Not getting enough carbs at meals

[mapoe4]

John (4) hasn't been eating like he should. He tells me he is full and doesn't want to eat anymore. I have been trying to make sure that he gets his carb count but he hasn't been wanting to eat. I know he has a little tummy and can only eat so much but I don't know what to do or give him to make sure he gets enough. Any suggestions would be appreciated. I have been giving him juice and chocolate milk at meals and snacks to make up what I can but he is getting tired of theses.

[Amy C.]

Why do you think he isn't getting enough carbohydrate? The test for eating enough is whether or not the child is growing consistently and gaining weight consistently.

It sounds to me like he is getting enough food. There is no prescribed amount of carbohydrate that a person should have. A child needs vegetables and protein as much a carbohydrate.

The beauty of the contemporary insulin regimens is that a child can eat what he wants -- like a non-diabetic does.

The job of the insulin is to match to the food eaten, not to eat enough food for the insulin taken.

Even on NPH this can be done. Ask the endo if you can reduce the amount of insulin he is getting or investigate getting him on Lantus/Fast Acting.

[twbeckman]

I would call your peds endo and tell them what is happening, request education to dose your son's insulin based on how many (or few) carbs he eats instead of a set meal pattern. Do you think his appetite has significantly declined, or is it just the pressure to eat on demand? Little kids need to eat small amounts more frequently and it is hard when the meds drive the train. Their appetites come and go in cycles, but obviously would be concerned if he is losing weight/stopped growing suddenly.

[coni]

Hi mapoe4 -
I agree with the prior posters. It sounds like your son is on a set carb amount per meal. We did that when first diagnosed for a number of months. It was easy to dose meals, but DD's appetite didn't always fit with the plan! We moved to dosing carbs eaten based on an insulin to carb ratio. That way, we let her eat what she wanted and dosed accordingly. I'd ask your endo about doing this.

You really don't want your child to start battling you over eating or have other issues associated with food. Also, I recommend reading the book Sweet Kids. You can see more about the book in the books section of the forum.

You're on the right track. You just need your endo team to help you do what works for your child.

[mapoe4]

The endo told me that he needs 45-60 carbs for meals and 30-45 carbs for snacks. He gets 7 units in am and 2 units pm of Humilin. I wish I new more about this because it gets very frustrating for me and him. I will look up this book though. I have to wait til this afternoon to call the endo because I have to go to the doc this am. thanks for the input.

[Skyefire]

I had the problem a lot with Phoenix, on NPH he never wanted to eat, always had to feed the insulin to keep his BG up, my poor little guy is 2 and now after all the fighting is not a great eater, like he was! Some meals are still a fight, so these might help.

Also my nephew is on NPH and is 4 and his carb counts are much lower, only 35-40 for meals and 15-25 for snacks. They lower his NPH to work with this and then treat with N when needed.

Phoenix Loves.....

Raisins
Daninio (yogurt drinks only 3oz for 15g)
Bananas
granola bars
Triscuit crackers (4 for 11g)
We love to make smoothies
Fruit cups (some are over 20g)
extra milk powder in food helps sometimes also. I add it to KD and other pasta sauces. adds extra carbs. (for KD add the milk and butter to the pan until melted, then add cheese powder and milk powder until melted, sometimes I add a bit more milk if it looks to thick, then stir in pasta. Only way I found to mix it without powder chunks)
We also use, mini bagels and rolls to go with meals, Phoenix loves them and they have lots of carbs so I am happy. Mini cresents are great too, we gets some that are 10g and perfect size for him to

Rice is a great carb small amount for alot of carbs.
I also found that smaller pasta noodles work well too.


we use cookies and junk as a last resort, but we have used it.

[Kara]

The endo told me that he needs 45-60 carbs for meals and 30-45 carbs for snacks. He gets 7 units in am and 2 units pm of Humilin. I wish I new more about this because it gets very frustrating for me and him. I will look up this book though. I have to wait til this afternoon to call the endo because I have to go to the doc this am. thanks for the input.
My son is on a sliding scale as well. He will be 4 at the end of September and he's only supposed to have 20 - 30 carbs per meal and 15 for a snack. Maybe you could talk to them about reducing the number of carbs needed if they want to keep you on a sliding scale? I would definitely check about the I:C ration though, I would loved to have his myself.

[Amy C.]

The endo told me that he needs 45-60 carbs for meals and 30-45 carbs for snacks. He gets 7 units in am and 2 units pm of Humilin.

Just so everyone can understand the same language, your child is taking NPH insulin. Humilin is the brand name and NPH is the type of insulin he is taking. If I recall, both words are on the box. My son was on NPH for four years, until Lantus came on the market.

I see from previous posts that NPH is the only insulin he is on.

It sounds like this needs to be reduced yet again. This is not at all uncommon in a newly diagnosed child. You should not have to deal with these sort of headaches.

All the discussion about insulin to carbs ratios doesn't really work when on NPH. This insulin kicks in about 4-5 hours after the injection and must be matched with a prescribed amount of carbohydrate.

[Kaylee's Mommy]

I would call the endo and let them know that the amount of carbs is to much, that you are having a hard time getting that amount into him.

Kaylee is on a carb to insulin ratio but I STILL have a hard time getting carbs into her.. some days she's down to 25carbs a day, she's five and should be taking in about 180 carbs a day, according to her endo and CDE..

[coni]

The endo told me that he needs 45-60 carbs for meals and 30-45 carbs for snacks. He gets 7 units in am and 2 units pm of Humilin. I wish I new more about this because it gets very frustrating for me and him. I will look up this book though. I have to wait til this afternoon to call the endo because I have to go to the doc this am. thanks for the input.

I don't want to mislead you. The book is about feeding D kids in a positive and healthy manner given the issues we have to deal with, but it won't help on the dosing issues. It's still a good book. I mainly recommend it because it gave me a great perspsective on how to deal with food, a stubborn kiddo, and diabetes.

Good luck. I know it's hard.

[coni]

All the discussion about insulin to carbs ratios doesn't really work when on NPH. This insulin kicks in about 4-5 hours after the injection and must be matched with a prescribed amount of carbohydrate.

Good point Amy. We were on Lantus and Novolog and unnecessarily had a set meal plan, so it was easy for us to switch to an insulin to carb ratio.

[Nightowl]

It seems crazy to shoot insulin and then have to struggle to have your child drink juice and chocolate milk to cover the higher doses of insulin. Those carbs don’t add anything nutritionally and only result in difficult glycemic control. (I know under the circumstances you have had no other choice. You need to get those carbs in him anyway you can so he won’t go low.) There is no minimally required carb count for growth, regardless of what your doctor tells you. In addition, the higher doses of insulin are not necessary and together with high blood sugars that swing up and down are stressful on remaining beta cells. I would get on an insulin therapy that allows you to decide what and when he eats.

[owensmom]

That sounds like an awful lot of carbs to be consuming, however, until you have things sorted out - when the kids around here are tired of the same old we offer fruit kabobs, peanut butter or cool whip to dip fruit in or different colours of Jello sprinkled over apple or pear slices.

Wishing you luck.

[MamaChrissa]

Jason was a very picky 4 year old at DX. If he ate 20 carbs at a meal, consistently...we threw a party. :rolleyes: Danimals are good and I think he nearly lived of chix nuggies, FFs and mac & cheese. Oh, wait...he still does...LOL

But I would have a chat with your Endo about changing ratios. That seems like a lot for a 4 year old. I might also mention looking into the pump. Its so much easier on picky eaters..and their mom's sanity! :cwds:

Good luck!

[twodoor2]

I know many endos like to prescribe NPH to younger children to avoid extra shots, but it seems like it's best suited to older children with larger appetites and those who like to graze all day long. I would strongly recommend switching to Lantus so that you don't have to force feed him anything he doesn't want. Lantus does require more shots a day though, so that's something you have to be aware of.

NPH was first prescribed to my DD when she was first diagnosed, and I had the most difficult time trying to feed her. My very first post on this forum was exactly like yours in this thread - "How to get my daughter to eat?"

Good luck, and know there are other insulin regimens out there. I don't think there is anything written in stone indicating that a child MUST have 180 carbs a day either (is there??). My daughter regularly gets less than that (average 135 carbs a day), and she's doing fantastic. I do feel a diet balanced in a variety of healthy food, no matter what it is (fat, protein, carbs), is the most important thing.

ETA: Another reason I don't care for NPH is that if the child gets sick and doesn't want to eat, it's very difficult to avoid lows. Or perhaps their appetite is very minimal one or more days. Small children are too unpredictable as far as their eating habits are concerned IMO to be on NPH. Perhaps it does work for children that are good eaters, but as we all know, this isn't always the case.

[danismom79]

My daughter was getting that much food right after diagnosis, and it turned out to be way too much. And she's 9! So I can imagine your little one is stuffed. Do you also see a nutritionist, or just the endo? There's no reason he/she shouldn't work with you to figure out a better meal plan, if that's what you choose to stick with. The NPH can be adjusted.

Until then, can you give him smaller meals with the same carb count? If my daughter has an off day and decides she doesn't want to eat much after she's already gotten the insulin, a Yoplait custard yogurt and graham cracker add up to about 45g of carb.

[Kirsten]

I agree that that is way too many carbs for a 4 yo! M y 4 yo usually eats 20-40g per meal and 15-20g per snack. Of course, we are pumping, so we have more flexibility, but it's easier to give zero carb foods to fill them up than to get them to eat high carbs when they are full, so I would suggest lowering his insulin. Griffin was on NPH for his first year post dx, it was such a pain!

GL!

Kirsten

[robinseggs]

My daughter was dx at 10 months. She was put on NPH and Humalog ....so 2 shots a day. We NEVER did count carbs. In the a.m when she got up we took blood sugar and then dosed an amount of humalog according to that number. Has anyone ever heard of that? By age 4 it was getting hard though as her mid day numbers were going up and seemed to need extra shots.....so switched to Lantus...We started counting carbs/dosing per carb when she started pumping at age 4...

[miss_behave]

I see that you're on NPH and are "feeding the insulin" instead of feeding the child. I feel this is so unnatural. It must be horrible forcing your child to eat when he's not hungry. I suggest you ask the endo about switching to Lantus.
The best thing about Lantus vs NPH is that you can eat whatever you want, whenever you want, and just dose for the carbs. No meal plans, no set carbs, no HAVING to eat because of the nasty peaks.
Study after study has shown that Lantus leads to better blood sugars and quality of life. NPH is an old school insulin which is not used very often anymore, and doesn't work for manypeople.

[tuckerk]

Why do you think he isn't getting enough carbohydrate? The test for eating enough is whether or not the child is growing consistently and gaining weight consistently.

It sounds to me like he is getting enough food. There is no prescribed amount of carbohydrate that a person should have. A child needs vegetables and protein as much a carbohydrate.

The beauty of the contemporary insulin regimens is that a child can eat what he wants -- like a non-diabetic does.

The job of the insulin is to match to the food eaten, not to eat enough food for the insulin taken.

Even on NPH this can be done. Ask the endo if you can reduce the amount of insulin he is getting or investigate getting him on Lantus/Fast Acting.

Well said. I had to get that through my head this week. Seems that Caitlin's appetite has changed just this week!!!! she would eat and eat and eat, but lately she will have a few bites and she is done. I have had to adjust to bolusing sometimes while she is eating.

For example for lunch, I just knew that she was hungry b/c she did not eat breakfast well this morning. Her BS was 158--lunch was 1/2 turkey and cheese sandwich, 1/4 cup of mashed potatoes and 1/4 cup of pineapples---I give 1 unit of Novolog and would you know she decided that she only wanted to nibble---I felt so bad b/c now I had to committ to almost forcing her to eat to prevent a low----- I have finally learned my lesson, give insulin to match food!!!!

[mapoe4]

I called the endo and she told me that he isn't running low so they don't want to adjust his NPH. I told her that I have been making it up by giving him more juice or choclate milk of a piece of candy here and there she told me that I needed to give him more nutrisious snacks like peanut butter crackers and such. WTH he doesn't want to eat more food he is full. I tried to explain this to her but she wouldn't listen it was like she was trying to rush me off the phone. So this may sound bad but I have decided to let him eat what he wants and the amount he wants and if he runs low then I will make up for it with juice or something. At least I can then call them back and say he is running low and maybe they will do something about it.I am so tired of fighting with people anymore about anything.

[LJS118]

How long has your son been diagnosed? You shouldn't need to feed his insulin, if you're comfortable with the idea I would just adjust his insulin yourself. I know in the beginiing I asked the doc to help with everything but as time went on I just made my own adjustments. My doc encourages that. But like I said, if youre child is newly diagnosed it may be harder. Good luck and keep us posted.

[LJS118]

Also, how old is your son? Depending on his age that may be too many carbs.

[mapoe4]

John is 4 and was Dx'd 5/29/08. I am not sure how to adjust his NPH I know this is to many carbs (315 from what I figured out) it was fine at first but now he is in the honeymoon state and he isn't as hungry

[twodoor2]

I called the endo and she told me that he isn't running low so they don't want to adjust his NPH. I told her that I have been making it up by giving him more juice or choclate milk of a piece of candy here and there she told me that I needed to give him more nutrisious snacks like peanut butter crackers and such. WTH he doesn't want to eat more food he is full. I tried to explain this to her but she wouldn't listen it was like she was trying to rush me off the phone. So this may sound bad but I have decided to let him eat what he wants and the amount he wants and if he runs low then I will make up for it with juice or something. At least I can then call them back and say he is running low and maybe they will do something about it.I am so tired of fighting with people anymore about anything.

When we were on NPH, even though it was a brief period of time, I complained to the endo that she was having too many carbs, and therefore, she immediately lowered her dose. I don't think it's acceptable to force feed your child to feed the insulin, and your endo's response is not acceptable either.

I'm so sorry you have to go through this, as well as your poor son.

[Amy C.]

I called the endo and she told me that he isn't running low so they don't want to adjust his NPH. I told her that I have been making it up by giving him more juice or choclate milk of a piece of candy here and there she told me that I needed to give him more nutrisious snacks like peanut butter crackers and such. WTH he doesn't want to eat more food he is full. I tried to explain this to her but she wouldn't listen it was like she was trying to rush me off the phone. So this may sound bad but I have decided to let him eat what he wants and the amount he wants and if he runs low then I will make up for it with juice or something. At least I can then call them back and say he is running low and maybe they will do something about it.I am so tired of fighting with people anymore about anything.

I don't recall your saying what his blood sugar readings have been. Would you give a sample of a day's readings.

I know that I would try to get my son to eat and when that didn't work, I used juice to bring him up.

Let John eat what he wants and if he goes low, treat with juice. This is the sort of evidence the nurse needs.

This requires a bit of testing, though.

[Mrs. Russman]

John is 4 and was Dx'd 5/29/08. I am not sure how to adjust his NPH I know this is to many carbs (315 from what I figured out) it was fine at first but now he is in the honeymoon state and he isn't as hungry

My almost 13 year old active son averages 315 carbs a day. I can't imagine getting to get a 4yo to eat that much...of course somedays he only has 150 carbs and others over 400!

If it was me I would call the endo back and say "This isn't working. I can't get him to eat...Help me lower his insulin doses. "
Of course we were told at diagnosis 1)Dr was overall expert, we were going to become the expert on our child. 2) if it isn't working Tell Us! there are other options.

[Nightowl]

I have heard NPH described as a cruel treatment. Some hospitals prefer their patients to leave on NPH because it is the safest approach with regard to ensuring the minimum...life. However, a fast acting insulin and lantus, or even better, the pump, will give your child better glycemic control and a better quality of life. Insist on it. If your endo refuses to switch treatments, ask him why. What benefit is your child getting from NPH? If you need to, find another endo. You could even find a good pediatrician who will work with a diabetes educator to get you set up with a pump. If there is one thing I have learned, it is that diabetes is a disease that is best managed by the patient and the people who love them.

[twbeckman]

If their is one thing I have learned, it is that diabetes is a disease that is best managed by the patient and the people who love them.

Fully agree, as long as those who love empower themselves w/ knowledge! Mapoe4, if you haven't already done so, might want to visit the "Care Suggestions" link on the CWD homepage and begin learning about NPH vs other insulin regimens, etc. Then when you call your endo's office again, YOU can let them know what direction you want your son's care to go in. Diabetes can be managed many different ways, but I agree w/ the other posts--no one should be eating on command to feed insulin, and you should not have to present a logbook full of lows to get your endo to provide age-appropriate care.

[deafmack]

The endo told me that he needs 45-60 carbs for meals and 30-45 carbs for snacks. He gets 7 units in am and 2 units pm of Humilin. I wish I new more about this because it gets very frustrating for me and him. I will look up this book though. I have to wait til this afternoon to call the endo because I have to go to the doc this am. thanks for the input.

He is on a set amount of carbs because of the insulin he is on. Ask to be switched to a basal insulin like Lantus or Levemir and a fast acting insulin like novolog, humalog or apidra. That way he can eat what he wants and you just cover the amount of carbs eaten using the fast acting insulin to cover the carbs at meals and snacks and for necessary corrections. The basal insulin would work in the background.
It will make your life so much easier. 4 year olds are unpredictable in what and how much they will eat and when.
Hope this helps. Wishing you the best.

[Kaylee's Mommy]

John is 4 and was Dx'd 5/29/08. I am not sure how to adjust his NPH I know this is to many carbs (315 from what I figured out) it was fine at first but now he is in the honeymoon state and he isn't as hungry

315 carbs a day, no wonder why he isn't hungry!! that is an AWEFUL lot for a little boy.. your endo should be working WITH you.. they shouldn't be fighting you on this..when is your next appointment? I would talk to them about this, your concerns, about you having to force feed your child.. this is going to start food issues, something that you DO NOT WANT.. if you want to, talk about switching to lantus/levemir, and a fast acting to cover carbs. if they are simply not willing to help you find something that better suits your child, then look for a new endo.. you defininitely need someone that is going to work WITH you, explain how to do things, and take your opinions into consideration, this is YOUR child, you know whats best!

[mapoe4]

Me an DH talked about it last night and we are going to see if we can find someone else. I am very limited on what I can do because we have medicaid . He has a great pediatrician (but he told me he doesn't know alot about D) and I am sure he will help me find someone else.

John's numbers are from 70- 160- he was having lows in the am and she changed it to 2 units in the pm but he is at 7 units in the am.

I am not very good at the computer but I will try to find the other one and read up one it ( sorry coffee ain't kick in can't remember what it was called have to reread)

Thanks for all the info it has helped me feel better.

[mapoe4]

Nest appt not for 3 months. I think I got them all this time.

[twodoor2]

I have heard NPH described as a cruel treatment.

I think it's abusive to force feed a small child, so I agree. It's not the parent's fault either, so please do take that in offense Mapoe4. It's these brain dead endos that keep prescribing it to very young children. It makes me so angry.:mad:

[mapoe4]

I hope that was meant to be don't take offense for me and do take offense for the endo. If it was meant don't for me I don't

[twodoor2]

I hope that was meant to be don't take offense for me and do take offense for the endo. If it was meant don't for me I don't

Yes, that was, my words got discombobulated. :) Sorry. I am so upset about this whole thing. I often wonder if these endos should be brought to the attention of some board of review, and they should know that 315 carbs is way too much for a 4 year old!! I usually don't get very emotional about much in this forum, but every time I see a newbie parent come on this board with a small child that was given NPH (like mine), I get really upset.

It hits home because I know what you're going through. However, our endo saw the need for her to get off of NPH right away, and she scheduled an emergency visit to do Lantus. My endo is very old school, but she's coming around from what I hear. I don't use her for any dosing advice, so that's fine with me.

Now, some people do great on NPH, and there is a broad group of parents and individuals that know how to use it to it's best advantage. I also hear they know how to use it properly in Europe, but North American endos prescribe it in a very dangerous manner. I have no clue as to why.

[miss_behave]

Yes, that was, my words got discombobulated. :) Sorry. I am so upset about this whole thing. I often wonder if these endos should be brought to the attention of some board of review, and they should know that 315 carbs is way too much for a 4 year old!! I usually don't get very emotional about much in this forum, but every time I see a newbie parent come on this board with a small child that was given NPH (like mine), I get really upset.

It hits home because I know what you're going through. However, our endo saw the need for her to get off of NPH right away, and she scheduled an emergency visit to do Lantus. My endo is very old school, but she's coming around from what I hear. I don't use her for any dosing advice, so that's fine with me.

Now, some people do great on NPH, and there is a broad group of parents and individuals that know how to use it to it's best advantage. I also hear they know how to use it properly in Europe, but North American endos prescribe it in a very dangerous manner. I have no clue as to why.

I agree with everything you said. Its a real sore point for me, seeing young children put on NPH. I know it works for some people, but in all honesty the vast majority of former NPH users on CWD have had bad experiences with it.
I think of it like this- would doctors prescribe decades-old treatments to cancer patients, when newer treatments are proven more effective and give better quality of life? I think not. why is it ok for diabetes? Mapoe4, I think you should find a new Endo. :cwds:

[Skyefire]

Marsha
I think one of the reason endo's prescribe NPH is it is almost always covered by insurance. I know Lantus was not covered by mine at first until I fought it. I was told they left Phoenix on NPH until the figured out his insulin needs, then we changed it.
I also know that after talking to my endo and asking LOTS of questions, because I was not happy with NPH, that they use NPH because it is easy to make changes to the dose, and a lot of children do not need 24 hour insulin right away. So they use NPH because it does not linger in the system like Levemir and Lantus, so easier to adjust up or down. as the needs change for the first few weeks.
My nephew is on NPH, and has been for almost 3 1/2 years, They are very reluctant to take him off the NPH because of his insulin needs. He has just started using NPH at bedtime. My SIL was not pushing the matter, until Phoenix was dx'd. Then I started telling her about the other insulins and how they work.
I find his care is very all over the place. But he is a hugh eater and loves to graze. but he is still ranges from low to High all day, it is a rare day that he runs normal all day. Phoenix has might tighter control over his D. They are now thinking of pumping. Funny she started pushing that once Phoenix got approved for his pump...lol

Needless to say I think NPH is an OK, if used correctly, and not giving high doses to small children, then forcing them to eat.

[twodoor2]

Marsha

I think one of the reason endo's prescribe NPH is it is almost always covered by insurance. I know Lantus was not covered by mine at first until I fought it. I was told they left Phoenix on NPH until the figured out his insulin needs, then we changed it.
I also know that after talking to my endo and asking LOTS of questions, because I was not happy with NPH, that they use NPH because it is easy to make changes to the dose, and a lot of children do not need 24 hour insulin right away. So they use NPH because it does not linger in the system like Levemir and Lantus, so easier to adjust up or down. as the needs change for the first few weeks.
My nephew is on NPH, and has been for almost 3 1/2 years, They are very reluctant to take him off the NPH because of his insulin needs. He has just started using NPH at bedtime. My SIL was not pushing the matter, until Phoenix was dx'd. Then I started telling her about the other insulins and how they work.
I find his care is very all over the place. But he is a hugh eater and loves to graze. but he is still ranges from low to High all day, it is a rare day that he runs normal all day. Phoenix has might tighter control over his D. They are now thinking of pumping. Funny she started pushing that once Phoenix got approved for his pump...lol

Needless to say I think NPH is an OK, if used correctly, and not giving high doses to small children, then forcing them to eat.

Thanks Autumn,
I can only speak from my experience, and you are correct, NPH is covered more than Lantus. However, my insurance covered Lantus, and our endo still prescribed NPH. She also prescribed way too many carbs for my 4 year old, so much so she was at the point she was throwing up. I was so angry, and the only reason I found out about Lantus was because of this forum. Now why is that?! I had thought my whole life dealing with this disease was going to consist of force feeding my daughter. My big issue is that many endos do not even talk about different insulin regimens with their patients and allow them a choice.

Mapoe4, did you even know that Lantus existed until you came to CWD???

NPH IS OK if used correctly, and I did mention that, but I keep hearing horror stories like this one where there's a small child who is being force fed. That makes me so upset. The problem is that these endos DO NOT understand how to use it properly. My endo doesn't even know how to use Lantus properly, but thank heaven I figured that out.

[mapoe4]

I didn't know about any of them til I came here

[Skyefire]

Thanks Autumn,
I can only speak from my experience, and you are correct, NPH is covered more than Lantus. However, my insurance covered Lantus, and our endo still prescribed NPH. She also prescribed way too many carbs for my 4 year old, so much so she was at the point she was throwing up. I was so angry, and the only reason I found out about Lantus was because of this forum. Now why is that?! I had thought my whole life dealing with this disease was going to consist of force feeding my daughter. My big issue is that many endos do not even talk about different insulin regimens with their patients and allow them a choice.

Mapoe4, did you even know that Lantus existed until you came to CWD???

NPH IS OK if used correctly, and I did mention that, but I keep hearing horror stories like this one where there's a small child who is being force fed. That makes me so upset. The problem is that these endos DO NOT understand how to use it properly. My endo doesn't even know how to use Lantus properly, but thank heaven I figured that out.

I agree I only heard about Lantus from this site as well, I was very upset with Phoenix on NPH, you might even remember some of my post expressing my stress and upset, I do find endo's seem to push higher doses on all insulins , with out listening to the parents. I just have a way of driving them crazy until I get what I want...lol I even got to the breaking point that I threatened to punch one of the endo's in the mouth for getting pissy with me over his care when I knew it was dangerous, and he was going to go low if I treated him the way she wanted me to. She actually called me a bad parent!!!! That was the breaking point for me, and me taking a bigger stand on his D care. I wrote her up and reported her to the board of our hospital.

:o they did make me meet with the social worker...lol over my anger issues.

I totally understand your upset I feel the same way, and have been blessed 10 fold for finding these forums.

[wilf]

Sorry I'm late to this thread.

You're pretty new to the D and have lots to learn, and others have given good suggestions on where to start.

If it were my child, I'd start reducing the NPH and the food. I'd do it gradually over a period of a week or so, with the aim of cutting down the NPH to 4 units in the morning and the carbs to maybe 150 over the entire day. Done gradually, you can see how he responds.

I'd also start testing at night, to make sure that the night-time dose is not causing overnight lows. If he ever goes below 70 you'd want to reduce the night-time NPH a little too.

[twodoor2]

She actually called me a bad parent!!!!

:eek:So you express concern and worry, and the endo calls you a bad parent. I wonder where some of these people get their medical degrees. I better stop now while I'm ahead. I feel fumes coming out of my shirt.

[Skyefire]

Sorry I'm late to this thread.

You're pretty new to the D and have lots to learn, and others have given good suggestions on where to start.

If it were my child, I'd start reducing the NPH and the food. I'd do it gradually over a period of a week or so, with the aim of cutting down the NPH to 4 units in the morning and the carbs to maybe 150 over the entire day. Done gradually, you can see how he responds.

I'd also start testing at night, to make sure that the night-time dose is not causing overnight lows. If he ever goes below 70 you'd want to reduce the night-time NPH a little too.

Mapoe4, just wanted to let you know, Wilf is probley the most familiar and comfortable with NPH, He has very good knowledge on how it works and the best way to make changes! I know Marsha will agree with this!

[Skyefire]

:eek:So you express concern and worry, and the endo calls you a bad parent. I wonder where some of these people get their medical degrees. I better stop now while I'm ahead. I feel fumes coming out of my shirt.

HAHAHA I know, she had to apoligize to me and then she even admitted she was wrong

[Skyefire]

:eek:So you express concern and worry, and the endo calls you a bad parent. I wonder where some of these people get their medical degrees. I better stop now while I'm ahead. I feel fumes coming out of my shirt.

Oh yeah I did tell her at the time that "there was no sweet way in Hell I was giving him insulin, and killing him, and she was out of her ever loving mind if she thought I was" She took that as a bad parent. Oh well if that is what it makes me, I am fine with that, he is alive and health on diluted now. I can laugh about it now but not that the time!

[mapoe4]

wilf I have heard good things about you from reading different threads. I only have one other problem and that is my DH is not going to go for this so I am also trying to think of a way to do this with out a fight. He doesn't do any of John's testing or shots (not saying it in a bad way he works all day and I stay home). If you might be able to give me a little more info on how to lower his insulin to met his carbs I would appreciate it. I am a bit scared on how to do this by myself. He is on 7 units in the am and 2 units in the pm of humilin NPH

[twodoor2]

Oh yeah I did tell her at the time that "there was no sweet way in Hell I was giving him insulin, and killing him, and she was out of her ever loving mind if she thought I was" She took that as a bad parent. Oh well if that is what it makes me, I am fine with that, he is alive and health on diluted now. I can laugh about it now but not that the time!

Well good for you. I feel that if a doctor is giving bad advice or telling you something questionable, you have every right to speak your mind. I cannot stand doctors that think they're some sort of omnipotent Zeus-like being that dishes out orders, and you should blindly take them without question. Because of your dilligence, your child is safe. I just worry about the parents getting all this bad NPH advice from their endos and they blindly take it. That really scares me, and I'm sure it's extremely prevalent, and many of them do not have the fortune of finding CWD.

[twodoor2]

I know Marsha will agree with this!

Yep!! Wilf is better than most endos on this subject.

[danismom79]

wilf I have heard good things about you from reading different threads. I only have one other problem and that is my DH is not going to go for this so I am also trying to think of a way to do this with out a fight. He doesn't do any of John's testing or shots (not saying it in a bad way he works all day and I stay home). If you might be able to give me a little more info on how to lower his insulin to met his carbs I would appreciate it. I am a bit scared on how to do this by myself. He is on 7 units in the am and 2 units in the pm of humilin NPH

Please, please, please give us more information:
bg readings and time
timing of doses
time and carb of food

It's so hard to figure things out without all of this info.
I'm pretty new to this as well, but when the NPH starts acting a little wonky, I reduce (or increase) by half a unit at a time.

[wilf]

wilf I have heard good things about you from reading different threads. I only have one other problem and that is my DH is not going to go for this so I am also trying to think of a way to do this with out a fight. He doesn't do any of John's testing or shots (not saying it in a bad way he works all day and I stay home). If you might be able to give me a little more info on how to lower his insulin to met his carbs I would appreciate it. I am a bit scared on how to do this by myself. He is on 7 units in the am and 2 units in the pm of humilin NPH

Thanks for your confidence.

I am obviously not a doctor or endo, and I strongly recommend that you discuss this with yours..

That having been said, I find it is often helpful if you come to them with a firm plan - and then ask them if it sounds ok.

I posted a bunch of questions in your thread about the low - if you can answer those then we can get to work in making a plan to present to the doctor/endo.

I've reposted the questions here and added a couple more:

1) When does he get his morning NPH injection? Where does he get it?

2) How much insulin does he get in total in a day (I'm thinking 9 units, but it would be good if you could confirm), and how much does he weigh?

3) Does he get a morning snack?

4) What does he have for breakfast?

5) What time does he get his injections?

6) Does he get evening/bedtime snacks?

7) What is his meal plan (how many carbs is he supposed to get when)?

I'll wait to hear back from you.

[mapoe4]

1) When does he get his morning NPH injection? Where does he get it?
@ 8-8:30 in his arm can't convince him anywhere else
2) How much insulin does he get in total in a day (I'm thinking 9 units, but it would be good if you could confirm), and how much does he weigh?
was nine units goes down to 8 tommorrow @ 37 lbs
3) Does he get a morning snack?
yes @ 2 hrs after breakfast
4) What does he have for breakfast?
eggo waffles with milk or cereal with milk
5) What time does he get his injections?
am between 8-8:30, pm between 6- and 6:30
6) Does he get evening/bedtime snacks?
bedtime snacks
7) What is his meal plan (how many carbs is he supposed to get when)? 45-60 per meal and 30- 45 at snack it was 15- 30 at snack but when I called and told them he was still hungry after his snack they told me to increase it and now that I tell them that he is in the honeymoon phase they won't decrease it. I give him close to 30 for snacks I don't make him eat anymore than he can at snack tme.

sorry it took so long to get back to you I have had a ruff day with myself.

[wilf]

1) When does he get his morning NPH injection? Where does he get it?
@ 8-8:30 in his arm can't convince him anywhere else
2) How much insulin does he get in total in a day (I'm thinking 9 units, but it would be good if you could confirm), and how much does he weigh?
was nine units goes down to 8 tommorrow @ 37 lbs
3) Does he get a morning snack?
yes @ 2 hrs after breakfast
4) What does he have for breakfast?
eggo waffles with milk or cereal with milk
5) What time does he get his injections?
am between 8-8:30, pm between 6- and 6:30
6) Does he get evening/bedtime snacks?
bedtime snacks
7) What is his meal plan (how many carbs is he supposed to get when)? 45-60 per meal and 30- 45 at snack it was 15- 30 at snack but when I called and told them he was still hungry after his snack they told me to increase it and now that I tell them that he is in the honeymoon phase they won't decrease it. I give him close to 30 for snacks I don't make him eat anymore than he can at snack tme.

sorry it took so long to get back to you I have had a ruff day with myself.

Hey not to worry, we all go at the pace that our lives allow here.. :cwds:

Thanks for the details. John is clearly honeymooning. If he wasn't being stuffed so rediculously, my guess is he'd only need about 6 insulin units per day. I don't think the meal carbs are too unreasonable, he should be up for 40+ carbs if he's hungry.. But the snack plan is just way too much. 10-15 carbs per snack is enough to keep the edge off any developing hunger, but also small enough that it won't spoil the next meal or his blood sugar levels..

So if it were my DD I'd be working on getting there (ie. 6-7 units per day, with a meal/snack plan that fits), and here's how I'd do it:

• I'd tell the medical folks that 1) I didn't ever want to see a low like you had today; and 2) the snacks are way too big.

• I'd tell them the problem is that there's way too much insulin, which is a) causing bad lows, and b) making it necessary to eat way too much food.

• I'd let them know that the low and the necessity to overeat are not acceptable, and I'd ask them to help reduce the insulin dosages (and the carbs for meals/snacks) down to a level that I thought my child could handle.

• And then I'd tell them that level (of carbs) that my child could handle, ideally with the help of a dietician but otherwise I'd do the math myself and just tell them.

• And I wouldn't take no for an answer, though I'd always politely listen to reasons given in response to what I was saying..

If one does the math, then your current meal plan is about 270 grams per day. But my guess is that all John needs is 40+ carbs per meal and 10-15 per snack, for a total of about 150 grams of carbs per day (you will know the actual amounts much better, but I just want to get some numbers on the table here). That's 44% less carbs than he's being stuffed with, but that doesn't mean he would need 44% less insulin. Some of what he's getting is basal insulin, which he needs to survive and thrive. But obviously an insulin reduction will be needed if his carbs are reduced - my best guesstimate is from 7 units daytime to somewhere between 4 and 5 (if carbs were to be reduced to 150). Your medical folks will have their own ideas and I would listen carefully to what they say.

But at the end of the day, the thing is to set a goal and then work towards it. Good luck.

[mapoe4]

That's about what I was thinking not the numbers like you put it but the idea. because I don't know how to do the numbers yet. these are the numbers we had last night from dinner til morning 80 after 2 hrs 98 after 1 1/2 hrs 164 2 1/2 hrs 142 9 am 68.

[wilf]

That's about what I was thinking not the numbers like you put it but the idea. because I don't know how to do the numbers yet. these are the numbers we had last night from dinner til morning 80 after 2 hrs 98 after 1 1/2 hrs 164 2 1/2 hrs 142 9 am 68.

Those are fine numbers, and confirm my sense that he is honeymooning (still producing a good bit of his own insulin). What was his last sugar before he went to bed? Did you take a reading overnight - and if so at what time and what was the number?

The morning reading of 68 is a bit on the low side, so I'm trying to get a sense of whether evening NPH needs to be reduced as well.

[mapoe4]

7-4: 7pm-80 /9:30 P/98 11:30pm-164 /7-5: 2am-142 /9 am 68./ 11am 155 went in pool 12 pm 71 eating lunch
He got 2 units NPH last night and 6 units this morning

[mapoe4]

He had a banana and @ 6 oz juice for breakfast and 4 cheese crackers and @ 5 oz juice for snack couldn't get him to take anymore Lunch is a peanut butter and Jelly sand and a 4 oz yougurt still trying to get him to drink some more juice @ 2 oz

[wilf]

7-4: 7pm-80 /9:30 P/98 11:30pm-164 /7-5: 2am-142 /9 am 68./ 11am 155 went in pool 12 pm 71 eating lunch
He got 2 units NPH last night and 6 units this morning

Thanks for posting this! Excellent that you got that 2 am measure, which indicates that there's not a problem with early in the night lows - given the bedtime snack. No need to measure 2 am after this.

But if you're up for it, I'd like to ask that you measure overnight tonight at 5 am just so we see what is happening later in the night. The drop from 142 at 2 am to 68 at 9 am can be from one of 2 things:

1) too much NPH, pulling his sugars down

2) his own body's insulin production, pulling him to where it wants blood sugars to be (68 is very close to the level that healthy people wake at)

It may be that he could get by just fine with a smaller bedtime snack - the 5 am reading would help figure that out..

[linda]

em wasnt dxd until 10, but she also was a small meal eater at school and we also had to find ideas, i think she did well with those cereal milk bars? not too large but carb packed (and protein too)

[mapoe4]

I haven't looked at the cereal bars never thought about that one I will look for them next time I go to the store thanks.

I will try to do the 5 am but I am not one to here the alarm I will try to let dh know to set it for me.

[danismom79]

He had a banana and @ 6 oz juice for breakfast and 4 cheese crackers and @ 5 oz juice for snack couldn't get him to take anymore Lunch is a peanut butter and Jelly sand and a 4 oz yougurt still trying to get him to drink some more juice @ 2 oz

Another thing I'm wondering is whether his breakfast and snack is digesting a little too fast. Maybe you can try some protein at breakfast to hold him over. Fruit and juice might not last long enough.

[mapoe4]

Ok I did get up at 5am (amazing that I did that) John went to bed at 10 pm with a 170 he had a very good snack at 9 pm (bg 81 before snack) 5am- 104, 9am- 100