New and full of questions- insulin, carbs, gi diet etc

Type 1 and LADA
1

Hello all! I just joined this site hoping that when I have questions/need to rant I can find some people that understand what I'm talking about!!

My future stepson just survived his first year with diabetes. He's such a little trooper, great with his "go juice" as my fiance calls it and doesnt fight us with anything! He will be two in March, diagnosed at 9 months.

I have been looking through the forums and there are a few things I've noticed. Most people don't seem to be using Novalog but Humalog instead? Is it basically the same thing?

As soon as anyone finds out he is diabetic I immediately have to explain its type one because people look at me like it's my (our) fault because he is morbidly obese. We're currently going through the custody case for him and hoping to get primary. Slowly we've been getting more and more time with him and the better diet that we have him on has helped slow down his weight. Does anyone else have a type one child who is obese? We feed him 30 carbs or less per meal and snacks are generally under 10. I've noticed most on here are talking about 50+ carbs a meal! Is that because the honeymoon stage is over for them and bodies need more carbs then? Or is his carb intake suppose to be low because of his age? Does anyone else use the GI index to help manage BG? We've found for example, watermelon he burns right through, giving him a snack of watermelon with no insulin, he will still drop, but if we give him grapes and one graham cracker he stays level.

My fiance and I are really trying to understand all of his BG readings. With us he stays pretty much between 80-200 which is his current target range. However with his mother he shoots up sometimes close to 500, most days with her he stays in the 300's or upper 200's. We share his food records back and forth and while she does feed him a lot of junk, cheezits, popcorn, pizza crusts, rolls (sometimes just popcorn being dinner or a roll/breadsticks being dinner type of thing) even with her slightly changing his diet for the better lately( he's under 20 oz of milk a day finally! She used to give him upwards of 40oz!!), he still seems to be high with her while we're struggling to make sure he doesn't drop. She cut out his morning snack and he is always over 100 with her, we cut out his morning snack and he drops to mid 70's or sometimes lower. The only thing that we can come up with is between us giving him a lot of fruits/veggies and him constantly moving with us thats why there is a difference. His endo won't really discuss the differences with us because shes afraid of causing waves and dealing with the mother's reactions. The only thing his doctor has said to us is that he doesnt feel the mom is writing down all that she feeds him. Could that really be what it is??

When he used to start getting low, he would get glossy eyed and seem a bit lathargic or he would be unconsolable. Here lately, he'll still be giggling and playing and we'll check him and he will be in the 50s!! Has anyone else had their child just "get used to it"?

Speaking of lows, we were told to just give him cake icing when he is low, it used to affect him greatly, recently though it seems like even a whole tube doesnt do anything for him. We have some gatorade we tried the other day but he is really hit or miss with liquids. Any ideas of easy good to use items? His mother seems to be using dumdums?

He's currently on .5 of Novalog to every 20 carbs within 15 min of the start of his meal (recently changed it was .5 to 15) and 4 units of Lantus in the morning and 1 unit at night (also recently changed it was 5u in the morning only)

I know this is a lot in this post but I guess I'm just looking for some insights not to mention it just feels good to get this all off my chest to people who know this type of confusion!

Thanks for reading!

2

Sounds to me like you and the father are doing the right things. Just hang in there. It is frustrating for everyone who is around a diabetic.

3

Dear AndJ,

Welcome to this site. I know you'll find people who are concerned, loving, and helpful. You're taking on a real job; I admire your work at it and your questions show you're truly interested in helping this child.

Basic facts which you may already know: As you pull down carb grams and his weight, he will not need as much insulin. That includes the basal insulin, Lantus. I don't see how you can change doses, however, without the endo knowing he needs less when he is with you and being willing to work with you. Major problem! Do not let him ride in the 50s-70s. Get the target up to 120 and then use small amounts of food that you can see exactly what happens with each time he eats it. Your record will tell you how much less insulin he then needs. And that will include less Lantus as well. Do not feel you are doing wrong if you reduce the insulin dose when he is with you for a couple days.

Novolog is a short acting insulin just like Humalog. Too much Lantus often puts on weight.

Every starch like cheezits and pizza crusts and rolls will cause him to want more of the same. Popcorn is not in the same category as those starches, but the fat put on the popcorn can slow digestion and raise BG later. Veggies and protein, ham slice, chicken slices, will probably be the best thing you can give for snacks and it will help him carry that into later childhood and adulthood. Fruit will spike him. A 2.5" graham cracker can be 5-10 grams depending on the brand. A full sheet is usually 20-21.

He is in hypoglycemic unawareness if he's in his 50s and not showing signs of hypos. Yes he got used to it, so his target BG needs raising - and leveling through small amounts of carbs at a time. Adding exercise also means lowering insulin. Test before exercise, test after 20 min. to see what it lowers him. I suggest trying Smarties - 1 roll = 6 Grams. Not knowing his weight, I can't tell you the dose to give at a BG of 50. But each time you correct a low, write down how much grams you gave and test in 15 min. & write down where it took him. You will learn from reviewing what you've done.

You asked if bodies need more carbs when honeymoon is over - no. Bodies, even children, do with less carbs.

The GI index can be used to help lower BG, but the items to use are at such a low part of the scale, throw it out and use veggies and meats and eggs if he can tolerate them.

You said if you give him grapes and 1 graham cracker he stays level. 17 grapes = 15 grams carb approximately. Now look up exactly how many grams are in the graham cracker and count the grapes. Determine the total carb grams you gave. Find some other snacks that = that number of grams. You may have an indication of what amount grams can be used.

The endo's approach with you is cautious. I suggest also Childrenwithdiabetes.com Read thru the posts to find toddlers. And keep a good record of weight, exercise, exact foods with grams. Ask the endo at what age CGM and pump can be used.

I've just talked off the top of my head and hope you let us know your successes! Get back and reply on the post - give us his name or a made-up one we can refer to him as!

4

Hi and welcome to TuDiabetes! I believe there is also a parents forum on here where you may get more specific support. To respond to a couple of your questions: There are three fast-acting insulins, Humalog, Novalog and Apidra. They are all fairly similar and I think we all take a different one. I take Apidra which is a tad faster acting than the other two.

No I wouldn't say everyone on here eats 50 carbs or more per meal. We are a very varied community in so many things of how we treat our diabetes, and we vary from Bernstein low carb which is 30 per day, to people who eat whatever they want. I personally eat what I might call moderate low: under 100 a day. That works for me. We each have our comfort level with carb intake based on lots of things and you have to find what works for your stepson. In general, the more carbs the more insulin needed and if you are eating tons of carbs and taking tons of insulin to cover, you run the risk of gaining weight, developing insulin resistance and also miscalculating and getting highs or dangerous lows.

To treat lows (again we are all different) but I use glucose tabs. I find they are very fast acting and you can learn exactly the right number for you to take to raise your blood sugar by the desired points. Also people often have a tendency to overtreat because they feel very hungry when low and then they end up high. Using glucose tabs can keep you from overtreating.

I want to say you seem to be doing great working at educating yourself and giving 100% to help your little boy. I'm sure dealing with the mother. If this is not appropriate just ignore it, but if you feel that her treatment of her son's insulin is extremely inappropriate you can do a referral to Children and Family Services. Mistreatment or neglect of a medical condition is considered a form of abuse. Again, if this is not the case, just ignore.

5

You seem to have done a lot of home work already and I may not be popular in suggesting this , but I will anyway : I think ,that there needs to be much greater input by the child's Pediatric Endo and other Team members ( may have to change to another one ?) ...one cannot dismiss Medical input/advise . We may have a lot of experience in dealing with our own diabetes but please remember , we are all different .You are providing us with blood sugar readings of close to 500 , while the baby is with his Mom . The Endo has NO comments about these numbers ???

Yes, I do use the GI index method , for instance I eat boiled potatoes with the skin on , hardly ever mashed potatoes .

I wish Baby , you and partner well .Keep us informed , please.

6

Welcome! Wishing you success on gaining custody.

Novolog, Humalog & Apidra are the fast-acting insulin brands used most frequently. Some people react more favorably to a particular brand, but they'e very similar in action.

Diabetics handle carbs better in the honeymoon phase because they have some of their own insulin production. More carbs=more insulin needed. No, people past the honeymoon stage don't need more carbs.

People eat varying degrees of carbs dependings on their activity level, individual chemisty & because some people just won't eat less. I eat 30-35 daily so that I don't have to take large insulin doses. Larger insulin doses act less predictably than smaller doses, resulting in more highs & lows. Greater chance of miscalculations with larger doses as well that results in having to correct.

When he's dropping after eating something with a lot of sugar, he's had too much insulin, of course. Fruit shouldn't be used to correct lows because the fiber slows down the effect. Also hard to know exactly how many carbs are in fruits to correct without over correcting. Fast acting glucose is best. I use jelly beans, but lifesavers, skittles & others work fast also. One jelly bean has 1 gram of sugar. Once his BG starts coming up, give him a small amount of protein to help keep BG stable.

I think GI has limited value for Type 1s. Slowing down the effect of carbs isn't necessarily a good thing if the carbs hit when the insulin is gone. Sooner or later, those carbs will have an effect.

So sorry to hear about his 300-500's:( That's extremely dangerous. Any child being fed the diet you listed is terrible, but especially risky for an overweight child with diabetes. Lots of veggies is great. Fruit is sugar & doesn't help.

Our bodies adjust to being high or low when that's the constant state. The more lows the child has, the more he'll not feel them. Though, lows are a funny thing because some you can feel & some you can't. Dropping down from a high quickly are the easiest ones to feel.

The more a person weighs, the more glucose it takes to bring up a low.

7

Once the court case is over I think that will be such a relief that the diabetes wont even seem like such a big deal anymore lol! At the moment its constant paranoia because if we "mess up" at all we're worried about her lawyers trying to distort it. None of the lawyers seem to understand how different this child custody case is!!!

8

Very different & very difficult. My brother-in-law fought hard for custody of his sons who both have cystic fibrosis. Their mother didn't give them proper care, didn't give them the treatments they needed to survive. To make things even worse, she was an RN. Was a tough case because her side argued she knew far better how to take care of them because of her medical training. My brother-in-law won.

9

Is the fact that he's hitting BGs of around 500 being used as evidence for why YOU should be his sole guardians? Because it should. He could very easily go into DKA/a coma or die with BGs that high. His mother is literally putting his life on the line.

10

The endo is aware that his BG levels are completely
different with each parent however she just tells us
both to do the same thing and refuses to discuss the
differences with us. Also, his dietician refuses to
discuss anything with us, which is causing quite a
frustration as well. D's mom refuses to listen to
anything we say, even if it’s a dosage change that
his endo told us to do. Obviously this adds a whole
other dynamic.

She also freaks out whenever we try anything new
with him, take his BG in public etc. And since she
has him more than we do atm and is able to control
how much we see him we have to walk on eggshells at
all times.

Do you suggest trying to talk to his endo about
raising his target levels then? If he target level
is raised will he start showing signs of hypo again
when he gets lower? It's very scary for us because
he still isn’t talking even though he is almost two
so he can’t express to us that he feels bad. We've
been trying to teach him signs to communicate with
us better and we have noticed that he will do the
sign for milk when he is lower so we generally
(although his mother gets annoyed with us taking his
BG so much) will test him if he starts coming to us
and signing milk.

His amount of Lantus was just raised he used to be
on only 3 units a day so I doubt that is where the obesity stems from. He has been obese, recently
changed to morbidly obese by his doctors, since he
was about 9 months old. He is in the 75th
percentile for height (34") and off the chart for
weight (40 lbs). Although it has finally slowed he was gaining a pound or more a month.

We are using the Gerber graham crackers which are
reported as 5 carbs for every two. So when I say we
gave him grapes, we give him usually one ounce of
grapes and one graham cracker so about 7 carbs and
no insulin with that.

I asked so many questions about food because of
this...
This was last weekend days are back to back...
12:30am 295 .5u Nov
7:30am 166 4u Lan (11 carbs) Few bites of cereal 5
4 oz milk 6
10:30 284 he had to get blood work done so it was
taken before his blood work
1:00 cheese stick 0
2:00 112 1u Nov(32 carbs) 1/2 grilled cheese 15
5 french fries 5
8 oz milk 12
3-4 nap
4 6 oz milk
7:30 498 2u Nov few bites of PB&J ( wouldn’t eat)
8 6oz milk (bed)
11:30pm 359 1u

8am 432 4u Lan yogurt 16
1.5 Nov
11:30 192 1 Nov (33 carb) turkey and cheese sandwich
pureed apple
arrowroot cookie

12:00 8oz milk
12-2:30 nap
3 1/2 cup peach puffs (5 carbs)
5:30 353 1.5u (35 carbs) Nov 1/4 cup beef stroganoff
few green beans
croissant

8:00 pm 332 1u Nov. 6oz milk


This is the usual numbers that we see from her days.
Then you have our days...The following two are one
of our rough days and one of our more typical days (back to back),

(with his mom)7am 96 4Lan yogurt 16
(with us 8am on)
9:15 314 was being fussy so thought he might be low
11:33 76 (23 carbs) 4oz milk
Chicken and pasta wheels with veggies
(Gerber meal)
11:49 66 1/8 tube cake gel/1oz of Gatorade
12:06 134 .5 u nov
12:40-2:50 nap
2:59 59 (15 carbs) 1oz Gatorade
fruit twist
3:15 156 2 animal crackers 5
5:32 247 .5u Nov (32 carbs) 4oz milk
cheesy pasta with chicken and veggies
1/4 cup apple sauce
8:06 288 1u Lan

12:15am 95 (4carb) 3oz milk
3:16 154
7:18 186 4u Lan .5u Nov (20 carb) 1/4c oatmeal with
2.5 oz plum
1 oz grapes
11:32 122 .5 Nov (23 carb) 4 oz milk
1/2 pb and honey sandwich
1/2 cup green beans
12-2:30 nap
3:00 142 (7 carbs) yogurt
5:10 212 .5 Nov (25 carb) 4oz milk
1 cup whole grain chicken
noodle soup
1oz grapes

We won’t get the rest of the info for this day until
Tuesday.

But you can see the huge difference in days. With us
he stays generally in a steady range with her he is
bouncing. Why?? Diet? Exercise??

One more question I remembered while writing out the food records. She constantly writes that he wouldn't eat on his food sheets we have never had him not eat. We've had to change what he was eating like the other day he just wasn't wanting the grilled cheese. When someone is high do you think they might feel blah and not want to eat? It just doesnt make sense to me because he has a great appetite with us.

We will just have to call him D for now, but like I said once this court case is over we'll have adorable profile pictures and names for us all!

Thanks for getting back with me I know this is a lengthy response, but you took the time to write so much for us. :-)

-A

11

Oh believe me, we have considered calling child services and will quite possibly be filing for neglect against her if we do not get primary custody of him. For now though, our lawyers have told us to just remain calm and wait to see what the judges say. Like I stated in my one response people just don't seem to understand just how different of a situation it is with D.

I have considered the glucose tabs, but someone told me that they are very large and I'm a bit worried of the choking hazard with them. He tends to just stuff his cheeks until he gags. He is only up to 8 teeth with all four molars just break in, at the same time of course! (fun times ahead!) So I was thinking we might have to wait until he is a bit older for those?

His dietician when we went in for his last appt. said no more than 30 carbs per meal and obviously to cut out McD's, Dairy Queen, cheezits etc. which WE weren't feeding to him anyways. I guess with him having a weight issue as well, his rules for eating might be different than for other type one's. We'll just keep pushing the veggies and fruits(since fruits don't seem to spike him except melons those spike and crash/"get burnt")

Thanks for the response! :-)

-A

12

We have just started getting the endo to return phone calls for us. The dietician will only talk to us if we are in an appointment with his mother there as well. The endo seems to realize that his mother is a ticking timebomb and if you say one thing she doesnt like she will freak out. For example when it was suggested he eat a healthier diet she almost left his appointment with him she got so upset. So once again we are just praying that we get custody.

We have been playing with the GI index and for some things it really seems to be spot on but I'm getting a lot of different levels for red/yellow/green foods and its starting to get confusing. Do you have a website or a book that you feel really gives you a solid list of foods?

Thanks for your time!

-A

13

It could very well be that he's not eating because he's nauseous when he's running high. High blood sugars make many people feel sick to their stomach/headachey/all over 'blah'.

14

See and his dietician/endo suggested giving him more fruits. His mother had taken to feeding him a fruit twist or strip (gerber's versions of fruit roll ups) as his breakfasts and sometimes lunches even. His doctors said to try giving him more fresh fruits. Like I said in another post it seems like (and maybe because we keep the amounts low 1-3 oz) fruits don't spike him but generally keep him level.

We were thinking the GI might be good for him because with us he seems to just burn through his carbs so quickly, because we're assuming we get him moving much more than his mother does. We don't have tv in the house, we have a cat he loves to chase and a dog. He also has playdates every week he is at our house and since I only work evenings and his father only works weekends (we don't have any visitation on weekends) we both spend our days playing with him and working on the different things for his therapy. (He is in occupational, physical and speech therapy).

We have been mixing a "green" food with a "red" food to try and give him a decent balance. The red to bring him up for now (since he usually runs a little lower and so he can exercise without dropping) and then the green to last him until his next snack/meal.

Once again the issue I run into with giving him lets say a jelly bean, is that I worry about the choking factor. We don't generally keep juices in the house since I can't drink them and the fiance usually wont, but we might just have to buy some juice boxes I'm thinking to save him during lows even though he isn't always big on liquids.

Thanks for taking the time to read and respond!

-A

15

Good to hear that he won! Unfortunately she has had him most of these first two years so we're a bit afraid of the "she hasn't killed him yet" defense. We'll see what happens though!! Hopefully, they will take into consideration that this household has two trained and dedicated individuals to care for his needs.

16

We were wondering if that was the case. I mean we've never had him get over I think 275 with us? And even when he hit that it was just after having been with his mother. It makes sense though that lows would make you hungry and want food and highs would probably make you feel like you over-ate or something. I guess I had already kind of come to that conclusion but I really don't want to assume anything not to mention he is a bit odd, he even confuses his doctors. When he is sick he runs really low and constantly drops even if he is given 20 carbs with no insulin. Whereas his doctors kept informing us that sick would make him run high. It just seems like everyone has a different thought, "fact" or opinion of how things will work or how things "should" be.

17

The lawyers are refusing to use his records as evidence, they are afraid that she will start altering his records if they bring them into court. It's hard too because he does have a fairly low average with us, and she could equally argue that we are keeping him too low and risking hypo episodes. Like I've said before I'll just be really glad when the court case is over, having to deal with her is enough to make anyone want to pull their hair out!!!

18

http://www.the-gi-diet.org/lowgifoods/....

and another http://www.mendosa.com/gilists.htm

Hope this helps .

19

meant to say 295 and yes we've checked him like the above day and he was 315 but we hadnt given him anything that day, his mother had given him 16 carbs and no Nov. which ended up being good since he crashed later...why the crash?! *sighs and kicks herself* Should have trusted our guts and given him a small snack still but figured with no Nov. for breakfast that he would be fine, and his mother doesnt want us giving him a morning snack. She feels us giving him that snack is what is making him overweight. *sigh*

20

That's really unfortunate, because his records seem to point to the riskiest part of him staying with her (the risk for DKA)