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Son Diagnosed Type 1 12/26/2011

Discussion in 'Parents of Children with Type 1' started by FearTheRedQueen, Dec 31, 2011.

  1. FearTheRedQueen

    FearTheRedQueen New Member

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    My son Alex (7yrs) was diagnosed with type 1 on the 26th. He only spent two days in the hospital; we discovered the diabetes before the keytons could make him sick. I'm honestly very worried about him. I've been reassuring him, that this is not a punishment and it will not hold him back from his life plans (he wants to go to Yale and be an Engineer, wish I had my life figured out at 7! Hehe) but he suddenly seems very depressed which is out of character for him. He keeps saying things like why did this happen to me, it's not fair that no one else has to have shots before they eat, but more than that he's been refusing to eat. I think he has it in his mind if he doesn't eat he doesn't need insulin. I've been trying to explain to him that not eating is just as dangerous for him as not taking insulin. We were out this evening and we stopped at a restaurant to eat, he kept telling me he wasn't hungry so I didn't push it his blood sugar was on the high end of normal. When all the food came out he welled up in tears and cried for almost 1/2hr that he was starving, and wanted to eat but didn't want to take the shot. He said he would rather die than deal with this, to make matters worse my Dad passed away December 5th from a yearlong battle with lung cancer, and he and Alex were very close. He has also been saying things like "I just want to die so I can go be with Papa and not have shots anymore." I don't have much experience with really any of this, is it possible for a child who has no mental illness to become suicidal? I don't think he's going to hurt himself, he doesn't know anything about suicide, heck he just learned about death a few weeks ago. I'm just super worried about him. Not really sure what to do. He has to go see his Doctor on Wednesday I'm going to bring it up to him. I don't think he needs medication or anything, maybe to just meet some other kids who have type 1 like him. I'm very open to any thoughts or suggestions.
    Thanks, Kristina
     
  2. bnmom

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    Sorry for what you are going through and that your little guy is having such a hard time right now.

    I agree with you that if you can find a way to get him around other kids - or adults - with type 1 it will probably help quite a bit. Maybe check with your local ADA or JDRF offices and see if they can help with hook ups. There are a couple other D kids in my son's school and I know he felt a lot better after talking with them. You can also google lists of celebrities and athletes with type 1 - share it with him so he knows he is not alone and that he can do anything he wants in life. D doesn't change that.

    Also, not that you can do so anytime soon - but I would HIGHLY recommend sending your son to diabetes camp this summer. That is an experience that is worth its weight in gold.

    Definitely bring it up at your appointment - the endo should have plenty of experience with helping kids adjust to diagnosis and may have a counselor to help as well.

    In the meantime, maybe focus on allowing him more "free" foods for a while to minimize the number of shots he has to take (ie meat, cheese - foods without any, or very few, carbs so no insulin is required.)
     
  3. rebesser

    rebesser Approved members

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    Dear Kristina

    I was just surfing the forums and came across your post and really felt your pain and wanted to reply. Diagnosis is a big deal. Children may initially take it on board, and even in their stride, but at some point (now for Alex) all will question, why me? become angry, resentful, rebel, then hopefully work it out and get resolution, much like the stages of grieving. Parents often initially despair, blame themselves and feel overhwelmed. Alex is right - having diabetes is not fair, others don't have to have shots before they eat. In many ways his reaction is normal. I often find that acknowledging a child's feelings can be helpful. For example "I can understand why you feel it is a punishment. You are right, having diabetes is not fair". It is important to let Alex vocalise his feelings to you, and for you to be there for him. You can be sad together, but you will need to be his solid rock and allow him to outpour his grief, so he doesn't feel that he has to protect you from what he is feeling.

    Coping with a double bereavement so close together (your dad and your sons diagnosis) sounds overwhelming. Do you need some help with helping you and your son to cope? You may need some extra support right now and your doctor should be able to put you in touch with the right person. You may also want the doctor to explain to Alex how type 1 diabetes happens - the autoimmune destruction of his beta cells, causing insulin deficiency. Would Alex like to meet someone else with diabetes? It may help him feel less alone. If he does you could ask the hospital if they could put you in touch with another family who's child has type 1 diabetes.

    I would strongly discourage you from letting him miss injections. This is one rule that must never be broken. This may sound tough but you do not want him to think that if he kicks off he can miss a shot.

    Be reassured, you are not alone, and you will find support from other parents on this site. As for me, I was diagnosed aged 9 and am 35 years old now and doing what I want to do. Life with diabetes is not normal, and not the same as others. But life with diabetes can still be happy, exciting, adventurous, fun, fulfilling. There are new routines that you and Alex need to get used to.You both need time, and maybe some support in the meantime.

    What does Alex like to do for fun? Can you do some of these and that will show him that it is still possible to carry on with the things he enjoys and have diabetes.

    Hang in there.

    Best wishes from the UK,

    Rachel
     
  4. Amy C.

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    This is a tough situation to be in and the previous posters have good suggestions.

    I agree very strongly with that fact you should never allow your son to skip a shot -- it makes it seem that he doesn't have to take shots, when he needs insulin to stay alive.

    I would make sure that shots are given in a matter of fact manner and as quickly as possible -- it shouldn't take more than 10-15 seconds of his time. Be sure that you are doing all the steps -- all he has to do is receive the shot. He has to have at least one shot a day of the basal, but none of them should be negotiable.

    There may be support groups in your area where kids with diabetes gather, but camp is a great way for him to learn he isn't alone. The endo may know of groups in your area, but I would contact JDRF to investigate yourself.
     
  5. lgouldin

    lgouldin Approved members

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    My DD went through the depressed stage (never said she wanted to die) but was depressed (cried a lot and wanted to be "normal" again). She didn't want to check BG and didn't want to take shots. We also didn't know anyone else with type 1, then when school started she got to meet 3 others.

    Maybe the Endo's office can get him someone to talk to about his feelings.

    We came up with games about it like Guess your BG before we take it and Lets see how good Mama is getting at giving shots (you play your game or watch TV don't look at me and see if you still feel the shot). We pricked our finger along with her only her pricker was set at 3 and she would set ours at 7 (that would make her laugh every time). Guess the carbs and a whole lot of Lets see what this does to you BG (Trampoline, a package of smarties, bike riding, stuff like that). She was amazed how fast her BG dropped on the trampoline. I found I could make a game out of just about everything!

    We didn't let her miss shots.... she was so hungry after diagnosis, all she wanted to do was eat.

    Do you use pens or syringes for shots? We use the pens and she said "at least it's not like the the big doctor shot".

    Best wishes to you and your son...I know it feels overwhelming but it will get better!
     
  6. OSUMom

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    I'm sorry for your son's diagnosis.

    There are lots of type 1 diabetes role models out there living their dreams. Jay Cutler/NFL, Kriss Freman/cross country skier, Gary Hall Jr./US Olympic Gold Medalist in Swimming, Adam Morrison/basketball player, and many more. Type 1 diabetes will not stop him from going to Yale and becoming an engineer. I'd share with him people in the media or non-celebrities (like our kids) who are living their dreams. I feel like he needs to *see* how this will not affect his future.

    Wishing you all well.
     
  7. nanhsot

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    I'm glad you found these forums, though welcome always seems strange to say, it's good to have this resource.

    My son went through a bit of a dark period initially, diabetes camp was what really helped the most. My advice now is to call your local JDRF or other organization (the endo's office should be able to help) and get him hooked up with other T1s NOW. Our local office has support groups and I have told them I want to be contacted for any teens in my area needing support, etc. You might see if there is a diabetes camp local to you and contact them, they likely have resources/people they can contact.

    Just seeing the normalcy of life and eating and shots helps, and just knowing they are truly not the only one.

    Now, I would NOT let him skip shots as others have said, but I WOULD stock my home heavily in carb free foods. Let him know that shots are still needed for big meals and for his basal insulin but that there are foods he can eat at will without needing a shot. There are many threads here if you do a search on "free foods" or something similar, or we can help you again. After diagnosis they literally ARE starving as their bodies try to normalize, my son ate non stop for 2 weeks it seems. Having lots and lots and lots of foods he could eat without a shot helped. I wouldn't present it in a way that makes it seem like he can eat these foods ONLY, as they clearly are not a balanced choice, but let him know there are foods he can eat without a shot.

    In these early days eating is pretty important as his body has been in a literal starvation mode for a while.

    In the hospital I loved how the initial approach was one of "your life will be normal". He could call the dietary department at ANY hour and order ANYTHING. He got nachos at 2am. :p He came home to a SuperBowl Sunday party with more junk food, so we kind of got thrown into the fire on day 1!! While stressful for ME, I think that actually helped him.

    Start educating him on pump therapy. Find someone with a pump and show him how soon he will be able to get one shot every few days instead of every meal. Make sure he knows there are options out there instead of shots. You might even consider talking to your MD about i-port or similar products, there are others I can't recall the name of but essentially you can give all the insulin into one site similar to a pump, but by injection.

    I'm sorry your son is struggling so much. Keep us updated, there is a wealth of experience here and much much empathy. You are not alone and neither is your son.
     
  8. selketine

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    The first few days and weeks are the most stressful. My son was dx'd at 26 months so I didn't have to go through the "negotiation" phase as you would with older kids.

    If you feel like he is too young for week long stay at diabetes camp and/or you can also consider taking him to one of the CWD conferences. They hold small ones throughout the USA and the big one is in Orlando in July (check their website). They have excellent children's programs and siblings are included. Surrounded by 100's of people with type 1 he definitely won't feel alone on that one. The adult sessions are fantastic as well.

    Another thing that helped us giving shots (if you use a syringe) is the inject-ease. If you google it you can find it - you put the syringe in there and it hides it - makes it easier to give the shot all around cause it hides the needles and automatically "plunges" it into the skin. My son stopped fighting us after we got this so it was a miracle worker for us.
     
  9. Debdebdebby13

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    So sorry to hear about your diagnosis, but this place is a wonderful place to start and ask the many questions you have.

    It sounds like your sweet son might need some counseling since his life circumstances have been overwhelming to him, of course, because what adult could go through all that and not struggle, much less a little boy.

    Our endo gave us some little games to play to make the bg checks and injections a little easier. First he gave us the "100" game where if he gets a nice round 100 on his bg check he would get some sort of big prize from you, going to build a bear, getting to pick a new toy, going to the movies...whatever would be a big prize for him.

    We also played the dime game for the first week or so where we gave our DD a dime every time she got her bg checked and got her injection without much drama and in a timely fashion, so she ended up making about a dollar a day, and we only had to do it for a week before it wasn't really necessary anymore. We actually ended up doing dimes during the day and quarters a night because before bed shots were hardest on her. My daughter is five so a dime worked, but since your son is a little older you might have to pay out a little more to make it worthwhile.

    The point is to reward him for making the right choice, since it is a pretty hard thing for them to actually want to do.

    Our endo also plays the 7 game with all his t1d kids. If they come in for their 3 month check and their a1c is less than 7 he gives them $20 on the spot. It seems to work, but we aren't there yet.

    The diagnosis is so hard on our kids :-( I wish none of them had to deal with something so life altering.

    Anyway, I'm not much farther ahead of you, diagnosis wise, so you might have already had games to play, but I just wanted to let you know about them just in case they might help him transition.
     
  10. Becky Stevens mom

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    Hi and welcome Kristina, bless that boy's heart:( and your's too. I am so very sorry for your loss of your Dad and now this on top of it. My son was diagnosed very young so Im not sure what others deal with when their children are older and remember what life was like before diabetes.

    As far as shots go. Does it seem to hurt him? or is he just fearful of the possibility that it will hurt him? Are you using pens for his fast acting insulin? They have very short, thin needles and they now have what are called the Nano needles which are even shorter. My son prefers the humolog shots for food in the back of his arm. We do use thighs once in awhile but he doesnt like that. We use his buttocks for the Lantus shot. You could try getting your son involved in something when its time for a shot, either a good TV show or playing with a Nintendo DS or Playstation portable if he has one or even a conversation about something he's interested in.

    He can definitely go to Yale and be an engineer. He can do anything he wants. There are many famous athletes, musicians, politicians, and Im sure engineers with type 1. My son's favorite pro football player is Jay Cutler. Jay is quarterback for the Chicago Bears and has type 1. If your son would like one of Jay's football cards. Send me your address by private message and we will get one sent right out. Steven has sent out more then 20 cards to kids from all over. He wants people to know that they can follow their dreams just like Jay did.

    I would talk to the endo about your son's feelings. Quite often they have social workers at Childrens hospitals for the kids to talk to about having diabetes or they can recommend someone for him to talk to.
     
  11. Christopher

    Christopher Approved members

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    Welcome but sorry you have to be here.

    I think what your son is going through is completely normal. I wouldn't say he is suicidal. If the behavior continues longer then a month or so, then I would have him talk to a professional. He is dealing with a horrible disease and all he can see are the endless shots and all the negative aspects right now. Over time I believe he will come to terms with this and will have a much better out look. But remember that his outlook (and yours) will vacillate over time, you will have peaks and valleys in terms of how you deal with and feel about this illness.

    When you have some time, here are a few books that you might find useful :

    Understanding Diabetes (aka The Pink Panther book)
    by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.childrensdiabetesfdn.org/publications.html

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin
    by Gary Scheiner, Barry Goldstein
    http://www.amazon.com/Think-Like-Pan.../dp/1569244367

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace
    by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover.
    http://www.amazon.com/Sweet-Kids-Bal.../dp/1580401244

    Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers
    by Ragnar Hanas, M.D. Published by Marlowe & Company, New York,
    http://www.amazon.com/Type-Diabetes-.../dp/1569243964


    Finally, in addition to the forums there is a chat room here where you can talk to other parents in "real time". There is also a kids section that you may want to check out with your son.

    http://www.childrenwithdiabetes.com/chat/
     
    Last edited: Dec 31, 2011
  12. Christopher

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    Personally, I don't think this is a good idea. There is so much variability that goes into a bg number that is out of your child's control. It also tacitly places a "good" or "bad" label on a number. But I do like the fact that it is based on positive reinforcement rather than negative.

    For me, another way to achieve this is to base it around something that is in your child's control, like testing their bg independently, or counting their carbs for a certain number of meals, etc. or whatever behavior you are trying to change.

    Obviously, if what you are doing works for your child and you are comfortable with it, then feel free to disregard my post. :cwds:
     
    Last edited: Dec 31, 2011
  13. Debdebdebby13

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    It's not so much the value on the number, just that it's in range. The reason it's 100 is because it's a nice round number, but you could play it with any number, say, 125, if you wanted.

    Our doc didn't really place the emphasis on achieving a number, it's more a lottery game of luck to give them something to look forward to when testing bg.
     
  14. buggle

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    We tried to give my son some control over the shots and a way to feel like he was doing something to deal with the pain. So, he'd tell us, "ready, set, go" to let us know when to start the shot. We'd wait patiently until he said that. Then, we'd count from 1-4 and on 5, he'd exhale out for the shot. It seemed to help him a lot, though every kid is different.

    The one thing that helped Brendan's attitude about shots, was knowing how much better insulin made him feel. He was so weak and physically exhausted before dx. So, he looked at insulin as something that gave him his life back. We always framed it that way -- as something really good that helped him to be able to play and feel strong.

    Over the last few years, he's had his low moments -- and that's normal. I think we need to let our kids feel lousy about having this crap disease. But life can be pretty good, over all, and as time goes on the diabetes tasks become less and less of a big deal and become more routine.
     
  15. Christopher

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    And also something to get disappointed in when he is not in range.

    I guess my point is just that there are a lot of reasons why he might not be in range, many of them not under his control.
     
  16. caspi

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    I agree with this. I also would be very skeptical of any doctor offering money to their patients if their A1C is below a certain #. :(
     
  17. caspi

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    Welcome to the forums. I'm sorry for your son's dx. I think your son has been through quite a lot this past month and his anger and resentment is a totally normal reaction. He is grieving for his Papa on top of all of this. I would definitely bring it up to the doctor on Wednesday, who perhaps may be able to schedule an appointment with a counselor so that he can talk about his feelings. My son, who was also dx'd at 7, went through a period of anger and sadness about 6 months after dx. This is a huge change for them and it's important they are able to talk about it. As others have said, showing him famous people with Type 1 can help. Jay Cutler is a big hit in our house as well. :D

    Good luck to you and please know you're not alone in this!:cwds:
     
  18. VinceysMom

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    Hi - my son was dx 12/26/09... we are two years ahead of you... and he is now 15 1/2...13 at dx. I agree with those who say to let your son see a list of famous folks who have T1D and how they have pursued their dreams. If you are on facebook, you can even "friend" those folks...

    I wish you and your son all the best...

    Kathy
     
  19. momof2kids

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    First of all, big hugs to you and your son.

    My 5 yr old daughter was diagnosed just over a year ago. She has needle phobia so shots have always been a huge deal. When we first came home from the hospital, my husband and I both had to hold her down to give her a shot. Honestly, it was hell. She is younger than your son, so doesn't question things quite as openly, but I try to focus on the positives. I know that sounds corny, but it really did help with her (and me). She would say "I hate insulin" and I would say "No, you don't hate insulin, you hate shots. The insulin keeps you healthy and we are so lucky to have it for you. I'm so glad I can give you this shot to keep you from getting sick." I know he won't care to hear this sort of thing and he won't magically feel better upon hearing it, but I do think it will sink in eventually and help him take a more positive view in a very negative situation.

    Meanwhile, I would say to NEVER skip a shot. With our daughter, we gave empty shots even when she didn't need any insulin. This was to establish the routine of getting a shot regardless of what she ate or not. She also avoided eating for a while after diagnosis. We would just tell her that she is getting a shot after the meal whether she eats or not. If she would go without shots for a couple days (because her honeymoon was so strong that she didn't need any insulin) we'd suffer horrible tantrums when the shots came back. So, a shot for every meal regardless of food eaten. It really helped. Of course, your son would probably be more apt to notice the empty syringe. But, you could try it.

    Mostly, I wish I could give your son a great big hug. This is so so hard and it does suck and it isn't fair. He just has to do his best with it and, as others have said, his best can be amazingly good!
     
  20. Lee

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    I do give my child a $1 for a 100 - not because it is a good or a bad #, but because it is a game. We do not aim for a 100 - we aim for #'s in range, but yes, Coco gets excited when she sees the 100. I wouldn't make it to big of a thing - those 100's add up over time!

    Also, I would be skeptical of an endo promising a reward for a good A1C as well. The endo's job is to not provide 'prizes' ad 'rewards', it is to guide you and eventually your son towards decent control. There will come a time when your son's control will be miserable, no matter how hard you and he work. How will he feel when he does not get a reward from the endo? I know that right now Coco's control sucks rotten eggs and she is extremely worried about how her endo will react. She loves her endo and has a great relationship with him and he only gives her medical advice and support. I could only imagine how awful she would feel if she lost her 'good girl' reward as well.
     

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