Im hungry

will I ever stop hearing this? My daughter lost 22lbs over a few months in a week she gained 12 back and I am pretty sure at least another 5 since monday. She isnt bony at all anymore and is starting to get a little belly even. She eats all day long. I was told she would be eating a lot but I am not sure if she is getting enough at her meal times or not. She has entered a really picky phase so that does not help. She isnt big on meats or veggies except broccoli. She is on 60 carbs for breakfast lunch and dinner and 15 for her 3 snacks. I am running out of free snack ideas between her main meals and her carb snacks. Do I ask to bump up her carbs or just find more free fillers during her meals? Or just let her eat all the dang time?

 

Today she has had

B- 3/4 cups life cereal, part of a banana and a full cup of milk

then she had a bunch of peperoni close to 30 pieces and a string cheese and a jello cup

carb snack she had peanuts

more cheese and 2 beef sticks

Lunch- a small lunchable, milk,  fruit cup and a mixs of peanuts and sunflower seeds

she had more cheese and a beef stick

 

that seems like a lot of food to me so far and the day isnt over. She was about 75 before she lost her weight. Last monday she was 53 this monday 64 I think. I dont want her to balloon up and over 75 which is a healthy weight for her height.

Oh do highs make you feel hungrier when you are not? So far her high today was 143 so not bad and her low was 76.

 

Ok enough questions for one post I think sorry.

when I was her age and into my teens I ate, ate, ate like there was no tomorrow. I was -always- hungry....except when I was high. I never wanted to eat(and still don't) when my blood sugar is high..

it could be hormones from her growing(that was always my problem)...in which case it won't be ending anytime soon and you should look into making sure she keeps active to help balance her levels, food intake and weight.

or maybe she isn't getting enough. are you guys on an exchange diet or carb counting? i am kinda confused as to why she's limited to 60grams of carbs for breakfast....

when it comes to weight, don't forget that it fluxates a lot between morning and night...some days i'm 155, other days i'm 145-150. i was always at the very limit of "healthy" for my height the BMI scale growing up but now sit at a pretty healthy weight for my age and height(tho technically still on the highest scale I can be for my height). BMI is the biggest load of crap ever though, so I would ignore that personally.

none of this probably helped, but i thought i'd drop off what i remember from being a kid.

I have no clue what she is on or what is called rather. She is on a set number of carbs for each meal. She gets her insulin before breakfast and before dinner and that is it. We call a case manager from the hospital she was in and give her her numbers and she tells us the amounts of the nph and novalog to give her. Actually she is starting to ask us what we thing she should be getting. We have not even been home a week from the hospital yet.

When I was diagnosed I was told that i would gain all my weight back that I lost because its the weight that my body wanted to be at... like "preset" so to speak. Her body is probably finally realizing that it's getting the nutrients it needs therefore its going to tell her she's hungry until shes back at her "preset" weight. Hope that makes sense. I wouldn't limit anything until it's noticeable that shes going to be gaining more weight than what's healthy for her height and age. Why is she limited to 60 carbs? Are you carb counting or on a sliding scale?

As far as highs making me feel hungry - never. If I'm hungry at a strange time during the day - I automatically know I'm low. Of course I check to double check but I almost always right.

As far as snacks - anything with protein would be good so it helps to keep her more full. Peanut butter sandwiches were always my thing until I ate way too many and got really sick of them or peanut butter on Saletine crackers are really good (i may just have some now...) Sugar free jello cups are GREAT with whip cream on top (great carb free "desert" substitute) otherwise I just keep going with what your doing cheese and the beef sticks. Does she like salami?

I would talk to her doctor and maybe a dietitian. I'm going to see one of those next week so that I can be aware of how many carbs I should be eating at each meal to maintain a healthy weight.

Good luck!

[quote user="Jessica "]

I have no clue what she is on or what is called rather. She is on a set number of carbs for each meal. She gets her insulin before breakfast and before dinner and that is it. We call a case manager from the hospital she was in and give her her numbers and she tells us the amounts of the nph and novalog to give her. Actually she is starting to ask us what we thing she should be getting. We have not even been home a week from the hospital yet.

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ah so a fixed dose based on a fixed diet. that's kinda like the exchange diet i think..i remember being on something like that when i first started...tho i obviously can't remember the name cuz i was 6..cuz i remember having a chart in our kitchen that showed how much of the plate should be taken up by each thing(starch, protein, etc) for breakfast, lunch and dinner. ...we stopped doing that about two years in i think haha

i would ask about carb counting...as much as i personally hate it after 14years of fixed doses, it might make things easier. means she's only taking insulin for what she's eating and can eat a big more often probably if she's hungry. then if she wants to eat a meal that's 80g, she can for breakfast.

[quote user="Jessica "]

I have no clue what she is on or what is called rather. She is on a set number of carbs for each meal. She gets her insulin before breakfast and before dinner and that is it. We call a case manager from the hospital she was in and give her her numbers and she tells us the amounts of the nph and novalog to give her. Actually she is starting to ask us what we thing she should be getting. We have not even been home a week from the hospital yet.

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She doesn't get insulin before lunch? That's odd... It's nice you have someone to call. Are you going to be meeting with your doctor anytime soon? Once you get to carb counting everything gets more easier as far as giving insulin for what she eats. Limiting carbs can be difficult but hang in there!

[quote user="Melissa T"]

[quote user="Jessica "]

I have no clue what she is on or what is called rather. She is on a set number of carbs for each meal. She gets her insulin before breakfast and before dinner and that is it. We call a case manager from the hospital she was in and give her her numbers and she tells us the amounts of the nph and novalog to give her. Actually she is starting to ask us what we thing she should be getting. We have not even been home a week from the hospital yet.

[/quote]

She doesn't get insulin before lunch? That's odd... It's nice you have someone to call. Are you going to be meeting with your doctor anytime soon? Once you get to carb counting everything gets more easier as far as giving insulin for what she eats. Limiting carbs can be difficult but hang in there!

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She probably doesn't get insulin before lunch because she's newly diagnosed and a kid. I didn't start taking insulin at lunch until grade 8, even tho i had been doing my own shots(under supervision tho) since i was 10. I think it's still a common occurance for younger kids recently diagnosed..especially since it's only been a week out of the hospital for them.

don't worry or focus on her weight. especially when she's only 9 years old. focus on her diabetes care, checking her blood sugars, and making sure she gets her insulin. at her age, her weight is going to fluctuate a lot because she is growing. her weight isn't going to settle or stabilize until she is done growing--typically her late teen years. now that her body is properly utilizing it's food, she is going to gain weight. essentially, before diagnosis, she was starving despite eating. now, her body is putting the food to good use. she will be hungry--that is okay.

you can try introducing her to new foods or reintroducing foods she previously has said she doesn't like. our tastebuds change every 30 days, meaning we may like different foods. my tastes have changed greatly over the last few years. she may realize she'll eat more (and different) foods the more often they are available to her (i recommend the book: secrets of feeding a healthy family by ellyn satter).

for me, when my blood sugar is high, i don't feel hungry. i usually feel sick to my stomach with nausea and thirst and sometimes a headache. i feel absolutely starved when my blood sugar is low. i feel as though i could eat the house and not get enough food.

everything is still very new to you. it will get easier with time, especially as your daughter begins to take control of her own care. she is young and will adjust quickly to her new life. good luck in the future. i hope things go well for you, your daughter, and the rest of your family.

No her numbers before lunch are not all that high right now and she is normally at school during that time. Her lunch numbers have been around in the 140's but her one insulin peaks at that time and she doesnt spike after lunch at all. The lady we call has been doing this for 15 years and everyone loves her. So I think I trust her. Today she had 18 of her intermediate insulin and 2 units of her fast acting. It changes based of her blood sugar numbers.  The doctor thing is a little tricky right now. Our family doctor says he can manage her case because there is only 1 endo in our town and she deals with adults. We can go to a Barbra Davis center which is about 3 hours away and then after that see a endo from there that comes closer to us about an hour away. Big thing is we have to be able to afford the trips which right now we cant.

It's really worth it to get into an endo who can get her on lantus and novolog/humalog. NPH is intermediate acting, so it often means people can not take shots with lunch, but it has a pretty severe peak and can lead to severe lows, especially in someone with varying levels of activity, which as a 9 year old, you should have! Even if it's a three hour drive, see if you can get in soon. Your daughter will thank you. 

Don't worry about her weight. If you do, she'll start to worry about it, too, and that sets her up for some obsession and eating-disordered behaviors, which are already more likely in someone who's diabetic. Focus on controlling the diabetes and keeping her healthy, and let her know that you think she's doing a great job with it, too!

For the first two months after I was diagnosed, long after I got my weight back up, I was ALWAYS hungry. I would eat and eat. I ate so much sugar free jello I thought I was going to turn into a pile of sugar free jello. As I got my levels under control, my appetite got under control, too, but I wasn't worried about weight or health, just this ridiculous hunger that I couldn't get rid of. If she's hungry, let her eat! Encourage healthy food, of course, but let her eat.

I can't imagine trying to deal with a new diagnosis over the holidays. See if you can talk to an endo about a plan for holiday dinner, if you have some special traditions food-wise, or if you have lots of cookies. See if you can help her not feel deprived, by making sure the rest of the family is eating the same way she is as much as possible.

And remember that you are doing everything you can, so keep up the good work, and keep asking the good questions online!

I hope this doesn't sound lecture-y. If it does, I plead 3 AM insanity. Good luck, and happy holidays.

I am chiming in here. Excuse me if I come on strong about this; I don't know you personally and may express strong feelings about this which are based on my own life experience as a T1 female child.

My doctor was obsessed with weight. He used the BMI chart. I look at pictures of myself as a kid, and I was thin. My mother believed the doctor because where she came from, all doctors were just "experts." I have since learned that this doctor was not healthy and that he did a lot of things that were far from psychologically sound. A lot.

Constant scrutiny is what I went through. I think it was based on fear.  I was a young lady, just approaching adolescence, and I was being controlled in every sense of the word. Controlling behaviors and constant scrutiny are demonic in their effects, most especially on a young T1 who is probably already bombarded with unrealistic, cruel ideas of what all females ought to look like. It is humiliating and degrading to any person's spirit to be examined for weight gain day in and day out. My father (whom I love from a distance) subjected both my mother and I to that degradation for years. It is an inherited practice. It also, inevitably, broke the family into pieces.

Why don't you want her to "balloon up?" Do you weigh her every day? Why? If it's doctor's orders, why does the doctor order this? Weight gain and loss happens with T1. BMI is a 19th century artist's (was it artist...CHLjoe can tell you) conception of what people should look like. It has no scientific basis at all. Weight is not magical. It will not prevent (and may, if zealously sought, cause) complications.

I know two T1 women who have severe eating disorders. In both cases, the disorder had its roots in the family dynamic. Every item was evaluated before it hit their mouths: "Why are you eating that! Don't eat so fast!" I don't think there was any lack of love in either family, and I don't think either family wanted their daughters to develop bulimia or anorexia, but it happened.Even after one daughter had been in coma more than once, had serious complications for bulimia, her mother still refused to stop preying on her whenever they were at the table together, defensively lashing out at anyone who questioned this treatment. I don't think her mother could help it; I don't know why she kept on at it. I still don't understand that. This is a diversion...

A doctor is not always an expert. Some are dangerous. I wish this were not the case, but it is. My doctor was "fabulous," I think mainly because he earned a reputation as being a comforting, absolute-statement-delivering messiah, but he was not. His patients told a different story. He was a Father Knows Best for the parents, and a disturbing, terrible person to the kids.

I am relating personal experience. I am not indicting or labeling your situation. Please consider these experiences as worst case scenarios.

In terms of high blood sugars, I feel sick when they're up for brief periods, and ravenous when they are consistently high. Controlled levels were nigh unto impossible when I was ages 8-16 or so; I came out okay, from the A1C point of view.

 

I dont want her to balloon up because being over weight isnt healthy. I dont go by charts and such I go by how it looks on her for her shape and size. I do the same for myself and am no skinny perfect one. I have struggled with being over weight most of my life and dont want that for her either. My boys are autistic and are over weight which is typical for autistic kids. They get teased a lot I dont want that for her either she is shy and very sensitive. I do not say anything about her weight to her ever. I know what that can do but I am concerned about how much food she is eating. I know she needs to gain back her weight but to me its insane to eat as much as she is. More so when she  has never been a big eater before. We have only had a dx for a little over a week. I wanted to know how normal this insane hunger is. I dont want her to gain 50 extra pounds because that is no more healthy that picking on her about what she eats which I would never do. She was weighed at the doctors monday and the monday before that when we took her for being sick. 

 

We do plan on getting her to a endo as soon as we can afford it. No later than February but hopefully mid January.  We have no savings and my husband had to take the week off of work when she was in the hospital. So I have to get caught up from that before I can get enough gas in my car for a 3 hour drive. This is not how I want it but my reality. If I could go tomorrow she would be there.

hi Jes,

I am surprised that she was not transferred to a hospital with a pediatric endo... Brenna was transferred next day to our local childrens hospital where we were given a ton of info, and signed up for educational classes, we have been to three already and have learned alot.

We also were introduced to an EXCEPTIONAL team of dr's, nurses, and nutritionists. These people do not make me feel stupid for calling at 10 pm  freaking out because my husband forgot to give her the bedtime lantus, or when brenna sneaked into the snack box or ate a few apples...

I believe that knowing that I am not left alone to handle this life changing diagnoses has kept me from loosing it- and living in the constant fear that I will do something wrong and it will seriously affect my daugher.

I suggest that even if you cannot make it to the endo right away, call them and set up contacts you can call in an emergency, or "freak out" moments, which you will have, if it hasnt happened already.

NOW,

the basic plan must be followed, because this helps the endo see how your daughter is handling the insulin, and to see how the honeymoon stage is going. HOWEVER, I WOULD call and see if she can be bumped up to the next age level. we did this for brenna, she is 4 years old, but is extremely tall for her age, and eats more- so she was started on the same food plan as your daughter, to prevent her from being tooo hungry.

Two weeks later, she was switched on the flexible plan, which has worked wonders for us, as well as has regulated her GL;s.... she was fluctuating from 350 to 70 seemingly every day, and now she is having some lows 9due to some sick days, and honeymooning but now she is between 80 and 140 and we are extremely happy with this.

What worked for us was purchasing sugar free items such as frozen yogurt, popsicles, and also getting a ton of veggies... for non carb snacks ,

 

hope this helps!

 

We have a diabetes case manager she did suggest we go up to Denver to the Barbra Davis center with a team and endos and more education for us. No she highly recommended we do so and we will the minute we can afford to get up there. I guess calling wouldnt hurt any. Anyhow we call her and we can call her if we have questions but a lot of the questions I have can wait until I call her in the mornings my husband calls in the evenings. I figured they had her on this plan to see how she is responding but we only test before meals. I think we need to test after as well because her highs seem to be high and her lows are getting pretty dang low. Its so hard with the food and carbs some meals are lower carbed and its hard to get her to eat enough before she is full and other things are a little higher and she still wants more. So I will talk to her today and see if we can bump her up some. I did figure she was on this basic plan for something like that.

She eats veggies as a carb snack. 91 grams of raw broccoli is 6g  plus carrots I cant remember how many but its 8g of carbs plus 2 tbs of ranch is 2 so all together its 16g of carbs perfect for her snack. She eats it all tho and still wants more. So is this bad? Am I over carb counting cause I count every single one to make sure she isnt to high or two low. We can be within 5 either way but try to hit 60g of carbs with ever meal.

 

 

I would say that according to our nutritionist's advice, you probably are... We were told to not count the veggies, because the amount of carb in them is minimal. As for testing after meals, I would test only if she has a low before a meal- otherwise if you test within two hours after a meal, you will get false highs, etc. and TRUST ME! you do not want to panic! lol

What helped us with Brenna- she didnt always eat all her carbs at first- was when we bumped her up to the next plan, if she wasnt as hungry- we could always use the lower carb plan instead.

Back to the carb counting- if she is at 60 g per meal, I can give some suggestions using our meal plan we used when we were on the fixed plan.

breakfast- 1 c milk with 1 c sweetened cereal 1 apple or banana. = 4 carb points.

snack- slice of toast with butter

lunch- crystal light, 1 c mac and cheese, 14 pieces teddy grahams

snack- banana or apple

dinner- 1 c milk, 2 pieces of pizza, 1 cup veggies, sugar free popsicle

(only carbs counted for dinner are milk and pizza)

bedtime snack- 3 cups popcorn

also, how are they having you track her gl's? if you would like to messag eme your email i am more than happy to email an excel spreadsheet we were given by our team to monitor Brenna's GL's you could prob email to the team in denver so they can help you from a distance as well. just a thought. =)

you are prob freaking out a bit before the holiday and wondering what you can give your daughter? not sure if you knew that jello can be sugar free... =) as well as pudding, there are many sugar free substitutes for desert items.

i know it sucks- but once going on the flexible plan, you wont know what to do with yourself! =)

They gave us a paper flow sheet to use. We also have our personal log book that they gave us at the hospital. She still had glucose toxicity Up until a few days ago. her numbers have really been coming down until last night. She said we might have to change it and end up giving her 3 shots a day one at breakfast dinner and then bedtime snack time. She was 151 at dinner then 352 at 2 a.m. and 234 this morning but yesterday at lunch she was 76. Her day time numbers are not so bad but she keeps spiking at night. We are going to change her bed time snack tonight to see if it helps with the spiking. 

She has been eating the sugar free jello. I didnt see any sugar free pudding but I figured cause it was made with milk it wouldnt really matter. Its hard to think she can have the same things she did before just in moderation. Or at this point added into her carb meal plan. Right now the highs do not scare me as bad as the lows. I did not like that at all. When she is high she just gets grumpy. With lows her head hurts she gets shaky blurred vision and looks sickly. So I can see the lows more than the highs. I dont know just thinking and typing now lol. 

A flexible plan sounds awesome compared to this. So does the pump but she wants nothing to do with it. The thought of something in her tummy freaks her out to bad. I hope she changes her mind as she gets use to the idea of well all of this. If not oh well I wont push her.

I will go ahead and message you my email. It might be easier for me to use and keep track of over all for us. Thanks.

Hi Jessica,I think you are such a good mom-you are on here searching for help for your daughter.I feel for you because it has been just a short time and I remember the emotions of worry,fear,anxiety,feeling overwelmed,sadness etc.that can creep in.You have found a place that I would have given anything to have found when my daughter first got type1.Everyone here gets it-they understand.Have you reached out to JDRF ? Maybe they could link you to other families near by-you could carpool to office visits.I hope you have insurance but if not I think there are programs out there to help with that too. I wish you the best and you are never alone here-this place has real people with giood hearts.

[quote user="meme"]

Hi Jessica,I think you are such a good mom-you are on here searching for help for your daughter.I feel for you because it has been just a short time and I remember the emotions of worry,fear,anxiety,feeling overwelmed,sadness etc.that can creep in.You have found a place that I would have given anything to have found when my daughter first got type1.Everyone here gets it-they understand.Have you reached out to JDRF ? Maybe they could link you to other families near by-you could carpool to office visits.I hope you have insurance but if not I think there are programs out there to help with that too. I wish you the best and you are never alone here-this place has real people with giood hearts.

[/quote]

We do have insurance thankfully. Its not the best but better than nothing at all. Her meds and supplies will run us about 165 a month. Which for us is a lot but we will make it work we dont have a choice. I am going to get on the phones this evening with a few places and see what help is out there for us.I just remembered I think someone told us they give gas vouchers at the center up in Denver if so that will help and we will get up there sooner than later. So much to do in such a short period of time. My head spins so much I cant remember one thing from the next other than feeding her on time and how much and insulin doses. I have a note book with random stuff written all over it. I need to get more organized with that.

Hi Jessica. I hate to give you more advice, b/c I'm sure you're already overwhelmed! But, if it were me, I would call the pediatric endo now b/c sometimes for a new patient, it can take a few weeks to get in. Once you have gas $$, you don't then want to have to wait for weeks! Have you reached out to a local JDRF chapter or a church group or something to see if someone would volunteer to drive you after the holidays?

I hope you can enjoy the holidays okay. This time next year, you'll feel so much better and more confident. My opinion is, if she's hungry, let her eat! Her body is adjusting, so this is temporary. People w/ T1 do tend to gain weight more easily, but I know MANY t1's in great shape, and your daughter is so young now.

Once you get in with an endo, I suspect she'll be put on more modern types of insulin that will lead to fewer highs and lows (although they still happen, it's part of life w/ t1!). She'll also start you on carbohydrate counting where you count the carbs in foods as you are doing now, but then dose the short-acting insulin by how much she WANTS to eat. (e.g., with a carb ratio of 1:20, if I ate 100 grams of carbs, I'd divide 100/20 and take 5 units of insulin). Some endos even let children take a very fast acting insulin right AFTER they eat which allows you to see how much she actually ate rather than guessing. They'll also give you a correction factor to bring down highs.

Hang in there! It will get easier with time.