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He needs some help!! Can you help me??

Discussion in 'Parents of Children with Type 1' started by concernedauntie, Oct 16, 2010.

  1. concernedauntie

    concernedauntie New Member

    Oct 16, 2010
    My nephew who is about to turn 3, blood sugar can range from low 600 to low 30s any given day. Yesterday his number was 600 at dinner time. Then within 2.5 hours and 3.5 units of Novolog he had dropped to 64. At that time he complained of his stomach hurting and telling everyone he felt "low." Can you please explain to me what this is doing to his body from going that high to that low.

    His parents (my brother) do not seem to think it matters. They say that I am more upset about it then he is. But, I have been watching the extreamly highs to real lows for about 6 months now, and watch how he looks and shakes. I have been doing lots of resaerch on the internet and on searching CWD, but cant seem to find anything about what it is doing to his body so his mom and dad can see what they are doing. Hopefully they can make a change.
  2. virgo39

    virgo39 Approved members

    Jan 8, 2010
    I am far from expert on this, but there are many on this board who can help if you provide whatever information you have.

    What kind of insulin is he on?

    Do you know how much insulin he gets and when?

    How old is he, how much does he weigh, etc.
  3. Amy C.

    Amy C. Approved members

    Oct 22, 2005
    The child's parents need to give insulin to match the food eaten. In the case you described, the child received too much insulin which is why he went low. He started high because he didn't receive the insulin at the right time -- usually when eating.

    The parents probably didn't give the right amount of insulin at the right time.

    It is challenging to keep the balance of insulin and exercise, which lowers the blood sugar with food and hormones that raise the blood sugar. Most have been educated by the endo's office on how to do this. This involves testing 6 or more times a day, counting the carbohydrates and being sure there is adequate insulin for the carbohydrates consumed.

    You haven't said which insulin your nephew is taking, but most need a long acting insulin taked once or twice a day along with a fast acting insulin for most meals.

    It takes a couple of hours to bring down a high like that, but 2.5 units was too much in this case.
  4. concernedauntie

    concernedauntie New Member

    Oct 16, 2010
    I would love the help!!

    He is on Novolog and Lantis

    He usually gets 2 units of novolog 3 times a day during meals, if his numbers are good, and 3 units of lantis every night. They dont check him during the night.

    He is turning 3 at the end of the month. He weighs 40-45 pounds. His eating habits are horrible, which they also seem to think doesnt matter, because they can give him shots to compensate for it. He is very active, like any normal 3 yr old.
  5. LittleGuy'sMom

    LittleGuy'sMom Approved members

    Jan 22, 2010
    How long ago was your nephew diagnosed? Is he on a fixed number of carbs for every meal? My ds will be 3 very soon and using your nephew's dose of 2u Novolog per meal, my ds would have to eat 50 carbs at breakfast, 64 carbs at lunch and 90 carbs at dinner. Also as comparison, my ds is about 38 lbs and very active. He gets about 5.5u of Novolog as bolus for the entire day. I can't imagine what 3.5u would do to him in 2.5 hours.
  6. StillMamamia

    StillMamamia Approved members

    Nov 21, 2007
    Although I appreciate and respect your concern, I am not sure how all this info will help your nephew and his family. Are you taking care of him regularly?? Or are you going to pass the info on to them??

    My best advice would be to guy them a couple of excellent books:

    "Think Like a Pancreas" - Gary Scheiner
    "Using Insulin" - John Walsh
    "Type 1 Diabetes in Children, Adolescents and Young Adults" - Dr. Ragnar Hanas (to be used like a reference book, VERY useful).

    Perhaps it is for you to learn more, and that is commendable. However, I think there are so many new things to learn that the parents may feel overwhelmed, on top of the great sadness, anger and all the emotions which come from finding out your child has been diagnosed with a life-long chronic disease. On top of that add unpredictability, the willingness to do one's best but perhaps not having all the knowledgat once (and it really is a process in itself). And then the honeymoon period, which can sneak up or hit you in the face, and leave just as fast or as slow.

    Again, seeking knowledge is good, but I would encourage a bit of gentle pushing to seek more knowledge on the parents' part. They need all the support they can get, especially in the beginning.

    Another thing you may want to give them, if you want, is a blood ketone meter with the respective blood ketone test strips. The Precision Xtra is one.

    If I may suggest another book, is "The Glucose REvolution". There are several kinds out there, but I'd suggest the basic one.

    Approaching this in a different way would probable be more productive.:cwds:

    I also don't test every night.

    ETA - all of the above books are available through Amazon, so easy to order and get them delivered. :)
  7. Mom264

    Mom264 Approved members

    Mar 17, 2009
    What brand of glucometer is he using?
  8. czardoust

    czardoust Approved members

    Oct 16, 2007
    First of all, how many times a day is he being checked? (blood sugar)

    He needs to get his blood sugar checked at least 10 times a day at his age because:
    • Novolog only lasts 3 hours and he may be having highs without food during times he is not being checked.
    • When he is given Novolog, the parent needs to find out if he is responding too much to it and dropping too low as a result. If heis, this could mean one of two things - either he needs less Novolog per carb at every meal, or he needs less Lantus.
    • He needs his blood sugar checked at night to see if the night time Lantus dose is causing unseen lows - I cannot fully EXPRESS to you the importance of that.

    Katerina was three when she was diagnosed. Three is a very dangerous time to be Type 1 Diabetic. Kids are growing so hard and so fast, and changing so much, that nothing stays the same for longer than 1 day some times - least of all how much insulin they need. One day it can be 1 unit of Novolog per 15 carbs and the next 1 unit per 25, the next 1 per 5.

    Another thing to consider is, how long has this child been type 1diabetic? A year, a few months, weeks, how long? Because most children go thru a time at the beginning where they need less insulin. Its called a "honeymoon" and giving them the "normal" amount of insulin will result in constant lows.

    Your post makes me scared for this child. Please respond back with an update.:(
  9. concernedauntie

    concernedauntie New Member

    Oct 16, 2010
    He was diagnosed at 15 months. I intend to help them as much as I can. I ordered him the bag of hope, which I figured would be a good start to them wanting to learn more. They have the attitude that they have learned what they "need to know". They seem to have no want in learning more. So, I am here looking for them. I posted today because I feel I dont have the right answer, and am hoping for some help for them. They are very young still 21 and 22. Yes, they do have lots of emotions and I am very aware of their feelings. I just feel that if I had the right info, they would want to listen and learn more themselves. So to ask again, can you tell me what, in a very general way, what the highs and lows could be doing to his body?

    Thank you so much for all the replies! I always come here first when I have a question and always seem to find the answer! :)
  10. czardoust

    czardoust Approved members

    Oct 16, 2007
    I feel like I could help you with that because I was the worst at thinking I needed to learn more because I didn't know what good control was until I came here.

    Examples of what highs over a long period have done to my daughter:

    • Pyronephritis at age 6, thats acute kidney degeneration, its worse than a kidney infection, its extremely painful and the treatment is a disgusting huge shot of something yellow with a moby dick harpoon needle in the kidney.
    • High pressure in her eyes which is glaucoma, age 6, thankfully reversed with better management of blood sugar which requires getting serious.
    • Open sores on one of her feet, age 8, thank God caught early enough to not require hospitalization, but treated at home with a betadyne foot soak for 3 days.
    • Cataracts. Age 9. Granted this could be because of both highs AND lows, but cataracts none the less.

    Examples of what lows can do:
    • Poor circulation in the feet resulting in tingling feet/bee sting sensation. <~~~ cause was too much Lantus.
    • Seizure age 3, three of them at age 7, the last was two days before her 8th birthday. All of them happened when blood sugar was in the range of 20 or below, and ALL OF THEM AT NIGHT when the house was sleeping. And this when I was checking her twice every night! Its nothing but a miracle thats she is alive today.

    What are those critical ages? Times of massive amounts of growth. Times of extreme bodily change. The next hurdle coming for her is puberty. My mom (also Type 1 Diabetic) has warned me of that.

    Wanted to add:

    A age 2-3 there really is no such thing as a eating habit or specific time of eating. They graze because they are toddlers. Always growing and hungry and then some days not wanting to eat anything. That part is normal. That's what makes good management so hard to achieve. I'm sure these parents are trying their best with the info they have been given. I can't judge anybody (trust me, the last one who can is me) but it sounds to me like these parents have not really grieved over their child being diagnosed and having to live with this. You have to go through all the anger, hatred, bitterness, regret, sadness, mourning, questioning why, and then finally just accepting this as the new "normal" way of life before you can ever be serious about attacking this head on every day, consistently, forever. Grief has no time frame of course, and it can cycle..... but there always comes a day when realization hits you and you change your attitude. Then things get better.
    Last edited: Oct 16, 2010
  11. Becky Stevens mom

    Becky Stevens mom Approved members

    Oct 14, 2008
    My son was diagnosed at age 3 and is doing very well with diabetes. The younger a child is the more care to avoid severe lows is necessary. Your brother and SIL may not feel that these things are important but their endo team should be stressing the importance on them. If your nephew was diagnosed at age 15 months then this is not something new to them. I know its difficult, Ive been there but they have to step up to the plate and start managing his diabetes better. He cant do it himself yet. Ask them if they would be interested in coming here and talking to all of us
  12. Kimby

    Kimby Approved members

    Jan 18, 2010
    If the insulin regimen is wrong, they really need to contact their endo. On the other hand, I have a child with lots of variability too. I've called in numbers often to which I too often heard the nurse reply, "I can't make any changes, because there isn't a pattern. Call again in two days." His last A1c was 7.3, so everything isn't horrible. Still, he is high & then low or borderline low OFTEN. It's not that I don't care, and family telling me all the horrible things that could happen won't help. It might make them pull away when they and your nephew really need your support. I second the idea of ordering good books for them, & encouraging them to take advantage of their endo's support, but not trying to scare them. I'm sure they know what can happen.
  13. concernedauntie

    concernedauntie New Member

    Oct 16, 2010
    I was nervous to post today for several reasons :

    1-being his aunt and not his parent
    2-being treated like I dont know anything or have any common sence

    I am here to learn! Each time I come here, my confidence builds by learning some extra peice of information and I get to take it back to them, and in turn, builds them as well.

    I love to continue to learn! I know that it is probably hard to tell of the more difficult times that it takes to get to where you all are, but it truly helps! Thank you!

    Czardoust-Good luck with your daughter in the next hurdles of life! Thank you! :)
  14. selketine

    selketine Approved members

    Jan 4, 2006
    I just wanted to say welcome to CWD - it is really hard dealing with this disease in a young child. My son was dx'd at 26 months so BTDT.

    I am just curious what meter is being used since I've not seen one that would read over 600?

    I think you've gotten great advice so it is hard to add to it. I think if you could come to a Friends for Life conference - either just you or with the family - you would love it and learn a lot. The FFL has a separate program for grandparents and care for children with type 1 (even the little ones) by CDE's etc. so the parents can attend the sessions.
  15. frizzyrazzy

    frizzyrazzy Approved members

    Dec 23, 2006
    I didnt' think that any meters read over 600. Is there a new one on the market that reads that high??
  16. kiwiliz

    kiwiliz Approved members

    Sep 25, 2008
    I am glad you joined up. It sounds as though your nephew needs an advocate. It is a very trying thing having a child with diabetes and must be very difficult for this young couple. One thing you could tell them in addition to the previous, very helpful, posts is that being really high or really low feels terrible for children. I am sure they do not realise how horrible it is because your little nephew is just too young to put into words. When you are high you feel like you are going to be sick, your head hurts and your tummy hurts as well. Your eyes go blurry (and this actually causes a temporary coating on the lens - which will harm his learning potential when he wants to learn to read),
    When you are low you feel dizzy - really really dizzy - and frightened. Even big kids can feel frightened and if it happens at night it is like a nightmare. If it is a really bad low they can fall unconscious - and you wouldn't know. It is like they are just sleeping.

    Everyone experiences highs and lows a little differently - but this is the usual way you feel. No one would want their child to feel like that. I am sure when they realise what it is like they will want to learn how to manage better. If they are giving the same amount of insulin at the same time of the day they also need to give him the same amount of carbohydrate and deduct a bit of carb or add a little extra insulin if he is high. His endo would calculate that for them or they could log his numbers and the amount of food he eats and someone here could give them a good idea about what to change. They would need to weigh his food and make a note of what it is. Do they understand that it is the carbohydrate in food that raises blood sugar?

    Welcome again. Liz
    Last edited: Oct 16, 2010
  17. SueM

    SueM Banned

    Mar 25, 2010
    Personally, this is a tough one for me. I believe that your intentions are pure and you are a good auntie :) ... At the same time, sometimes family members who are not there every single day and who are not there for all the blood sugar checks... tend to think that they can make judgements on the parents' ability to take care of their own child. I say this with respect, but I have dealt with it in my own family. I love my mother but if she's at my house and my daughter is over 350 (as an example), my mother tends to flip out and ask me "Well, why is she so high"? "What did she eat"? What's going on"? Etc, etc.... From personal experience, it gets old. Quickly.

    Now if it's true that his parents do not seem to think that it matters... then, you may be correct in worrying... Certainly, it can't be good for the little boy to be HIGH and then be very low on an ongoing basis... (of course it happens to the best of us on occasion....) :) It's just difficult to give you advice not knowing what the real situation is here. It could be that your "perception" of what is going on is different from the "reality" of type 1 diabetes. Or, again, you may be justified in your concern. Tough one.... Good luck!
  18. MichS

    MichS Approved members

    Dec 9, 2008
    I agree with this post very much. My initial thought when i saw op message was that it is IMPOSSIBLE to understand diabetes unless you live with it. So - if she is here to learn and not judge the parents then I think it is very good! But if you are here to learn and offer support then that is good.
    BTW - I don't disagree with night time testing, but not EVERYBODY tests every night. I personally, only test my ds son at night when something is off - more exercise, lows or highs close to bedtime, or insulin changes. I think it can be good to test every night, but it my case sleep makes me a better parent during the day.
  19. PrimAdonna

    PrimAdonna Approved members

    Sep 4, 2010
    Even with family members that do have knowledge it can be a struggle.

    My mother-in-law has a grown son that is T1. After telling her our treatment plan for lows (give 15 carbs and retest in 10-15 minutes) she said, "If I had done that he would have died!"

    Now she is very concerned that we are not following the "proper plan". She has made sure she has informed the entire family that we may be responsible for our son's death the next time he has a low. And she has told our son how to "properly" care for a low himself :mad:

    So as you can see many people here are hesitant to give advice to anyone other than the primary care giver. The best thing is to assume you are telling it like it really is but even that is scary.

    I hope you understand:) I wish you the best of luck.

    Would it be possible for them to read this forum? Can you print off some of the threads dealing with very young children?
  20. Gaia

    Gaia Approved members

    Jan 18, 2008
    Joeys actually reads HI at 600 or above. I believe you can set them at a certain number to read as HI or LO

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