- advertisement -

Parent of a newly diabetic 15mo old~NEED ADVICE

Discussion in 'Parents of Children with Type 1' started by slaveofchrist, Oct 19, 2012.

  1. slaveofchrist

    slaveofchrist Approved members

    Joined:
    Oct 18, 2012
    Messages:
    7
    Ok, long story but, my 15mo old DS has Down syndrome and we went to the endocrinologist for routine check up and some blood work indicated that he may have Type 1 diabetes. So, we were sent a Freestyle meter and were told to check his blood sugar one hour after he goes to bed and it should not be above 200. The first night we checked it (October 5th), it was high so we called his doc and he said to check it in the morning before breakfast and two hours after he eats. Both of those reading were fine but then we checked it again before lunch because he was not acting right, and of course it was high. So, then we were sent to the ER and eventually admitted. We spent one night there and while we were there they gave him one dose of insulin. His sugar then went down to 66 so they gave him some juice and it was fine again. Since then his sugar was fine so they sent us home with emergency insulin (without teaching us how to use them yet) and ketone strips. He said that the one dose of insulin can give the body the kick it needs to keep working. So then we were supposed to be checking it nightly and his ketones daily and all has been fine (other than a few that were right above 200 and one that was low). Anyways, last night he was acting strangely snuggly so I took his sugar and it was 308. The doc said it could be caused by stress and to check it when we got home (we were at church). We checked it there and it was 318 so I called again and they just said to keep an eye on him all night and to check it before meals today. All day has been below 200 but it was still higher than usual for him. Tonight, my husband went to check his sugar before we went to bed like usual and it was 345! We are still waiting to check his ketones (his diaper is still dry) but I think his mouth smells a tiny bit like acetone. I of course called the doc again and he said to just do the same as last night. What do you guys think?? I am kind of freaking out (we live an hour from the doc and a good childrens hospital). I know the acetone can be a really bad sign. Do you think my doc is handling this properly? :confused::confused::confused: Any advice would be appreciated! Thanks for hanging in there and reading the whole long story!
     
  2. Dan

    Dan Approved members

    Joined:
    Nov 8, 2009
    Messages:
    371
    I am sorry to read that you found us :(....but I welcome you...:cwds:

    Personally I would take the Drive to the Children's hospital you mentioned. I assume that the advice that you are getting is from a regular pediatrics Dr.

    Blood sugars over 300 are going to give your son Ketones. This is the process of your body converting the use of Glucose to using Fat as a source of fuel. The byproduct of this process is Ketones. Ketones will give you that fruity smell that you mentioned. If a child gets a very high level of Ketones he can go into a state of Ketoacidosis which is not safe.

    The fact that they gave you insulin and never trained you on how to use it is complete negligence. I spent 2 weeks in the hospital when my son was diagnosed.
     
  3. slaveofchrist

    slaveofchrist Approved members

    Joined:
    Oct 18, 2012
    Messages:
    7
    Thank you! Ok so my concerns are not way out there then. I think I forgot to mention the Weds night he did throw up a tad bit. I have been checking his ketones in his urine, does it make a difference to check the ketones in his blood? And I have been talking with an pedi endocrinologist, but I am not so sure how concerned he is. :cwds:
     
  4. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    Uhm, were do you live? That is very very atypical of what a newly diagnosed parent/child would be receiving, especially at both the pediatrician and the ER. When you say high, how high?

    I hope you guys get the help you need!

    ETA - don't know how I missed the Blood sugar readings first - sorry! Yes - your son's blood sugar is too high and yes - this should be treated as a medical emergency. You should now be in the care of a pediatric endocrinologist and at a hospital learning everything you need to know about managing your child's blood sugar.
     
  5. slaveofchrist

    slaveofchrist Approved members

    Joined:
    Oct 18, 2012
    Messages:
    7
    Ok thank you. We arrent getting anywhere talking to our endo so we are ended to the pedi (she is a really great doc) and hopefully she will send us to the hospital or AT LEAST teach us how to use the insulin :cwds: We are always packed to go to the hospital and I just want this roller coaster to end! Does it matter if the ketones are checked through his blood or urine????:confused::confused:
     
  6. maciasfamily

    maciasfamily Approved members

    Joined:
    Feb 15, 2012
    Messages:
    235
    Agree. It's not normal for a non diabetic child to have blood sugars that high on a regular basis.

    Go to the Children's Hospital if you can.
     
  7. GaPeach

    GaPeach Approved members

    Joined:
    Dec 29, 2007
    Messages:
    2,218
    Adding an AMEN! It will be worth the drive to have a complete evaluation. Time is essential in getting to the bottom of the high blood sugars.
     
  8. danismom79

    danismom79 Approved members

    Joined:
    Apr 21, 2008
    Messages:
    5,300
    "Emergency insulin" is the oddest thing I've ever heard. You need to take him back to the ER now.

    ETA: And try to get a different endo.
     
  9. Jason's mom

    Jason's mom Approved members

    Joined:
    Jul 19, 2012
    Messages:
    77
    So sorry you're all going through this. Your mom instincts are right on. Take him to the ER.

    My son is 19 and also has Down syndrome. I'll send you a private message. I'd love to visit with you if you'd like to talk - anytime.
     
  10. nanhsot

    nanhsot Approved members

    Joined:
    Feb 20, 2010
    Messages:
    2,626
    I would either drive to a PEDIATRIC emergency room right now or get an appointment TODAY with a pediatric endocrinologist. Having insulin on hand without education is very dangerous, IMO. We live an hour from our nearest/best children's hospital as well, but I won't go anywhere else. Good luck and don't wait please.
     
  11. Meredithsmom

    Meredithsmom Approved members

    Joined:
    Oct 14, 2009
    Messages:
    204
    Prayers to you. Trust your gut. And find someone who will listen to you.
     
  12. danismom79

    danismom79 Approved members

    Joined:
    Apr 21, 2008
    Messages:
    5,300
    There's some old "safeguard" in place, so only your first post was showing for a while. Urine ketones are a couple of hours behind blood ketones. The vomiting is a bad sign. Please go to the ER.
     
  13. tiger7lady

    tiger7lady Approved members

    Joined:
    Sep 14, 2010
    Messages:
    344
    It takes a bit of time for the ketones to show up in urine. I can't remember the exact time frame but I think about 2 hours from the time they show up in blood. So to answer your question - blood ketones will show up on a blood ketone meter way before urine ketones will show up. There are plenty of people that still use urine ketone strips to test. It's just a matter of how accurate you want/need to be.
     
  14. miss_behave

    miss_behave Approved members

    Joined:
    Aug 28, 2006
    Messages:
    2,217
    Please go to the children's hospital ER now. The care you have been given so far has been extremely negligent. If your son has Type 1 and is not treated with insulin, his blood glucose levels will continue to rise and eventually lead to diabetic ketoacidosis, a medical emergency.
     
  15. Jason's mom

    Jason's mom Approved members

    Joined:
    Jul 19, 2012
    Messages:
    77
    You've gotten lots of responses urging immediate medical attention - and they're true. I just wanted to add that your son will be fine (and so will you and your husband). You simply need good medical advice and proper treatment.
     
  16. GaPeach

    GaPeach Approved members

    Joined:
    Dec 29, 2007
    Messages:
    2,218

    Looks like you will have a great supportive resource in this mom. Gotta love this forum!
     
  17. slaveofchrist

    slaveofchrist Approved members

    Joined:
    Oct 18, 2012
    Messages:
    7
    Thanks everyone! We went to speak to our pedi who is GREAT and she ALWAYS listens to our concerns! She thought it was really strange that they did not teach us anything before the discharged us at the hospital. She completely understood all of our concerns and called the endor for us. We now have a diabetic educator that is calling me shortly to discuss all of my concerns and when exactly to call 911 or head there or keep checking. Right now we are checking his sugar before every meal and sleeping in the same room as him. His sugars during the day have been below 200 so our pedi says that's why they haven't started him on insulin yet but she says it will be really soon. She did say that when that time comes they will admit us into the hospital and teach us everything. Im just so worried cause we barely know anything right now. Oh, and I think I forgot earlier to say where we live. We live outside of Savannah, Ga. Thank you guys for your support!
     
  18. danismom79

    danismom79 Approved members

    Joined:
    Apr 21, 2008
    Messages:
    5,300
    Did you let her know he'd thrown up, has ketones and an acetone smell to his breath? Because that's not an "ok, hold on" situation. I know you love her and all, but your boy is really young and things can go bad fast. "We'll let you know when to call 911" is scary.
     
  19. slaveofchrist

    slaveofchrist Approved members

    Joined:
    Oct 18, 2012
    Messages:
    7
    His ketones have been negative, not even a trace yet. Our endor said that when he has ketones he wants to see him.
     
  20. Beach bum

    Beach bum Approved members

    Joined:
    Nov 17, 2005
    Messages:
    11,315
    Please, please, go to the ER. Preferably a children's hospital. The numbers your child is experiencing are not normal, nor is the vomiting and acetone smell to his breath. I don't mean to be an alarmist, but I'm going to be. This situation can turn dire in an instant.
     
    Last edited: Oct 19, 2012

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice