So confused

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kerryc1998 Posted: Wed, Mar 18 2009 9:06 AM

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Hello there everyone. My name is Kerryan. My son is 10 years old and has just been diagnosed with Diabetes type 1. He is an amazing boy and is dealing with all of it amazingly well. I am so proud of him. When we got home from his doctors appointment where he was diagnosed his Dad started to cry...my son turned to him and said  "come on...it's not the end of the world! I will just learn to like shots." then he smiled and ran off to play Wii. I have so many questions regarding this that I don't even know where to begin. His school nurse just told him today that he can no longer get hot lunch. Which really irked me. I don't want him to feel singled out. I am wondering peoples opinions/experience with Pumps. How often to most people wait between meals and snacking, etc. How do you get over the fear that his sugar will drop too low at night. What can I expect?

I will stop rambling now. Thank you to anyone who responds. I hope you all have a great day!

Kerryann

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kat replied on Wed, Mar 18 2009 9:59 AM

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Hello Kerryann -- and Welcome!

It sounds as if you've got one amazing kid!  He must have great parents, too, to have taken his diagnosis so well.

I have no specific advice to offer you (I'm an adult Type 2), but there are other mothers with Type I kids who check in here from time to time.  Please try to be patient.  Unfortunately, these boards are not as active as they once were.

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Julie_ replied on Wed, Mar 18 2009 10:55 AM

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Hi Kerryann,

It sounds like you are on the right track with everything.  The only thing I don't get is the nurse telling your son he cannot get hot lunch anymore.  I don't see the reason for that.

I think the pump is the way to go, for sure.  I was diagnosed Type 1 as an adult and have been using a pump for 7 years.  I know there are more challenges when you are dealing with a growing child/adolescent, but those challenges of staying on top of blood sugars would be there with injections or the pump.  The pump will allow your son to lead a more normal life than injections would, because his blood sugars will be more controlled.

Testing often is the key to Type 1.  You just have to be aware that what works perfectly this week, won't work perfectly next week, and you have to learn to make adjustments in insulin dosing without the help of the medical professionals, because these changes will come day-to-day.

As far as timing meals and snacks, that is not a worry with the pump as much as it is with a long-acting insulin like Lantus or Levimir.  With the pump, you dose as you start eating, so you can eat as often or as seldom as you want.  Great plan for a kid!

As far as worring about night time lows, you will have to test him in the middle of the night until you have a comfort level with his night time dosing.

Keep asking away.  My best to you and your son!

Julie

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Madman replied on Wed, Mar 18 2009 11:11 AM

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Just a suggestion, but have you tried to meet with the school nurse to find out why she is saying no more hot lunches? 

For the life of me, I can't figure out why she would say that.  Perhaps a face to face meeting would be beneficial for both of you, and that can only help your son out.

Best of luck and keep us informed please.

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whalen replied on Wed, Mar 18 2009 12:24 PM

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Hi Julie -

Just wanted to point out that Lantus and Levimir are basal insulins.  I take Lantus each night and then can eat or not as I choose (I use fast-acting before meals).  Lantus does not interfere at all with the timing of meals or snacks as long as the basal dose is correct.

And Kerryann, I wish all the best to you and your son.  He sounds wonderful.  I am a type 2 so really can't comment but I don't get the hot lunch thing either.

Please keep us posted.

Gale

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kerryc1998 replied on Wed, Mar 18 2009 1:23 PM

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Thank you all so much! Trevor is an amazing kid. He can light up a room with his personality. :)  He is on Humalog for his "corrections" and his meals and then takes Lantus at night. They also have us counting carbs. He is doing well. He was low last night, 54 so he had glucose gel and it helped a lot, he was around 200 in the middle of the night last night. Today at school before lunch he was down to 64. It is like a see saw sometimes. The school nurse I don't get. I went and met with her and gave her his supplies, etc. I didn't love the way she dealt with things off the bat. She told him it was his "issue" and he needed to "own" it. Being a very literal person I corrected her and I told her it was his BODY and not an "issue". So he walked her through his testing and injections and even how to find out how much insulin he will need depending on his level and what he eats. Then she suggested that he only bring in cold lunches. Which irritated me because he likes hot lunch. She also began explaining to him how "his pancreas doesn't work right and he wants to take as little insulin as possible because it isn't good to take a lot". So I explained politley that he had just sat with myself, his dad and step mom and his big sister for several hours with a diabetes educator and then a few more hours with a dietician. She was making him nervous which is the last thing I want. Then I questioned her hot lunch decision and I told her I didn't agree. That he was to live as he normally would and he shouldn't have to change something like that. Especially when he specifically asked if he could still have hot lunch and his dietician said absolutley. That he controls the diabetes and the diabetes doesn't control him. I explained to the nurse that we can figure out his insulin he will need for lunch at home and tell her and all she will need to do is add the units to correct his blood sugar if it is high. So, we agreed he would have hot lunch. Now after his first day at school they changed the hot lunch menu for the day and he got upset because he didn't know if the nurse could help him with the units and he had an awful stomach ache. So she decided that he is no longer allowed to have hot lunch because it is "too emotional" I may be being protective but I think she is being mean and I guess lazy is the word I am comfortable with. I am just so frustrated. I know I am emotional as it is about his diagnosis so I may be over reacting. But he is such a good kid and I don't like for anyone to make this difficult for him when he has done so well at not letting this get to him.

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GreenGiant replied on Wed, Mar 18 2009 2:35 PM

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I think the nurse is out to lunch!  Blood sugar levels react to the amount of carbohydrate in a meal, not to whether the food is hot or cold.  the temperature of the food consumed has no bearing on bg level.  I've never heard such a ridiculous point of view.  and yes, I highly recommend a pump as the best tool currently available for bg control.  I have been on a pump now for almost 7 years and my control is very good.  I did recently add a continuous glucose monitor due to low  unawareness. 

Fred

type 1

minimed paradigm 522 and CGM

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Julie_ replied on Wed, Mar 18 2009 4:02 PM

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Gale,

Many Type Is find that Lantus or Levimir are just not adequate to control our blood sugars because once they are in your body, you cannot change the rate at which they act, like you can with a pump.  One of the main reasons I went on the pump was because the Lantus just couldn't do its job no matter what dose I took, because I need a certain rate at 1:00 AM and a different rate at 5:00 AM and Lantus cannot do that.  I also had to snack at 3:00 PM on Lantus because my body did not need as much insulin at that hour, but on Lantus you are stuck with having to have the snack rather than cutting back on your basal rate on the pump.  In fact, my pump CDE told me that inability to handle blood sugars on lantus is one of the main reasons people give for going on the pump.  The whole ball game of using Lantus and Levimir is different for Type 2s, who are not dealing with a total lack of insulin production.

Julie

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Julie_ replied on Wed, Mar 18 2009 4:12 PM

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I am not siding with the nurse, first of all, because what she said about trying to take as little insulin as possible is just poppycock, BUT, I am starting to see where she is coming from with the lunches.  It's not the hotness or the coldness, but the preciseness of being able to measure the carbs correctly that must have her concerned.  I have trouble with that myself when faced with a serving of corn or a blob of mashed potatoes.  I still am stuck with a best guess for those kinds of things, and I frequently guess wrong and have to correct later.  Whereas if Trevor had a sandwich and a fruit and a bag of chips for lunch, those things are easier to count carbs for.  Well, the fruit is not THAT easy unless you have a scale or weigh it at home, but the bread and anything in a package like chips is standard carb counting.  So she is looking at having to eyeball hot lunches and guess on carbs, and if she makes a mistake Trevor could either have a high or a low as a result.  I do see her point now.  But I still think she needs some more education.  Trevor needs to take exactly as much insulin as his body requires. It is ridiculous to give him the bizarre idea that insulin is a "bad" thing. 

Good for you for standing up to the nurse, though.  We don't want her on some irrational power trip.  These things have to be worked out together, not decided by her alone.

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mrfino replied on Wed, Mar 18 2009 4:43 PM

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Did the school nurse make a "suggestion" that your son only bring cold lunch or did the nurse  make a "decision" that he could not have hot lunch? I would be surprised if a school nurse has the authority to make such a decision. I know you have a lot to handle in mastering the day-to-day management of your son's condition, but you might want to look at the information available from the American Diabetes Association on how schools should treat students with diabetes.  http://www.diabetes.org/advocacy-and-legalresources/discrimination/school.jsp.

John Type 2

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Spirit replied on Wed, Mar 18 2009 6:39 PM

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I think that John's suggestion about using the ADA as a resource in dealing with diabetic kids in schools is an excellent one.  I recommend that you arm yourself with all the info you can in this area.

About the hot lunch issue itself...School lunches are not always the healthiest for diabetic kids.  They can be full of white noodles, pizza, mac n' cheese, white bread and fruit in sugary syrup.  It can be very difficult to estimate what the nutritional content of these foods is, so mistakes can be made about matching insulin requirements to food intake.  Perhaps a slower approach might be helpful.  Pack a lunch for most days and one by one test out the hot lunches provided.  I know one T1 kid who cannot tolerate the pizza provided at school, no matter what.  So, on pizza day Mom sends in to school an acceptable brand of frozen pizza that can be microwaved.  That way, the child gets to enjoy a pizza treat along with the other kids without experiencing any afternoon highs or lows. 

I would also suggest that you ask whoever provides the hot lunches for a nutrional breakdown of each item.  They should be able to provide you with this.  This way, you and your son can make some decisions about what he eats every day for lunch.  For example, if applesauce is given with another high carb item, you might want to pack a fresh raw apple for him.  In this, he does have to "own" his condition since it will be up to him to make healthy choices (with your help and support).

Spirit

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kerryc1998 replied on Wed, Mar 18 2009 9:57 PM

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Much thanks again for all of the replies. I am so happy there is a resource such as this to talk to people who understand. I will look into the ADA on how schools should treat children. I will say that at first it was the nurses suggestion that he not have school lunch. Then after the first day she DECIDED he can't have it. But I have to say that after reading the last reply from Spirit I actually understand now where it is coming from, and I can't possibly tell you how good it feels. It makes sense that it would be difficult to determine how much insulin he will get because the portion sizes vary, etc. YAY!! I get it now. I feel so good. I still disagree with the school nurses demeanor, etc. but it clicks now. She does need to be educated. I don't know how to go about making that happen.

Today he went down before lunch and his blood glucose level was 64. The nurse gave him three Glucose Tablets and sent him to eat lunch....I was like HUH? I know I am new to this but shouldn't she have given him enough insulin for his lunch (which was pre-packaged from home and insulin units already determined) minus fifteen for the low.

One more question....Is there an estimate amount of time it will take before his levels are somewhat consistent? When will this all start to feel normal or not so scary? Everything in my world seems different to me. How I look at him, other people, just everything. I sometimes feel like I am in a fog. It is normally when I am alone.  When I am with him I am in Mom mode I am his rock and let him know everything will be ok and it is all good.

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dparker708@Aol.com replied on Wed, Mar 18 2009 10:04 PM

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Hi Kery -

I read with interest your post and the response of others to your post.  I can't help but feel angry toward this rigid nurse and laughed at Fred's comment about the hot vs. cold food.  She should be reported to whatever nurse association she belongs to.  Your son should not be penalized for having diabetes.  The more normal is life to that of his peers, the better his blood sugars will be.  I agree, the pump is the way to go.  Contact your doctor for approval and then have the nurse educator educate you both.  I think your son wouldenjoy the pump, i's very techie!  Good luck.

Diane

Type I (all my life)

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Julie_ replied on Thu, Mar 19 2009 7:28 AM

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Hi again, Kerry,

I'm glad you feel better about the nurse's actions after our responses.  She may not be right on everything, and she is not good at communicating her intentions, but she is not that far off base in her decisions.

About her giving the glucose tablets and then giving him insulin and sending him to lunch (is this what she did?) that is by the book.  You wouldn't want to ignore the low and give Humalog or Novolog insulin before a meal when the blood sugar is 64 because the insulin may start acting before the food starts acting and then Trevor would have a bad low.  The 3 glucose tablets was probably overkill for a 64 - I would have not taken more than 1 for myself, but again, she is probably using standard written guidelines for how to treat a low.

Keep talking to us, you are doing amazingly well.

I wish I could be more encouraging about the consistency, but I have to say that Type 1s can never rely on consistency.  As I said in my first post to you, what works this week will not work next week, and adjustments to insulin doses have to be made on a continuing basis, as a result of your frequent testing.  This is even more true with a child who is growing and changing.  Your peace of mind will come with the knowledge that you are keeping on top of his changes with the frequent blood testing and adjustments, and your knowledge of how to do that.

My best to you, Again.....

Julie

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whalen replied on Thu, Mar 19 2009 8:11 AM

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Julie,

I stand corrected.  I was not thinking of the difference between type 1's and type 2's.  I forget that everything is much harder to regulate in type 1's.  At least I think it is.

Take care,