are smaller children harder to control?

[Barry]

I keep reading of very wide swings in BG from parents of infants who I feel are very capable of doing what the endos ask, yet my own experience, as it relates to variation of levels, is much much better. My teenage son's insulin to BG numbers has always made sense. Shoot this much insulin, eat about this many carbs, and expect a BG of about this. Any craziness we could track back to our own mistakes.

Are smaller (babies and preschoolers) diabetics more apt to swing? 10,15 bg checks per day? BGs defying the ratios. Crazy 200 point swings. Is it just a mere matter of weight and steady growth that make the littles ones hard.

[Momof4gr8kids]

The comparison is like oranges, and apples.

For a baby, they can't tell you when they are high, or low. You have to judge by apearance, B/G checks, and other reactions. Babies are growing very rapidly always. Growth hormones interfere with insulin... plus weight is constantly changing, and I am sure there is more to it.

Julia is 5. She can't tell the difference between highs, and lows, but can tell you that her B/G is not quite right. Younger children get sick more frequent, that plays into it, because even so much as the sniffles can throw B/G out of wack. When Julia first started school her B/G ran higher, we had to bring her lantus up a full unit- she was only on 3 before that. Then she had sudden lows. We ended up going all of the way down to 2 units of lantus. She went through a growth spurt when we raised the insulin levels, but must have had insulin production pick up a little more after, because we went even lower afterwards. Every time we change like this we end up doing 8 plus finger pricks a day to make sure there are no lows in the middle of the night, and correcting lows, or highs. It is hard because the parent is sitting in the drivers seat, but can't see the road, or even feel it so to speak.

Another thing is, once the honeymoon ends, diabetes is harder to control. Even my DH who has not had functional islet cells for decades, and has long stopped growing has days that his B/G is off. Stress, illness, change in normal activity, ect can all change B/G's.

Everyones diabetes is different. Hopefully your son's D stays managable without any of the hard stuff.

Jamie

[bogusrogus]

Haley was 16months when dxd. She is 3 now, the big problem at first was in the beginning,is she crying because she's low/high or is she just fussy, she wasn't talking yet. So we tested all the time.:(

Than there's the activity level, one day their shot out of a cannon the next they just lay around, so when they are really active is makes the bg go down and when their not it stay pretty normal, but you also have to remember there stomach is a big as their fist and sometimes it takes longer to digest the food which in turn takes longer to get into the blood stream.

Oh did I mention the growth spurts? UGGGHHH those have really reeked havoc on Haley of lately. Plus she is senstive to the novoalog, so we have to watch how much is given, ex: morning she gets .5unit if bg is 200-275, 1.0unit if bg is 275 and above, evenging it's .5unit 200-325, 1.0unit 325 and above.

Hope that answers part of your question?

Vickie
mom to Haley (3)dxd 12-4-04
mom to Taylor(12girl) tweeanger:eek:

[Reagan's Mama]

Let me tell you about my 12 month old daughter's day today..........

830am - BG 198
1035am - BG 463
1218pm - BG 126
4pm - BG 129
635pm - BG 459
835pm - BG 563
1030pm - BG 123
1230am - BG 63
1249am - BG 130

It's been hell today. We did nothing different today from yesterday, yet we had moderate ketones and our highest BG since dx'd at 563. I have been scared to death all night. She isn't sick, isn't acting sick.

We just put her back to bed and I am typing this while she is crying herself back to sleep. I know for certain that when I go back in a few hours she will be high again because her growth hormones kick in about 2 or 3 am.

I am praying that if and when the pump arrives some of the crazyness will go away!

We've been told that anything and everything can and will effect her. Teething, allergies, colds, flus, growth, playing to hard, not playing hard enough. But not necessarily the same every time. That's where the games begin!

[rsmom]

I DEFINITELY think that the younger kids are more apt to swing from one extreme to the other. My son is almost 4 now (dx at 2), and we still see big changes in his numbers from one day to the next (when seemingly nothing is different in his routine or insulin doses). It makes it really hard to get "the" numbers for the pump, as every high or low could be caused by so many things. I also agree that the kids' unawareness of highs/lows makes it very tough - Ryan is just now getting really reliable with his ability to tell us he's low. Before now, we would have to test all the time and never really had any idea whether he would be high, low, or in between. Often when we expected him to be high he would be bottoming out, or vice versa - it was terribly frustrating experience (and still is at times)!!

Ryan can't really tell when he's high - if he's VERY high, he'll complain of a stomach ache, but by then he's in the 20's. So we test, test, test and then test some more.

His insulin needs, too - while getting more predictable - can change with the weather. What works one day doesn't the next, and no one really knows why. I think there's just so much growth and change going on in the little ones that it's hard to keep up.

[Ben'sMommy]

Ben was dx'd at 7 months. It was horrific! He needed TINY amounts of insulin. It was next to impossible to accurately draw up the amounts of insulin that he required. And yet if he didn't have it he would skyrocket in no time.
Growth spurts cause major upheaval as does teething, vaccinations, learning to walk, trying new foods etc etc.
D is horrible for anyone but is especially nasty in infants and toddlers.

Before he started pumping he was checked EVERY 2 hours 24/7. We had to change his insulin regime almost daily and he was having massive fluctuations which were leaving him tired, cranky and very, very sad. I could cry now dredging up such a dark, painful time.
It was terrible having to inject a baby and having to then force him to eat. Having to wake him up from a nice, cosy sleep to inject again and check bg's.

It's still very unpredicatable and the slightest change in routine will throw him off but it's geting a bit easier.

When he was dx'd I didn't know anyone who had a baby as young as him dx'd and didn't find this site until this year so we were totally alone and had to find everything out on our own.
I hope our experiences can help some of the people here with little ones.

[EmmasMom]

I keep reading of very wide swings in BG from parents of infants who I feel are very capable of doing what the endos ask, yet my own experience, as it relates to variation of levels, is much much better. My teenage son's insulin to BG numbers has always made sense. Shoot this much insulin, eat about this many carbs, and expect a BG of about this. Any craziness we could track back to our own mistakes.

Are smaller (babies and preschoolers) diabetics more apt to swing? 10,15 BG checks per day? BGs defying the ratios. Crazy 200 point swings. Is it just a mere matter of weight and steady growth that make the littles ones hard.

I don't think there's any question that babies and toddlers have a whole different set of D challenges! ;)
When my 9 month-old daughter was dx'd I already had a lot of experience with D. My husband had been happily pumping for some time, and things were relatively easy to manage, and much like your son, there was always some explanation for his his numbers. Eat this, take this much insulin, get this result. You're high because your sick, or because you ate that stupid candy bar, whatever... it all kinda makes sense.

It became clear within about 24 hours of Emma's dx's that those rules did not apply! Our first problem was measuring insulin. We were giving 1/2 and trying (needing) to give 1/4 units of insulin, (if you've never tried to accurately measure 1/4 unit of insulin look at a syringe and see what you think, you'll understand how impossible it is). 1/2 unit could drop her blood sugar 350+ points, so we couldn't give corrections for highs, she could only have insulin with food. When you inject that small of an amount of insulin you never get the same effect twice. If a drop leaks out, it's the entire dose, if you inject in the arm it may peak in 4 hrs, the leg 2 hrs, etc. You can also only give it after they eat, so their BG is already through the roof when they get the shot. It is beyond imprecise! You also have constant warnings not to let them get low, because babies are at significant risk of permanent brain damage from severe lows, so you try to err on the high side... but again it's far from an exact science.
Food was problem #2, she was taking formula every 3-4 hours and 4 oz of milk would raise her blood sugar between 300-400 points. There are no long breaks in between meals, so you never get back down to a decent number. I was always stacking insulin because she was always eating and usually already high. This presents a huge problem when, "Oh no, she's not hungry now!" You never how much they will eat, and you cant reason with them, bribe them, (threaten them :p), like bigger kids.
Growth hormone wreaks absolute havoc on BG. When you're a baby you are growing all of the time, so you may have spikes that send you into the 3-400's w/o eating anything at all. You never know when these spikes are going to hit, so you just treat them as they come and add some more very imprecise insulin to the stack.:rolleyes:
DKA can happen in a few hours and kill a baby very quickly, so every time she vomited w/ ketones present it was an immediate hospital admission. I'm not talking a few miserable hours in the ER, I'm talking 4, 5, 6 days on IV fluids on the pedi floor. Fun for the whole family, and everyone usually ends up sick by the end of the week, so returning home is even better!
The worst part for me was that there was no communication. No "how do you feel?" No signs or symptoms of lows or highs... nothing but occasional crying. She could be 40 or 450 at any given test throughout the day and the only way I had a clue was to poke her little fingers or toes. Naps were (and sometimes still are) horrifying and a constant source of hypos for no obvious reason, (I still don't know why). Every time she cried I had to test, every time she stirred at night I had to test, every time she looked tired tired, was fussy, seemed spacey or lethargic... What else can you do? I pulled my car off the road on several occasions to test her because she was screaming in her car seat. I lived in constant fear and anxiety for many, many months because I never knew what the meter would say, and it was almost never good news!!

So... boo hoo. There's a very short version of my sob story of life with a diabetic infant!;) It just plain sucks, and took almost all of the joy out of having a beautiful little baby girl in my arms, very sad.

She just turned 2 and already things are much easier. Her insulin pump changed our lives because just being able to give her an accurate dose of insulin changed everything for the better. We still have pretty much all of the other issues listed above, just add to them tantrums which always require a test (they almost always mean she's high or low, but try convincing the other people at Target), begging not to be poked, fighting everything about D and not being able to understand any of it. But still, it's better than it was, and I'm so grateful for that!!

[Barry]

Its "counter-parental" to hope your own 2 yr old grows up fast, but in the cases, I can see the wish.

[hartpukas]

Infancy and D are crazy... When we were first diagnosed at 11 months, it was rare and amazing to ever be below 150. Once walking started the numbers began to reflect the activity. But it was not until true toddler age that the numbers became a bit better and (maybe) a tiny bit more predictable. Still we are only beginning to understand her body and D - she just turned 2. Control is something we do not have over D... I look forward to the days that you refer to when trends kick in and you know what to expect.

[zimbie45]

YES.. its harder.. Charlzie was 3 when diagnosed that was hard enough, let alone i cant even imagine the challagence with an infant... that would be much harder....!!! young ones are constintly growing.. non stop... older children dont grow as much as infants. or preschoolers... Teeth growing, height weight, sometimes even growth spurts you dont see. it could just be there feet growing....plus the terriable 2's on top of it all.... they are much finicky eaters, dont want to... will fight you tooth and nail... ON top of it all.. there ISF's are so astranomical.. the tiniest bit of food will skyrocket them and the smallest bit of insulin will plumit them.. they are simply not at stable as an older child.. older children dont have it all the great either though as they hit puberity.. part of all this will start all over....

[OSUMom]

My son was not diagnosed until 18 yrs. old. My heart just aches for you all with little ones. It must be so so difficult. How can your friends be helpful to you - what can we do to help you in real life? I know no one with little ones with d, but I feel compelled now knowing more with my son's diagnosis to do more for you all!!!

[zeb'smom]

Zeb was 18 months old at diagnosis and is now almost 2 1/2, we are fast approaching the one year mark and it has been hard. Zeb will be starting on the pump in a few weeks and I am really looking forward to being able to give him the tiny does of insulin he needs. This morning is a good example of how frustrating not being able to measure small enough amounts to safely give him: Zeb woke up with a bg level of 103 and had cereal with milk for breakfast, history has taught us that giving 1/2 a unit of humalog with a bg below 150 means a low to come, but then no humalog to cover the cereal means a likely high to come. I always try to err on the side of letting him run high as I think that is preferable to lows, but I hate knowing that he needs the insulin and I just can't give him a small enough amount to be safe.
No two days are ever alike, do the same thing get different results. Sometimes he asks for food when he's low but more often then not he can't tell at all and the only way I can know is poking him yet again. I worry if I am missing lows because there are no signs, the other night before bedtime snack he was 54 and chasing his big brother around the room, not a clue.

Diabetes is hard on everyone and I wouldn't want to diminish how hard older kids and teens must have to work to mantain good control, but toddlerhood certainly adds to the constant worry. I already worry some about the teenage years as I understand the all those raging hormones can cause some wild swings as well.

Robyn

[Hollyb]

Hi Barry,

You and I will have a different set of challenges -- the teen years are the next most notoriously difficult because of the high levels of puberty hormones and rapid growth -- but at least our kids will be able to take an active part in managing them. Anytime I feel sorry for myself I just think of what all these folks have been and are going through with their babies. I can hardly imagine anything more difficult and stressful.

Mind you, I imagine your son is still honeymooning. Aaron was the poster boy for great blood sugar control for about 9 months after diagnosis. It's not so easy anymore! Now when he goes high, he doesn't go high to 10 or 12, he goes high to 15 or more. We're seeing more jagged spikes, which is pretty much what's expected as the honeymoon ends but does make good control quite a bit more challenging.

[Reagan's Mama]

I have to wonder with Reagan too, if the fact that she gets inconsistent amounts of insulin from a syringe has anything to do with it.

When she needs a unit - I draw up a unit, but it could be a hair more or less. Is it above the line, at the line, under the line? There is no way to guarantee that she is getting the exact amount that she needs. I assume that is part of the reason why the pump is so much more efficient.

[selketine]

William was dx'd at 26 months - he's 4.5 yrs old now. He still cannot recognize his lows. He was on NPH after diagnosis and could drop from 450 to 70 in 30 minutes - I know because I was testing him 25 times a day at that point. I could never predict what his number would be. I was like trying to steer a car blindfolded on a road you know. You could kinda stay on the road but a wee bit here and there and you're hitting a tree....

I think every child is different - some young children need more insulin or seem more predictable than others with insulin. Believe me - I know basal, bolus, insulin types, read all the books, go to the conferences, talk to the people, and I'm a fairly intelligent person and I can't sometimes for the life of me figure out why his number is too high or low. In some cases I think if someone has a very young child and isn't testing them at least 10x a day (I know there are some who can't afford the test strips) then they probably have no idea of some of the highs and lows they're having. I wouldn't have known either if I had kept to a schedule of testing only 2 hours after meals and some of that other stuff.

[lisalotsamom]

Tessa was diagnosed at 18 mos. She was little, only about 18 pounds. The insulin doses were difficult, and we ended up diluting her insulin in order to be able to give her 1/4 of a unit. I still dreaded each shot and was constantly afraid I'd give her too much by accident. I remember thinking back to when I was in nursing school, and we learned that you should ALWAYS have another RN doublecheck insulin before giving it (like blood, it can be fatal if the wrong type/amount). Now that I was doing it myself, in the middle of the night, groggy, etc---VERY nervous.
The hardest part for me was that she was still not very verbal at the time, and couldn't tell us what she was feeling. So, every whine, pale-looking face, circles under the eyes, tired, tantrum, etc---testing all of the time.
Then there were the food battles. She was on NPH/Humalog for the first 16 mos, and it was a constant fight to feed her enough at specific times to cover the NPH. She couldn't be bribed, explained to, or anything else at that age.
I don't think there is any "good" age to get diabetes, they all must have their own challenges and benefits (if you can call them benefits I guess). There are days when I'm thankful she won't know a life without testing, insulin, etc--because she doesn't question it. Then, I think that it just sucks that she has to have it at all, and didn't have much time without the hassle and worry. Mostly I'm just thankful we still have her, and will do anything it takes to keep her healthy, spunky, and around for a long life.

[Ben'sMommy]

what can we do to help you in real life? I know no one with little ones with d, but I feel compelled now knowing more with my son's diagnosis to do more for you all!!!


Jump on a plane and come visit me for a while so that I may finally have a decent conversation with someone who 'GETS' it!!!
That would be a BIG help. :)

[Hollyb]

Be careful what you wish for, Carol! John and I are dying to go back to Ireland and when we do, County Clare is definitely on the itinerary. Not this year, I don't think, but maybe spring 2008.

Aaron says he wants to come with us next time. Would Ben like to meet a big boy with a pump?

[Ben'sMommy]

Be careful what you wish for, Carol! John and I are dying to go back to Ireland and when we do, County Clare is definitely on the itinerary. Not this year, I don't think, but maybe spring 2008.

Aaron says he wants to come with us next time. Would Ben like to meet a big boy with a pump?


Yes, yes, yes, YES, YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!

:D :) :p ;)

[Tamara Gamble]

Barry, I wish it was that simple. My son is 12 and his sugar levels are eratic sometimes. We are still honeymooning although that is slowly coming to an end. He has trouble recognizing a low or high until he is headed to a dangerous point either way. This makes it much more difficult to control. Roller coaster. Prepuberty. Nightmare they say. Then puberty, oh joy!

I hope your son continues to be so steady. But it's so individual to each child. You will find as you go along that there are some kids who's bodies handle this disease beautifully if there is such a thing and others that just don't.

Sometimes it's lack of care but I can assure you that I am as anal as you can get about this stuff. Dare I say he has been doing great for the last week. He has, I'm so excited!

I would not have wanted to have to do this when Ty was a baby that is for sure. So I do not want to down play what the poor parents of an infant or a toddler are having to go through. Tyler can talk and he can self manage a great deal. I don't know what I would have done if it was any other way. Probably the 25 checks a day. He was a holy terror as a toddler, I couldn't imagine.

Stability wise though I think it's just the child, where they are in the stages of development etc. It's to idividual to speculate. Pray for no glitches. They happen. You can't control them. I hope your ride is smooth.

Tami