My daughter is nine and was just diagnosed on 1/4/2014. This has been a rough week in the hospital. While we were in her numbers were never in the normal range. We have only been home for 48 hours but are still struggling. She is always in the 200’s somewhere. When we use the ketone sticks she is in the normal range or the one right above. We then walk and have her drink a lot of water. I don’t want to send her back to school like this. I have to call in her numbers every day but have only had to do this once. Of course there are no adjustments made yet. How are you controlling keeping numbers down. She is already on a 1/12 ratio, she started at 1/15 ratio for her Humalog and went from 17 units of Lantus to 19 units per night. I want her to be in a normal range. How can I help her? Is this normal? Has anyone else gone through this?
In the first months after diagnosis it’s still possible for the pancreas to sporadically release large amounts of insulin, so her doctors may be trying to give a little cushion so your daughter doesn’t have a low blood sugar.
Also, before diagnosis your daughter’s blood sugars were probably a lot higher and her body adjusted to that, so her doctors are trying to bring her levels down gradually. Blood sugars in the 200s are okay to go to school and fuction normally. Just have her drink water. In the near future her healthcare team will increase the insulin levels and decrease blood sugars more.
The reality of living with diabetes is that your daughter will still have 200s (and 300s or above) sometimes. Perfect blood sugars aren’t possible. You can’t get upset about every out of range blood sugar or you’ll drive yourself crazy. Just try to identify and correct patterns of highs and lows.
I’m really sorry your family is having to go through this. You have to be in shock. Know that it’s going to be okay. There are some books that might help you going forward. Let us know what other questions you have. Also, if possible try to find a pediatric endocrinologist or another doctor who has experience treating type 1 children. Take care. -Jenna
I wanted to point you to another thread in the Newly Diagnosed Group where a couple of other parents of children, had recent diagnosis as well. I added a bunch of resources in that thread also.
My five year old daughter was diagnosed T1D on Oct. 7, 2013. I was also frustrated that we were not immediately falling in range after leaving the hospital. I thought I was doing everything right counting carbs, preparing healthy “free” snacks, calling in her glucose numbers every other day to the endocrinologist’s nurse, adjusting her insulin units as directed, etc… Four months later we are starting to fall just under the high range, with a few high or low counts here and there.
It is a constant adjustment, and not every day will be perfect even though you think you are doing everything right. So many things can throw a count off, too much physical activity, not enough physical activity, stress, coming down with an illness, and I hear puberty is a real roller coaster ride. We have been snowed in the past few days, and my daughter’s glucose counts have been high due to low physical activity.
This will take time, and I know how stressful it is being newly diagnosed. I was so overwhelmed. Hang in there, this will become second nature to you eventually.
My daughter, age 6, was just diagnosed a few weeks ago and we are still stressed. She is now in honeymoon phase where levels are low. When they were high, we drank tons of water and I also took her for walks around the house. I also got some hula hoops and had her use them and tried to interest her in things like bowling in the house or playing Just Dance on wii. Or crawling in tunnels or finding excuses to have her gog up and down stairs. (making sure there are no ketones of course.) We asked for a blood ketone meter also so we wouldn’t have to wake her at night if we wanted to check. For the urine ketones, I ordered some of those toilet hats to put in toilet so we didn’t have to keep sticking a cup under her. That went over much better. Also the doctors didn’t tell us about continuous glucose monitors, or Dexcom. I just heard about these and a lot of parents say they love them as it can give you alerts for lows and highs. We are talking to the doctors about this next week.
Hi Kat,
We are a few weeks ahead of you in our house. Our 9 year old daughter was diagnosed in December, and we came home Christmas Eve.
Her numbers were also very high at first. I recommend staying in close contact with your Endo so they can make adjustments. This is our first week without an adjustment. Have they mentioned whether she is in honeymoon phase?
Fast forwarding… We have not done a ketone strip since that first week as our struggles have been hypoglycemia. We now have a dexcom which has been useful to the docs in making med changes. However the unit frightens our daughter when she is low. I’m not sure what to do about that.
Every day seems to be a little different, but I feel it gets easier since we are adjusting more and more each day.
Kim
My 10 year old son has had diabetes for three years. The early months are about getting educated and oriented and getting back on your feet. The BG’s will be a bit wild initially, despite your best efforts. The body may be insensitive to insulin because it was high for a while. There are re-adjustments the body has to make and if you have a good MD, trust in their advice and do a lot of logging. There’s nothing unexpected about bg’s like what you are describing.
Just wanted to share some unsolicited bits of wisdom about adjusting to the diagnosis and helping your child make the best adjustment as well. What I would recommend is thinking about the bg reading as “just a number.” Glucometers are an amazing innovation since the body is really flying blind without the beta cells to sense blood glucose. All numbers are “good” because they provide information and point us in the direction to act. Try to get in the habit of calling it “checking” and asking your child if they can “get a number” for you. A lot of parents get into trouble by calling it “testing” because tests are to either be “passed” or “failed.” Try to model a curiosity and a mater-of-fact attitude toward the bg’s, which is what we want our children to have, rather than calling numbers “good” or “bad” or making the child feel ashamed because of their number. The number is not them and diabetes is not them. Even if you are crying/screaming/raging inside because of the diagnosis and a high or low BG, try to stay in a loving place and be supportive. Your child is probably still in shock about what’s happening, even if they have on their “game face.” The way that you help them adjust to it and care for themselves, including the words you use to talk about diabetes, will shape how they adjust to and think about it. This age has a lot of potential for laying good groundwork, as opposed to being diagnosed as a teenager. We all know where you are and are wishing you the best.