lows, then highs-need insight

[KarenLynn]

Hi. I'm new to the site, and to diabetes. My daughter (turned 5 on Tuesday) was diagnosed 2/5/07. No family history on either side so we truly are starting from scratch. I think I'm beginning to take it all in, but I'd like some opinions on her BG#s

Last weekend we had crazy lows and her insulin was significantly reduced over a 4 day period. Thought we were okay, but we are still dealing with lows. I guess she is in her honeymoon.

Here's the details. When Grace gets up her number are about 100. She gets 4 nph before breakfast. Both yesterday and today she had lows by mid-morning. Today breakfast at 7:30. She's getting crabby and telling me she's hungry at 9:00. We test-129. Okay, we think all is good. Mood continues to go downhill. Test at 9:30 her bg is 45! We treat, it does up. Good. Before lunch, BG is 79. then before dinner (5:00) it's 296. Same thing yesterday. For dinner she gets 1 unit of Humalog. Bedtime she gets 3 nph, but BG is 81. Isn't that low? Yesterday she was 334 before dinner and then 73 before bed. These numbers seem too high and too low for my (admitedly limited) knowledge.

Sorry so lenghty. Just looking for some hlep.

Thanks

Karen

[EmmasMom]

Hello and Welcome!
I'm sorry about your daughter's dx's.:(
The problems you're seeing are likely a result of the NPH insulin she's taking. NPH has a bad reputation for being very unpredictable and causing roller coaster blood sugars. It may peak at 3 hours, 6 hours, or somewhere in between which makes scheduling nearly impossible. The peak is very harsh and will cause a low if enough carbs are not eaten at the right time, and it often causes a low in the middle of the night when it peaks too.

My daughter was put on NPH at dx's and it was awful for us. We got completely different results everyday and had lows constantly. I also had to feed her around 2am every night because she was always low. The lows meant extra carbs and a rebound high that we couldn't correct.
I highly recommend asking you endo about Lantus or Levemir. It provides a stable background of insulin for 24 hours, no peak. Then your daughter can eat when and what she wants and you give insulin to cover the carbs. It provides much more flexibility and much more stable numbers.

My advice for now;
Test often. Anytime you sense that something may be off just go ahead and test her. Don't feel guilty about doing it, it's the only way to know what's going on. Definitely test at night when the NPH is peaking. Her waking with a good number doesn't mean she wasn't low, she may have rebounded on her own, so test until your sure she's not having lows at night.
Make sure she gets her snacks and meals on time.
Try treating lows with smaller amount of glucose. Since you can't easily correct the highs, it's best to try 5-10 grams of glucose for a low. If that doesn't work add more. But you don't want to end up with a 300+ number after every low, and that's really easy to get with 15g of fast acting sugar. (Every child is different, so of course do what works for her)

Research an Insulin pump! Not everyone wants to pump, and some people take some time to decide and that's fine, but they are amazing tools for managing diabetes. They are the closest thing to a functioning pancreas and allow you to easily dose the exact amount of insulin you need, exactly when you need it. They aren't perfect, but they're amazingly good!

Please feel free to ask anything, anytime or even just vent! We have all been there, or at least close!;)

[KarenLynn]

Thanks for the info. I don't have another endo appt until JUNE. That seems like half a lifetime. I wasn't overly impressed with the endo ofices, the Dr's seemed ok. They are, however, assiciated with the childrens hospital here. So I don't know if I need to find another endo.

I know I cannot deal with all these lows. They are making me crazy.

I don't think the dinner time highs are becaue of the correcting mid-morning, because her lunch numbers are good.

We didn;t go to church last week because I am not prepared to trust soemone else with my child yet. There was no school this past week (mid winter break) but I don't believe we will go to church tomorrow either and I'll be a wrreck if I send her to preschool, even just for 2 1/2 hours!

Should I insist on another appiointment and a change in insulin or just find another dr?

[KarenLynn]

Also, we are testing at night. Anywhere from 2am to 4 am.those numbers seem steady-115 to 140.

[hold48398]

I'm sorry you had to join us :(. Amy already gave you some great advice. I also wanted to add that a high often follows a low, as your daughter's body may release some of its own glucagon (sugar) stores when her BG drops too low. Just something to keep in mind....

Hang in there- the honeymoon can be quite unpredictable. I second trying to get off NPH and maybe onto a more flexible regimen like Lantus. We too started on NPH and dealt with many unpredictable numbers and several lows at night. Lantus stabilized Mia's numbers very nicely and she was very well controlled with it. We have since moved to the pump and found new life :rolleyes:. Something to ask your endo next time :cwds:.


Welcome!

[Mojo's mommy]

Please don't wait until June to talk to her Endo, They should be available to you 24//7 on call as well for someone who is so newly diagnosed. If someone is not available to you at all hours I would strongly recommend you find another Doc..

The first few months are almost always a rollercoaster with many, many insulin adjustments. They really are guesstimating in the 1st few months on dosing and many tweaks will probably need to be made.

I agree with Amy, NPH is what my daughter 3years old at the time was put on at diagnosis and we had a very rough time with the strict eating schedule as well as she had tons of lows to the point where she lost the awareness that they were coming on. That in itself is very dangerous not to mention very hard on everyone involved. Lantus & Humalog is by far a much better regimin and allows for you to feed your daughter and not the insulin!

Try to get ahold of your doc as soon as you can for an adjustment at the very least . Best of luck to you and your daughter..

Any questions feel free to ask away...:cwds:

[kel4han]

Sorry you had to join us! Is your Endo a Pediatric Endo I assume? You should always always always have a followup after 2weeks for a diagnosis such as this! Then it should be expected after 3months max. This is a 5 year old for goodness sakes. I wonder what your Endo is thinking? Like was said before, you should have someone available 24/7 for questions. This is not a condition that questions can wait until the AM. NPH as they mentioned as well is outdated. I would insist that your daughter be switched to Lantus/Levemir TODAY so you can learn about this to start with instead of going thru hell learning to manage NPH. Remember, Crystal Light. It has been a life saver for High readings and keeping hydrated when plain water gets boring for little ones. Hope you find a wealth of knowledge here. The support here is amazing.

[staciebco]

Hi Karen,
Very Sorry to hear about your son's dx's. We are also new to all of this. My son was dx'd in late December.

You will find alot of posters on this board do not like NPH. While I am certainly not an expert, we have found that it does work for us. We do have to plan our meals and snacks about the same time each day, but for the most part, we were doing that already. Caleb takes NPH and Humalog in the morning to cover breakfast and lunch and Humalog and Lantus at dinner to cover dinner and bedtime. It's worked great for us, in that he only takes 2 shots per day. The NPH can be restrictive because you do have to "feed the insulin", but he can pretty much eat whatever he wants and his numbers stay pretty consistent. Hopes this helps.

Good Luck and God Bless.

[EmmasMom]

We didn;t go to church last week because I am not prepared to trust soemone else with my child yet. There was no school this past week (mid winter break) but I don't believe we will go to church tomorrow either and I'll be a wrreck if I send her to preschool, even just for 2 1/2 hours!

Should I insist on another appiointment and a change in insulin or just find another dr?

We stopped going to church for many months after Emma's dx's. (They were as scared of her being there as I was to leave her). I was also afraid of all the germs. In time you will get back to normal, but just take your time and focus on keeping her safe and healthy.:cwds:

If I were you I'd be calling in numbers every few days, (or faxing the written logs) and making sure they are adjusting her insulin as needed. If they aren't quick to respond, or open to using another kind of insulin I would look for another doctor. Like others have already said they should be available to answer your questions and offer advice anytime 24 hours a day!

In our city there are only 2 pedi endo's, (in the same office) and they are very conservative "old school" endo's. They put everyone on NPH and don't normally let kids use pumps. I have no other options for a pedi endo within 300+miles, so I worked very hard to educate myself about other options and convince them to let me make some decisions. The good news is they were willing to let me! We put Emma on Lantus within about 6 weeks of her dx's and then on a pump shortly after that. She is now the first child in their practice with a CGMS, so I'm constantly pushing their limits! ;) So... if they will work with you it may be fine, but if they wont finding someone better is a really good idea!

[allisa]

I agree that your endo should be available 24/7 since you are so newly diagnosed. It has been 4 years for us, but I remember that for the first few weeks I was calling constantly.

My son was dxd at 5....and I'll tell you.....I learned VERY EARLY on to LISTEN to him.....he KNEW when he needed a snack.....and if meter says all is well, but Ty says different.....I always listen and he is always right !

I defintiely agree.....NPH needs to be fed before the 3 hour hits.,,,that;s why she is hungry. I don't feel comfortable advising other moms ( especially newly dxd) to make any changes in regimen.....but I'll throw in my 2 cents and you can inquire with doctor if you think it has any merit. As far as the highs before dinner.....I'd say that the NPH is defitniely out of her system and that explains the highs. Perhaps an earlier night time dose ( pre-dinner ) would clear it up.....again.....VERY uncomfortable saying......because I remember worrying "what if he doesn't eat all his dinner " etc, etc......

But let me also say I think her numbers sound great for being newly dxd...it is quite a roller coaster you have joined with us.....you sound like you are doing a great job researching and inquiring on behalf of your daughter.

Keep up the great work.....and welcome to this site !

[Twinklet]

I agree with Amy on the NPH. This type of insulin has a 25-50% variability in each individual, on any given day. The peaks are unpredictable and can make managing diabetes very difficult.

I am also SHOCKED that you do not have another appointment until June! Maybe my experience is vastly different, but we saw the Endo 2-3 times a WEEK for the first month, and called in her numbers daily. We still go every 6-8 weeks, and we're 9 months in.

I would call the Endo's office and report the numbers you have. I know we changed insulin doses several times over the first couple of month, and that is not unusual. I would secondly ask for another appointment, pronto. Finally, I'd ask to get OFF the NPH and use Lantus or Levemir as the basal, with Humalog for meals with an insulin-to-carb ratio. It does amount to more shots, but she can eat a much more normal diet and generally when she is hungry and not according to a schedule.

Does your Endo's office or the local hospital offer any classes for newly diagnosed families? If not, there are many books available we can recommend.

I'm sorry you had to join us, but stick around; I've learned SO MUCH from this site!

[Boo]

Hi KarenLynn. Sorry to hear about your daughter's diagnosis. I agree that you should still be in close contact with her endo at this point, and if they are not available to you, I would condsider switching. It will make your life easier in the long run.

We have been on NPH for almost 3 years now, but will be switching to a pump soon (using just humalog).

I assume that your daughter has a meal plan with a set number of carbs/protein exchanges to eat at each meal and snack. Is this correct? She should be having regular snacks within 2-3 hours of each meal depending on the timing of her meals. Have you had an opportunity to work with a nutritionist? We met with one at the hospital who helped us work out our sons meal plan. With a little more info, we may be able to help you a bit better until you can get things squared away with her doctors.

It sounds as if she has pretty good numbers, so congratulations to you on that. But, beware the lows...the more time she spends low, the more her body gets used to feeling that way, and the less she will notice her lows.

I'm glad you found this site so quickly after diagnosis. It took me over a year to get here!

[Amy C.]

She gets 4 nph before breakfast. Both yesterday and today she had lows by mid-morning. Today breakfast at 7:30. She's getting crabby and telling me she's hungry at 9:00. We test-129. Okay, we think all is good. Mood continues to go downhill. Test at 9:30 her bg is 45! We treat, it does up. Good. Before lunch, BG is 79. then before dinner (5:00) it's 296. Same thing yesterday. For dinner she gets 1 unit of Humalog. Bedtime she gets 3 nph, but BG is 81.

In order for you to manage with NPH, you need to be aware when it peaks in your daughter.

Based on what you listed above, the morning NPH starts to kick in within a couple of hours. It seems your daughter needs a snack around 9:30 every day. Lunch must be the amount set. If she is getting an afternoon snack, you might consider leaving that out to avoid the high before dinner, when it seems she is running out of insulin.

Your endo should be available to you now to make adjustments to the food and the insulin. Life on NPH is treating the sugars with insulin and food.

After all that, I agree that NPH is not a good insulin to be on. You might ask if you could be changed before June.

[madde]

Hello,

My daughter Madison was diagnosed at 4 1/2 and is on humalog and nph. It works really well for. It took time to get the schedule worked out, but now It is really good. She doesn't have to eat at the same time every day. She just has to eat.

NPH usually peaks around 6-8 hours. It doesn't have as strong as a peak as humalog, but its duration is longer.

Madison pretty much eats what she wants. And after time I have learned when to cut back and when to add, based on her activity levels, etc.

It is really finding out what insulin regimen works best for your child and going with that.

Finding the best blood sugar control with whatever insulin you use is the best!

I am sorry for your son's diagnosis, and wish you the best. You will find this board very supportive and full of great information.

Take care!

[Momof4gr8kids]

Karen, Welcome to CWD. Sorry about the dx of your son. Glad you found this site though, it has been a huge help to me.

Here is some information on different types of insulin. And different treatments. This way you can be informed if you should choose to ask for another type of insulin, or the pump.

I do agree about the NPH. It is wickedly horrible stuff for most people who try it.
Good luck, Jamie

http://www.mayoclinic.com/health/insulin/DA00091

http://www.drugdigest.org/DD/Comparison/NewComparison/0,10621,40-12,00.html

http://care.diabetesjournals.org/cgi/content/abstract/27/7/1554

http://www.minimed.com/professionals/realtime/clinical.html

[selketine]

I agree with what Andie (Twinklet) said - I would just rewrite that post to say more. NPH is a NIGHTMARE for many people because of its variability of action (not peaking at the same time every day, not peaking at the same strength). I felt like a prisioner in my house when William was on it cause I would need to serve him lunch at a moment's notice - whenever that darn stuff peaked - which was never the same time every day.

You do need to see a pedi endo before June too - that is ridiculous! :eek:

[KarenLynn]

HI to all you wonderful people!

The ped endos are available 24/7. I just never know which one I am going to get. Yesterday I spoke with a man for the first time. He said to reduce the morning dose to 3 units and if that didn't work Grace would need to eat more carbs at breakfast. She eats 3 to 3 1/2 now and that is somewhat of a struggle "you REALLY need to finish that milk" And it's ONLY 1/2 a cup! The have changed her medication about every other day. I just want out of the lows!!

Grace's carbs are 3 to 3 1/2 at breakfast-7:30
4 at lunch-12
3 at dinner-5-5:30

1 carbs snacks, 10 am, 3pm, 7pm

I went to church (alone) and briefly spoke with a fellow mom whose son was dxd in the fall. Same endos, they are on nph with variable results. She said it's better now, but she wants the pump. I'd love for Grace to be on the pump before starting kindergarden in the fall.

I was at the endos on Thurs, but I will be calling tomorrow and insisting on a change to Lantus. It seems as if her body processes the nps quickly. I agree that it does not seem she has any insulin left at dinner time and the Humalog is just enough for what she eats. Because she is obviously going low just before bedtime snack and shot.

Thanks again for all your advice and support!!!!!

[wendyc]

Thanks for the info. I don't have another endo appt until JUNE. That seems like half a lifetime. I wasn't overly impressed with the endo ofices, the Dr's seemed ok. They are, however, assiciated with the childrens hospital here. So I don't know if I need to find another endo.

I know I cannot deal with all these lows. They are making me crazy.

I don't think the dinner time highs are becaue of the correcting mid-morning, because her lunch numbers are good.

We didn;t go to church last week because I am not prepared to trust soemone else with my child yet. There was no school this past week (mid winter break) but I don't believe we will go to church tomorrow either and I'll be a wrreck if I send her to preschool, even just for 2 1/2 hours!

Should I insist on another appiointment and a change in insulin or just find another dr?

Absolutely insist on another appointment or at least a bit of their time to discuss your concerns over the phone. Let them know that you are not comfortable with how your daughter is reacting to the NPH regimine. I know it's early in the game for you and you have diabetes info coming at you from every direction, but have you done any research on Lantus/Novolog? Lantus is a long acting insulin that you give either once or twice a day. Novolog is a short acting insulin is given anytime carbs are eaten. So while it means up to 5 shots a day, it is much more predictable (as predictable as diabetes can be!) than NPH. You are also feeding the child, not the insulin. It offers flexibility. Prior to pumping (which is great for us), we were on this regimine, and while it was not cake walk, it was much easier than what I had heard about NPH.
As for switching docs. If you don't like them, didn't click, definitely look for another one if there are others in your area. This is going to be an indefinite journey. You want an endo/cde who will work with you, not against you. You want to have an open dialog with them at all times, and feel that you are getting support.
I am shocked that being a newbie that they are pushing you all the way out to 4 months. They should be seeing you every 3 months. I understand that there is a shortage of ped. endos, but to make you wait that long is a little excessive.

I am sorry to hear of your childs diagnosis. You will find a wealth of info and support here! Sorry there was room for another member in our club.

[Twinklet]

HI to all you wonderful people!

The ped endos are available 24/7. I just never know which one I am going to get. Yesterday I spoke with a man for the first time. He said to reduce the morning dose to 3 units and if that didn't work Grace would need to eat more carbs at breakfast. She eats 3 to 3 1/2 now and that is somewhat of a struggle "you REALLY need to finish that milk" And it's ONLY 1/2 a cup! The have changed her medication about every other day. I just want out of the lows!!

Grace's carbs are 3 to 3 1/2 at breakfast-7:30
4 at lunch-12
3 at dinner-5-5:30

1 carbs snacks, 10 am, 3pm, 7pm

I went to church (alone) and briefly spoke with a fellow mom whose son was dxd in the fall. Same endos, they are on nph with variable results. She said it's better now, but she wants the pump. I'd love for Grace to be on the pump before starting kindergarden in the fall.

I was at the endos on Thurs, but I will be calling tomorrow and insisting on a change to Lantus. It seems as if her body processes the nps quickly. I agree that it does not seem she has any insulin left at dinner time and the Humalog is just enough for what she eats. Because she is obviously going low just before bedtime snack and shot.

Thanks again for all your advice and support!!!!!

This is something else that is very distressing about NPH. You have to feed the insulin, and force your daughter to eat more than she wants to or needs to in order to avoid a low. Later, she may not get all she wants to eat because of the restrictive schedule.

WendyC above mentioned Lantus and Novolog (or Humalog). If your Endo will calculate a carb-to-insulin ratio for your daughter, she can eat whenever and pretty much whatever she wants. You simply dose her for the amount she WANTS to eat, not what she HAS to eat. It does involve more shots in a day, but is much more freeing IMO.