hypo..... Honestly don't! When the first 3.6 came up I was like right lucozade biscuit lets go, and then he was back up and that was that! I was like was that it??? No drama he was fine all he said was he was hungry! Nothing new there. Big hugs.


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  8. nancy57

    nancy57 Parent · Member

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    Hi Jayne,

    My heart goes out to you and your family. I can't believe how much you are having to cope with on top of diagnosis. You sound as if you are doing incredibly well under really difficult circumstances.

    My son, 4, diagnosed with T1 on the 31st Jan and I feel that we have just got to the stage where we are able relax with this as part of our lives. I thought it might help if I shared some of my experiences, as sdo many things you are going through sound familar.

    When newly diagnosed, my son was also constantly hungry. Being on a basal/bolus regime meant that we could really feif him as much as possible during mealtimes but this seemed to make no difference, he was always hungry. He snacked on cheese strings, home made turkey burgers and meatballs, chicken legs, omelettes, jelly and the odd carrot stick.

    Also his levels were in the teens for over six weeks, even though we were told that they should be within the normal range within 10 days. Apparently, regardless of constant tweaking in terms of his ratios, we were told it takes as long as it takes, and had nothing to with me miscalculating his carbs or not injecting correctly. Something I was constantly worried about. Hypos were something we didn't have to worry about for a long time, but now if I think my son's levels may be low. I check his blood sugars and a box of raisins or some apple juice does the trick. We have been told that as children are always with adults its very unlikely that they will have a severe or dangerously low hypo as someone always spots the signs and corrects before it gets to this stage.

    With regard to school, your DSN will go into the school and help train staff. It may just take a while to get everything in place. My son moved from school dinners to packed lunches to make the carb counting easier, and was given his nova rapid once lunch was completed in order to ensure the insulin dosage matched what he ate. The school called me whenever they needed for advice and I was lucky that my work were very flexible.

    I am sorry I do not know anything about CAHMS, but was wondering if your DSN can help you move up the waiting list considering how the diabetes is affecting your life.

    My son has been on a pump for the last four weeks, which has transformed our lives once again. It has been another steep learning curve but definitely a move in the right direction as we no longer inject and normal snacking is now the norm. I hope this is an option available to you.

    I hope this helps, it does get easier eventually, you will get there.
     
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  9. vslater87

    vslater87 Type 1 · Member

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    I feel the same my daughter was diagnosed 3 days before her 2nd bday December last year! We have been up an down and now talking about a pump for her any advice on the pump?? It will get better it has too xxx

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  10. ConradJ

    ConradJ Type 1 · Well-Known Member

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